Diary of Ms X

2008-06-27T14:43:00.000-07:00

Hey all,
I thought I'd drop a line. I went awol for a very good reason, and have decided that I shouldn't neglect Diary of Ms X as you guys are my friends and at the moment i really need your support. This isn't a promise that I will be around a lot more. I might just disappear again.
It has taken a long time for me ( you know how long as you haven't heard from me in ages!) to come to terms with whats been going on, but as much as I think I'm strong its still very hard to even type this out. It turns out that its not about MS anymore for me, I have MS for a reason. I have MRI scans every 6 months, as most of you would probably have, and in my last scan late January this year the doctors found a brain tumour. So far they have diagnosed it as brain cancer. It is in a very awkward position, they can't operate on it or even do a biopsy. It has grown 2 cm within the 6months from the previous scan. They can tell me that its probably still growing, and also it is secondary. Which means the cancer has come from somewhere else in my body. I have the option of Radio Therapy treatment, but the side effects i would come out with don't look worth living with. I have had further test and am waiting to know where else the cancer is. I'm also waiting for them to tell me how long i have left. It a lot to take in, trust me you have no idea how long its taken me just to write this paragraph.
I can't decide whether its good to talk about things or not. If i don't maybe the subject wont always become a topic and therefore I won't always be thinking about it. I have bad days and good days. I'm trying to keep myself busy. I have always been somewhat of a loner but i can't decide if i should be surrounding myself with more friends. If you guys have any comments I'd appreciate it, any tips or advice, or even just something funny to make me smile would be nice. I hope the rest of you are OK, and most importantly - happy.

Big Brother!

2008-06-05T17:03:00.000-07:00

It must be nearly summer Big Brother starts tonight, or Bug brother as I call it, And would you belive it a disabled person ! Guy who is visually imparied, it will be interesting to see how it works out. I thought at first would be very manic place to go but on consideration I think Big brother could prove very helpful.

.. This is big brother... you are 1 step away from falling into the swimming pool. This is Big Brother.. we have located the remote you are looking for its on the table. How handy would that be! Shopping delivered every week, tasks to complete, oh wait thats real life...

Still not having hidden cameras is good thing, noone is keeping track how many chocolate bars I have eaten or how messy my hair looks, so guess it has its advantages too!

Don't faint - I'm still here!!!

2008-05-11T09:19:00.000-07:00

It has been such a long time since I've posted anything on here, I have been around I promise and I have called in from time to time to have a nose around but haven't felt compelled to write my own boring drivel lol. In fact I haven't really got anything to post about now really but just wanted to say hello to you all.

The weather is lovely, although I have to avoid going out in it. We knew the heat affected me so made sure my motability car had Air Conditioning. Well we went out last Tuesday only to find the AC is blowing out hot air??? We still did our errands with the windows open but it was no good, I got indoors ok and then promptly slid out of my wheelchair!!!! After a lot of huffung and puffing and asking for help we managed to get me up (I really must loose some of this weight), luckily no damage done just a few bruises which are now fading. I am making sure now that any journeys we do between now and Thursday (the car is going to be fixed then)are short and that I am not sitting waiting in the car for too long.

Nothing really exciting going on in my life, in fact this year has been a bit of a bummer really with illnesses (not just mine) things breaking, filling in forms forms and more forms etc etc

But I'm still smiling and the sun is shining, what more do I need!!! Hope you are all well and managing to keep cool.

It must be spring

2008-05-06T08:39:00.000-07:00

I think it must be spring! Sunny days, smells of BBQ floating in the window, idiots up at 9am on a sunday to mow the lawn!

I must have missed the alocation of the spring clean gene, but it was replaced with the spring shop gene! Shopping channels and websites have been very tempting latly. Maybe theres something about the brighter days that inspire us to make our homes look tider/brighter and we aspire to look co-ordinated and matching when we go out.

Hope we are all able to dust of those mobility aids, take off those layers and get out and enjoy some sunshine!

Holiday costs

2008-04-12T14:53:00.000-07:00

Wow me, two blogs in a week! It seems lots of people are telling me about their holiday plans for this year. It seems very unlikely I will go away this year again, but have been looking at a few "disabled friendly" sites on line. I also came across a holiday brochure that I picked up at the last MS life show. Giving you holidays in Europe and with details of how disabled friendly these places were.

What struck me as odd was that all of the places had roll in showers in the bathrooms instead of baths, but if you wanted to be able to use the shower you had to pay extra for a shower chair hire that week. I'm not sure how common this arrangement is in the UK, but does seem very peculiar. Since they have failed to provide a simple chair fixed to wall , means that nearly everyone would have to pay this cost.

Its like charging abled bodied people for the hire of a toilet seat, well we "give" you the toilet but if you want to sit and use it comfortably the extra expense is going to cost you!

Hello from me

2008-04-01T15:20:00.000-07:00

Well its been ages and ages and then some more. Just thought was time I checked in to say I'm still here! What have I been up to? Not very much, sometimes it seems doing the essentials to get through each day takes up well most of the day.

There seem to be friends and family who led very exciting lives who do more in a week than you do in a year, and its hard sometimes not to feel jelous when they say oh I went on the tube here, and popped up there for weekend and all things that take no planning but for me would require some much organization!

I think we learn to enjoy and get pleasure from the smaller things in life, and its only when you look back at how much you have changed you think, no is it really me? Dont know if thats good or bad thing, guess if we dont change we go mad?

Back on track

2008-03-30T06:23:00.000-07:00

WAHOO
I have a meeting to resume my ill fated fashion show next Tuesday. As the Scissor Sisters once said 'Better luck next time'

Been blah, but better

2008-03-11T10:50:00.000-07:00

Quiet here, innit? I think we're all suffering from an attack of the winter blahs.

I've been off university sick, which irritates me immensely. I know I needed to (listen to your body, as I tell everyone else in JJ's) but it doesn't mean I have to like doing it! Basic problem was my liver decided to start acting up, because of the meds I'm on for all my various ailments. The GP and I agreed various changes to my meds schedule which has pretty much sorted out the liver probs, but being ill with that made the MS kick off.

Grrrrr.

Anyway, here I am now - as of yesterday, back at uni. Well, at home, cos I have nothing I need to go in for this week so I'm working at home. You get the general idea though.

Tomorrow I have a hospital appointment with a neuro (not my usual one) who may have made his mind up whether I can have Novantrone. I suspect the answer is going to be "no" as I need a healthy liver to get it, and mine has just been acting up...will see what he has to say for himself though!

Hope you're all well xx

2008-02-27T07:32:00.000-08:00

Here I am again, apologising for going AWOL. I know, I know, I'm a terrible blogger. And all you commenters that I love to read have disappeared, I feel like I've let you all down, please come back!

To be honest I haven't been on the computer much at all lately. Just every now and then when I need to buy beads for jewellary making or a new handbag, and then it's on again, off again. Oh and I read my emails... or the important ones at least. I really am too tired to sit through 20 funnies that aren't funny, and oh god, those fake sentimental I love you chains. I am NOT going to turn into a 3 legged rat if i don't send them on, ok??? I do however appreciate funny funnies, you may send me these... unfortunatly as I am anonymous in this blog my pleas will go unheard.

The reason I've been AWOL is cos I've had Trigeminal neuralgia. The pain is pretty much under control now on tegratol, and a pretty small dose so it's not really that bad. But it has left me with MASSIVE brain fog. I can't really concentrate, so I can't stay on the pooter too long as it's very tiring, let alone think long enough to write a blog entry, or think enough to type and follow a conversation in JJs chatroom or on msn, so I've been missing my JJs friends alot. I can't really concentrate on stuff like crosswords or kakurus in the paper. I mean I can do them, It's just not that enjoyable because I'm on another planet. And I can't make jewellary because I can't really coordinate my brain, eyes and hands. So I'm quite bored round the house during the day because I have nothing to do. There's pleanty I would like to do I just cant. And worse of all, I'm not tired enough to sleep a day away, it's just not that type of fatigue. So I'm stuck in this foggy world of nothingness, boredom and frustration.

When I do go out, which like alot of you I'm sure, I don't get to do very often. I enjoy it but I drift in and out of conversations. I really hope people understand I'm not being rude, I just can't hold the concentration long and sometimes I have to go into my own little world and try to shut out the noise and the movement so my senses recover and I can join in again.

So my plan for this week...
Well, I have one earring still to make, I made the other ages ago but still havent managed to finish the pair
Finish the telegraph saturday crossword. That includes rubbing out all my mums entrys and writing them in neatly... I definitly have OCD issues LOL
Go to the DR with my shopping list of issues. These include exthma (I can't spell it and I'm not looking it up) and a DRs note to let me do a giant zip slide across the River Clyde in Glasgow.
I'm doing the zip slide to raise money for the MS Society, I'll tell you all about it when I get confirmation. But oooh I'm excited!

Speak to you all soon, as soon as can be, bearing in mind to me a fortnight feels like about 3 days
CC

Update

2008-01-31T09:18:00.000-08:00

First of all my itchy feet have developed into itchy, hot and sweaty feet (and smelly too). I've decided to bite the bullet and go to the doctors. Will let you know what they say when I find out myself.

Secondary, the man does like me and we are now an item. We went out last Saturday and to the cinema on Tuesday. We're planning to meet up this Saturday when/if he gets back from a business trip in Birmingham.

Getting my hair done tonight, having it dyed chocolate brown with a pinky-red stripe. :-D

Anyway better go and get ready for my appointment with the hairdresser.

Love you all x

Advice please

2008-01-15T12:28:00.000-08:00

I am unsure whether this is MS related or not, but can't think what else is causing it. I have itchy feet, and they are really annoying me. I have had tingly feet before, but this is different, these are really really really itchy. I want to scratch them all the time, there is no lumps or bumps or anything. Is there anything that I can use to calm the itching down that you know about?

And the second thing is, how do you know if you really like a guy and that he's right for you?

my feet are toooooo itchy grrrrrr

Helllllooooooooo

2008-01-07T13:37:00.000-08:00

Hi all,

Just a quick note to say I am still alive, I have not forgotten about you all.

I am very well at the moment, my MS is not effecting me, so I am making the most of it, getting out and having fun. I have a job, think I might have already mentioned this to you. I kinda have a BF, ish.

As I said my health is good both physically and mentally. Life is looking up and I really am making the most of it, my thinking is "this can't last forever so might as well do the things now".

I don't really know what to say as I don't want to get too personnel here, but I do still love you all and thank you all for your support so far.

Hugs and Kisses

Smokey

Merry malarkey

2008-01-05T11:54:00.000-08:00

Hi all! Just a quick hello to say I am back! I do have an excuse as to why I've been away... I've moved! And now I have internet access, so I'm back.

I'm so glad Xmas and new year is over and done with. I am not an overly grumpy person (ok some might disagree) but I am not a fan of the "holiday season". After a horrible year I am in no mood to slap on a happy mask and pretend to have a good time with others, when all I really want is to stay in my new house alone and uninterrupted.

As well as the expectation from others to spend an insane amount of money on presents. I am unemployed, people and have been for over a year.

I could complain forever about xmas.

Other things I can easily spend all day complaining about include men, the NHS, the government, the benefits people, healthy people who complain about a cold, digital cameras, and of course MS.

If any of you would like a written review of my opinions on any of the previously mentioned, don't hesitate to contact me.
Oh and Candy Cane, I'm not doing it unless you're doing it with me. So there :-p. lol.

Merry xmas, bog off!

2007-12-29T12:21:00.000-08:00

Merry Christmas, but bog off!!

Of all the months I really couldn't be arsed to get ill it was December... and guess what!!

No matter how prepared you try and be, and when you have MS you gotta prepare, a spanner always ends up in the works. And my spanner is known as tegradol!

I was half way through my xmas shopping, doing well, no extra fatigue and no stress... when I was hit with a nice dose of trigeminal neuralgia (I think... I'm not really sure, might just be a dead bad headache). So they started me on this tegradol and I just slept for 10 days! That's 10 days taken out of valuable shopping/visiting time. Which means you end up cramming it all in together instead of pacing yourself and it just becomes a nightmare!!!!!!!

And of course you always get some idiot who turns up unannounced and thinks that seeing as you're not doing anything they can stay for hours (the unnamed perpetrator did bring After Eights... so I made them a cup of tea) not realising the knock on effects of their spontaneous arrival.

This Friday afternoon had been my designated 'rest' day where I would make my last piece of jewellery for a present, make a few cards and wrap some presents at a leisurely pace. Instead, this one hour visit zapped my energy, and gave me less time to get things that I NEEDED to do, done! Meaning I had less energy to do things in half the time, resulting in pushing myself. I then had to cancel a meeting with a friend that I'd had planned for the next day because I needed a new rest day as I was knackered! And I mean the knackered you get when you are so expended you don't have the energy to speak. I was gutted too, I was really looking forward to seeing her. :-(

Now I know, I know, I should have turned the girl on her heels when she turned up unannounced... but as many leaps and bounds as you make in 'learning to be selfish' sometimes it's really hard. You can't go through all your life being 'Miss Ice Queen Super Bitch' and on this particular occasion.... I was just too tired to tell her to eff off and come back when she had rung/texted/emailed me to arrange a suitable time for both of us (yes, I do realise not everyone can work entirely round me).

What really gets on my nips is the fact that if I had a job, or a family of course people would arrange times with me... but no, I'm unemployed, I have all the time in the world! And anything I am doing is far less important than what they do, and it can't make me feel THAT bad.... Or am I just measuring everyone else by my own standards??

Also... those prats who turn up, and when you ask how they are they sniff and say they have a cold.... WELL WHY ARE YOU BRINGING IT TO ME, YOU IDIOT? YOU KNOW I'VE BEEN ON IMMUNO SUPPRESSANTS FOR 4 YEARS, YOU'VE SEEN WHAT HAPPENS WHEN I GET A COLD, YOU KNOW HOW LONG IT EFFECTS ME FOR...... WHY???????????

*sigh* I did have a little sniffle over xmas but my immune system fought it off and it never took hold. I've never felt so proud of myself for events beyond my control... I felt like a dad taking his son to the pub for the first time, and buying his first pint.... that's ma boy!!

I do love my friends, and I do love to see people. It gets very lonely when you can't get out much, and you drop out of people's consciousness but this constant people training is exhausting. I don't do much, and it's bloody hard work not doing much, so please please help me rather than hinder me... is that really too much to ask?? Why can't people understand it??

I did drop a lot of friends who just didn't get it... I worked with the friends who wanted to get it but found it hard to understand... and leant on the friends that got it straight away. It's difficult to turn your back on people, but if people are bad for you it's the best thing to do... question is can I do it again??

Christmas wishes

2007-12-23T01:12:00.000-08:00

Just wanted to say Merry Christmas to you all and hope 2008 is a good year for all of you!!!!!!

Hope you have lots of fun and frolics (that's frolics CC, OK?? lol).

Quick update

2007-12-21T11:37:00.000-08:00

As some of You may be aware I've been missing for a while. Right now I'm in a really dark place & can't see the light at the end of the tunnel. Yeah, I know it's there somewhere but for the timebeing it escapes me. So as you can imagine it's been kinda hard to "show face".

Things haven't been good with me for a few months but I was coping because normally that's what I do. Put on the brave face & pretend that it's all good!!

I won't go into details because am hurting way too much right now to even bring myself to actually admit what happened but I've taken steps too put the situation right.

Anyway think am gonna leave it here coz am not really making any sense.

I hope you all have a very Merry Christmas.

Ms xxx

Me & me big gob

2007-12-18T09:29:00.000-08:00

PSST...

I just accidentally volunteered See See Rider to model at the MS Life fashion show.... Do you think she'll mind??

Happy Christmas

2007-12-16T22:52:00.000-08:00

I promised to write and tell you all about my holiday in November, and I didn't...sorry!

So here's a quick update on what I've been up to, before I go away again.

the holiday in November was good - much partying, much alcohol, nice people. Excitingly, my ex was there - we had some Big Talks. He's currently seeing someone else but wants to finish with her, says he made a mistake finishing with me, yadda yadda. I've told him nothing's going to be happening while he's still with her, so if he wants to finish with her he's to get on with it. I'll be seeing him again at Christmas so he's supposed to be
doing some hard thinking before then and I'm deciding whether I want him back anyway. Meanwhile I'm having my hair done and looking out low cut tops! I'll keep you updated, but he's a champion faffer so I suspect he won't have done anything about it.

My brother is getting married next July, to a woman from Vietnam. She's about my age, and has a teenage daughter. He didn't buy her on the internet ;-) He goes out there for work and met her at one of the companies he works with - she's an engineer. She's very nice, and has passed the ultimate test - my mother likes her too! They're going to have two ceremonies, one in Vietnam and one here. I don't think I'll be making it to Vietnam, but I'm looking forward to the ceremony in Portsmouth. Got to start thinking about presents!

I'm back at university which is tiring but good. I've presented a paper at a conference since going back, and submitted the chapter I was asked to write for a book. Quite the little high-flying academic I'm turning into! I'm also getting bits of consultancy to do from the faculty I'm studying with, which is cool. I was supposed to be doing some when I went off sick, so that's my Christmas holiday activity ("A review of policy and practice in end of life care" - fun, eh?)

MS-wise the news is kind of mixed. I'm much less fatigued than I was over the summer (not that that would be hard, I was sleeping about 20 hours out of every 24) but my mobility is getting worse and worse. I'm waiting to hear if I can start on Novantrone, which would hopefully slow down the progression. Interestingly though, it would turn my wee blue! (and thanks to Shop-Till-You-Drop for pointing out how this would save on Toilet Duck ;-)

Other than that, life just goes on really...I'm off on Saturday for two weeks, over Christmas and New Year, to one of the holiday centres I go to. Hope you all have a great Chrimbo and an excellent 2008!

So tired!

2007-11-26T08:31:00.000-08:00

Right, I've been trying to write this for a week but been sooooooooooo tiiiiiiiiiired!!

Well, my first MS Society big thing went really well. I had the Christmas party last week..... yes I know it was early but I've been organising none stop since last October, and I'm taking December and January off!

I stole Jooly's format from the 10th birthday party and had some music for some stand up fun, and wrote a quiz for some sit down fun... and a buffet .... cos I get hungry when I organise!

Everyone seemed to have a good time so I'm feeling very smug. although gutted I never had time to enjoy my own party, by the time I'd made sure everything was running smoothly, read out the quiz (god I was nervous, I hate public speaking... even if I am hilarious) and sorted the raffle out, I was exhausted so I went home lol.

And when I got home could I just flop into bed??? NO! I found 2 cats and a MASSIVE live toad on my doorstep. So here I am trying to get rid of this toad, I didn't want to open the door in case it jumped inside (it was right on the ledge) but I didn't want it jumping into the jaws of death either... but I couldn't just pick it up and take it somewhere like I would do with a mouse, cos 1. I had no idea where it came from 2. my hands were full (and I don't just mean a little bit full, I had a CD player, a bouquet of flowers, and a bag full of quiz papers and answer sheets) and 3. I was wearing 4 inch heels.

Anyway, my friend's husband got out the car to help and guided it away from the doorstep, and jumped like a girl when it jumped... like a toad, and all disasters were averted! Apart from that the poor toad was miles away from home because my lovely pussy cat thought it would make a nice present (well I do like green), cheers Bramble, I love you too xx (I know it was Bramble cos he brings live presents, where as Lily likes them dead, and often eats half... she's very selfish)

So... that's about as exciting as my life has been recently.... more posts to follow now I've started leaving the house again after my hibernation and mini depression, happens to us all eh??

Christmas!!!!!

2007-11-24T13:51:00.000-08:00

We have all been quiet haven't we. Don't know if you're back Wednesday Addams but hope you had a nice holiday and I hope everyone else is ok.

Just a question for you all. Are you ready for Christmas? I realised the other day that we have hardly done a thing and there is less then 5 weeks to go arrrrrrrrrrggggggggghhhhhhhh. I only realised it was so near when I realised it's 2 weeks to my birthday and I know Christmas is only a couple of weeks after that. We did order a couple of bits online yesterday but still got lots to do. But I'm not gonna stress about it, I've decided that what doesn't get done doesn't get done - tough!!!!!

Another thing, for those of us in wheelchairs. Do you find the shops harder to get around this time of year? Isn't it just so annoying that they fill the aisles with, what can only be described as crap (well most of it). It's like wheelchair users don't shop at Christmas do they?? God forbid!!!!! Right that is my little rant over.

Just in case I don't get to write here again before the big day I wish everyone a very merry Christmas. Have a good time and don't eat/drink too much.

Alive again (ish)

2007-11-15T05:26:00.000-08:00

Wow, everyone's been absent, not just me. Well, hopefully I'm sort of back. Ish. I've been having a relapse you see. Damn MS. Did I tell you I have MS? So I've been doing lots of sleeping. I'm not 100% now, but I'm better than I was...and if I wait till I'm 100% I'll be waiting the rest of my life, so I'd better get on with it!

I'm off on holiday on Saturday (cue more sleeping in preparation for party party party) - will tell you all about it when I get back!

Woohoo *sets off party popper*

You live where?

2007-11-08T08:49:00.000-08:00

This will make you laugh.

I had a letter today from the DWP (Department of Work and Pensions) with a letter and form for me to return. Oh, what was the purpose of this important letter? What top secret personal information do they need to know next?

Dear Ms X,

We are writing to you at Your Road to ask you where you live, as we do not have an address for you. Please return this form letting us know your address.

!!

Urmm, funnily enough the address at which you wrote to me is actually where I live. Imagnie that!!

I seriously wonder how some departments run at all.

P.S. I have highlighted the part asking for my address and then made big arrow to my address saying "I've found it!!".

Under the 'Your Reply' part of form I wrote:

"My address would be the address to which you sent this letter. Just to confirm, this is my one and only address since I told you I moved last year. Does this help you in this matter?"

Back in time

2007-11-01T11:26:00.000-07:00

We're going back, back in time...

Well, I went to physio today. Transport picks me up really early so usually I have a 30-45 minute wait. Today I spotted some 'new' magazines on the table so went in for the kill...

The cover said Home and Houses Magazine October 1985. Huh? I thought. Can't be true. It must be a spoof cover. Let's look inside. But it was all true!

For those of us who think that's not that long ago, it is 22 years ago!!!!!

Was funny reading about all the “new” gadgets of the day.

A new regnor car with - wait for it - windows that you don't have to wind up! You can push the button!

A tumble dryer that will dry your clothes 'like a gentle summers day'.

An oven with a fan that means you can open the door when cooking a soufle and it won't go down (essential, eh?).

I'm glad the craze for bright plastic bathrooms is over as well as the chinz look.

Anyway, beat that if you can!!

Ah, there you are!

2007-10-31T13:05:00.000-07:00

Sounds like everyone has been in pretty much the same head space.

I keep thinking about the blog and feel terribly guilty for not contributing. I just have so many emotions swimming round my head, and I'm so exhausted that everytime i sit down and try and write, i just dont know where to start. And to be honest right now i just dont want to put my feelings down on paper... or screen cos i have far too many!

I haven't forgotton about the blog, and I'll be back i promise i just need to sort myself out etc

Don't forget me xx

Here I am at last!!!

2007-10-27T13:20:00.000-07:00

Well here I am and it's about time, I know I've been gone for ages. Well it seems like it. I have been popping in from time to time but never felt like writing anything but I thought I better this time.

As you may know, most of our time over the last few weeks have been spent backwards and forwards to the vets with our cat. We originally took her in because she seemed to have a cold, coughing and sneezing. The vet gave her some anti-b's and said that she badly needed her teeth sorted out. So we give her the anti-b's and all is well until about a week after the meds have finished and she starts the coughing and sneezing again!!!!!

So we take her back and the vet gives her stronger meds but says that it could be her teeth causing it. She was also concerned as she had lost weight in the 2 weeks since she'd last seen her, so she ordered blood tests. The results came back that she has hyperthyroidism (an over active thyroid, yeah I didn't know cats got the same illnesses as humans!!) So we had to choose between surgery, meds for life or a radiotherapy treatment. We opted for the meds as she is getting on and we didn't want her to have a long op. So she now has 4 tablets to take a day (if you've ever tried giving a pill to a cat you can imagine what fun we had).

They then do more blood tests to make sure the thyroid meds are working which thankfully they are and she has gained her weight back and more but it now turns out she has a slight kidney problem which is common in older cats, so the vet who told me over the phone did a script for more tablets, but when Kieran took her back to check her teeth the vet said it could be controlled by diet. He also booked her in to have her teeth operated on. So that operation took place last Monday and she had all her back teeth pulled and her front teeth cleaned. She has healed up lovely and is eating and everything as normal. So it's now just the 2 tabs a day for the thyroid. As you can imagine she has cost us a small fortune (nearly £500 I think yikes!!) but she is worth it.

So that has been my life for the last few weeks. Sorry if this was long and boring but I really don't have much else to write about (or nothing I can think of anyway).

Understanding

2007-10-26T13:36:00.000-07:00

I found this here.

Having MS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about MS and it's effects on us; and many of those who think they do know are actually misinformed. In the spirit of informing those who wish to understand... These are the things that I would like you to understand about me before you judge me: Please understand that being sick does not mean I'm no longer a human being. I have to spend most of my day in considerable pain and exhaustion and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, and work, and my family and friends, and most of the time I'd still like to hear you talk about yours too. Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it for a week or two, but I've been sick for years. I can't be miserable all the time, in fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy, that's all. It doesn't mean that I'm still not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say "Oh, you are sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you are welcome to.

Please understand that being able to stand for 10 minutes doesn't necessarily mean that I can stand for 20 minutes or an hour. Just because I was able to stand up for 30 minutes yesterday doesn't mean I can do the same today. With a lot of diseases and disorders one is either paralyzed, or they can move. With MS it's far more confusing: one hour or day or week or year we may have normal - or almost normal - mobility; the next hour or day or week or year we may be unable to sit, stand, walk, think, remember, or even get out of bed, we may be unsociable or depressed, and almost assuredly we are in pain. We have good days and bad, and during our good days we may truly not "look sick", but we are. Please understand that making plans other than immediate ones is a crap shoot at best, because we can't know how we will feel or what our physical, mental or emotional condition will be. If we seem to hedge about making plans with you, please understand it's because we truly don't know if we will be able to honor them. The same applies if we have to cancel plans previously made or invitations, even at the last minute - it is not personal, and it makes us as frustrated and sad as it does you! That is what MS does to us, and it's how we must live our lives. It is not just a matter of sucking it in, or bucking up, or psyching ourselves up; believe me if we could, we would!

Please understand that MS is variable - with each person and from person to person. It is quite possible and often all too common, that one day I can walk to the park and back, or bicycle 2-4 miles, or swim 12 laps, or even run with my dog; while the next day I may have great difficulty getting out of bed, walking to the kitchen, or be unable to walk at all without a cane, walker or other mobility aid. Please don't attack me when I can't do today what I did before by saying "but you did it yesterday!" or "you did it before!" Your frustration can not begin to compare to our own frustration. The very act of planning while not knowing what condition we will be in is stressful and tiring in itself. If you want me to do something with you, or go someplace with you... ASK if I can. I may well dearly want to go, but simply be physically unable to do so. Understand if I have to say no today, but please ask me again soon. Please understand that "getting out and doing things" does not make me feel better and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes, take these vitamins, herbs, tonics and snake-oil cures will frustrate me to tears and is totally incorrect. If I was capable of doing things, don't you think I would? And when I am capable, I DO! I work with my doctors and physical therapists and follow the exercise and diet plans they prescribe.

Another statement that hurts: "You just need to push yourself more..." Obviously, MS directly impacts muscles and ours do not regenerate as quickly as yours do. Pushing ourselves beyond comfortable physical limits can be dangerous and cause a severe relapse. On the other hand, doing what we can when we can is excellent therapy both physically and mentally... and we do! If I work at a part-time job for 4 hours one day, my fatigue level is greater than yours if you worked a 12 hour day. Many days I can still do anything I ever did as well as I ever did ... but only one thing per day or week or month. Everything drains us and exhausts us exponentially more than a normal, healthy person our age (whatever age that is); our recovery time is also exponentially greater. If I go to a party or dinner and show tonight for several hours and have a wonderful time, I do so knowing with 99% certainty that tomorrow I will need all day to rest and recover, much of it spent lying down. MS causes secondary depression in and of itself; our depression may escalate when dealing with days on end of constant pain and limited mobility or cognitive function. We are NOT tired because we are depressed! We are depressed because we are so tired.

When I say I can't do something because I am so fatigued, please don't say "Oh I know what you mean! I am worn out too, but..." because you don't. MS fatigue is not like any tiredness you have ever experienced, nor has anyone who does not have MS or other fatigue-producing disorder. I know you mean well, but it's irritating to hear because it tells me you don't understand me or my MS at all. I may well be just plain tired - we get normally tired during remission phases just as any normal person does - but trust me: we know the difference, and it's huge. When we are together, please understand when I say I have to sit down, lie down, get a drink, take these pills, or get into a cool place that I have to do it and do it now! No, I can't walk another 5 blocks to the car, or walk back down the hill I just climbed up. Don't baby me, don't hover over me, don't do things for me unless I ask - we are very proud and never want to be a burden. Our independence, or what we can retain of it, is of paramount importance to us! Please help by listening to and believing what we say we need and act upon it accordingly and as quickly as possible. You wouldn't question a known diabetics request for orange juice or insulin, so please don't question us or urge us to 'keep on... we are almost there!' Not unless you are prepared to a) carry us the rest of the way or b) call 911. MS does not wait, nor does it forgive... when we say "please ... now!" it means now. If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my family and friends suggest something at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even markedly helped, all forms of MS the world would know about it. If you still insist on promoting 'cures' to me or giving me 'this will make you better' advice, do so; but understand I won't rush out and try it though I may well continue to research it on my own and discuss those findings with my doctors.

In many ways I depend on you... people who are not sick... I need you to visit with me when I am unable to go out; sometimes I may need you to help me with shopping, cooking or cleaning; sometimes I may even need you to do those things for me. I may need you to go with me to my doctor appointments to help me remember and understand their direction, or I may just need a ride. I need you on so many different levels... as much as possible, treat me as normally as possible, enjoy me and allow me to enjoy you as much as possible, and.... as much as it's possible... I need you to understand me.

I'm still alive!

2007-10-26T08:43:00.000-07:00

Hi everyone,
Do not adjust your sets, it actually is me! No I haven't dropped dead or been back packing in darkest Peru without Internet access! I have had a little break for a while, and been busy completing my end of year exams for Uni so no I'm back.

I decided to go out to the library today, after all my studying I can now legitimately read a non work book without feeling guilty. It was quite funny- you know how most people who work in the job centre (see posts by smokey) amaze you by being employed, well I think 3 of them have been on secondment from job centre plus!

The displays similar trates in behaviour...
1. Totally incapable at doing their job
2. Fact that might need to do more than 1 thing at once, is overwheming
3. Have to discuss with someone else how to do basic task- which form to give, which button to press on computer.
4. Speed levels are dead slow or stop
5. No shame in asking a collegue for help with basic task, while proclaim loudly 'Ive not had training for this'.
6. NO sense of time see that the 7 people waiting continue to look at watches etc, while they consult whether a juinor card is green or blue etc.
7. Use of technology is treated as if they are in control of control panel to set off world war 3.
Is it just my library or does everyone else find the same?

Well I made it out of there alive, this poor lady who was behind me was sitting waiting (whilst pulling out hair) to fax 3 pages on machine, and was now half climbing over counter to see what 2 of them were doing. I raised her my eyebrows as I left as if to say Wow your still here, good luck!
Im hoping the speed at which my fines are sent to me will be at a slower speed judging by the above performance!

Quiet, I agree.

2007-10-20T06:29:00.000-07:00

Things have been quiet, i agree. I apologise for not being as faithful blogger as others might be. Events have happened. Don't get me wrong. I met a friend of mine for a coffee the other day, we haven't seen each other since I've started walking again. I talked and talked, even the table next to us lost interest in one another and opted to eavesdrop. Three hours later I asked my friend "so how you doing?". Those hours were filled with my stories of turning 21 and what happened on my mothers 50Th, my trip to Barcelona and the troubles i ran into, my new house and how it was fate we found each other, trying to set up my business - again! and the usual gossip about siblings, boyfriends, old workmates, and enemies. It sounds like a never ending tale i could have shared with all of you. I did want to, the countless times I would start writing and just stop mid sentence. 'what am I doing?' i thought 'people don't want to read about this, boring crap'. I know the truth is you probably do. The problem is these little juicy snippets of drama excite me only for so long until they are stored in my memory, the more they are extracted into speech they loose their colour. That is why as i sit here in my half packed up room, my days are filled with errands yet i myself strangely feel numb and dull. Like the weather. I feel no excitement nor any stress. This haze around me forces me to feel bored when i have plenty to be doing. I can't believe I am moving on Thursday, yet it has taken so long to come to this point! I simply don't know what to do with myself and i can't figure out why. .

Update

2007-10-19T11:02:00.001-07:00

I too have nothing profound to say, but very aware that I have not written here for awhile, so thought I would give you an update on my life at the moment:

M.S: My MS at the moment is behavouring itself, keeping it's nasty head down and out of my way. My left leg is a bit weak but after my last relapse it has always been weaker, so not to worried about it, I can stand, walk and do "normal" things still. So all good on that front.

Job: I am still employed, my temp contract has been extended for another month (was due to expire 22/12/07 now put as 29/01/08) OMG just realised how close we really are to 2008!!! I am still enjoying my work, and still hoping it will become perminante. The people there are great, the job is not exactly rocket science, but still I enjoy it.

Love Life: Tomorrow I am going out with someone, so will report back later on that one. We have known each other for a month now, but this is the first time it will be in a social capability. We met due to work, he works in the warehouse. He is 35 (older man!) and a great laugh.

Pets: My cat is asleep to my right, fast asleep. Asleep is a luxary that he did not allow to have the night before grrrrr. He is eating well, too much, he is actually eating way to much, he will eat till he is sick. three bowls of cat food (three cats in the house and he ate all the food), in one sitting.

Up Coming Events: Going to watch the rugby tomorrow and meet this new date. Get paid on Thursday (first pay check for about a year!), got a birthday dinner on Friday. Shopping on Saturday. Sunday still not clear. Halloween party on well Halloween, and another one in the pipe line. And loads of boring council meetings.

Conclusion: I am happy, I am settled.

Anybody there?

2007-10-16T09:39:00.000-07:00

Oh Dear, been very quiet recently hasn't it?

I'd love to say something profound... but i'm just too tired!

Catch up with you all soon xx

Grrrrr

2007-09-27T12:13:00.000-07:00

Silly MS!

Fairy tale

2007-09-25T04:33:00.000-07:00

The three bears. The big bad wolf. The hare. All the villains are here. To judge a pageant of victims. Beautiful criminals of the other sort. Chewed. Digested and shite out as something else. Stories she would tell herself, in the middle of drinking. In the judgement between sobriety and sleep. Words she could manipulate to change how she grieved for them. How she organised her grief. Into rigid compartments. Brief addictions to each person that had led to one long term relationship with her own loneliness.

She saw it as a kind of poverty. A form of working poorness. Everything she had earned handed back to the struggle. A false insurance policy that denied her need for care.

She drew in pen. On the backs of papers she'd not read. Advertisements sent to some thriving person they presumed inhabited her world. She wrote letters. A cacophony of metaphors she never sent. Little doses of the cure she knew was looking for her. As she continued her flirtations with the disease.

She was still the same person. And a different one. There is change in repetition. The freedom of addiction making everything clear. It's splendid to be hopeless.

The villains are always on hand. The victims always ready to fail. Life is a fairy tale. Because just when you've rebuilt it, there's always someone there to blow your house down.

Prince

2007-09-23T10:19:00.000-07:00

Prince took over my life!!

Hi all, I'm finally here to post a new blog instead of leaving quick comments. Life has been kinda upside down since the beginning of August and it's all because of Prince (the little purple funkster!!!).

As most people know he has played 21 nights in London and we went a total of 5 times!! (Yes we are mad lol). Now I know he's not everyone's cup of tea (no nasty comments here please Candy Cane lol), but I have to say he was absolutely fantastic. We have waited 5 years for his return (last time we saw him was in 2002 at Hammersmith) and he was well worth the wait. I have to say that he was the best we have ever seen him (and we've seen him a lot!!!) It's a little depressing that he has finished his tour but to be perfectly honest I don't think I could manage much more as it has completely knackered me out!!!

We were sensible and spaced the dates out (1st, 14th, 31st Aug and 6th, 21st September) and I'm glad we did as it was taking me longer and longer to get over the night. I still feel completely drained from Friday's show (which was phenomenal as it was the last night.) Sky news broadcast the first half hour live, but if anyone saw that do not take it as an indication of what he was like as it was a piss poor recording!!! ggrrrrrrr!!!!

Anyway now we can get back to some form of normality and get on with the things that we need to sort.

One of those things is the parking where we live. When I was moved here one of the stipulations my OT made was that there had to be parking. Well there is sort of. No one has a specified space but we were told that we could take any space that was free and just put a padlock on the post when not there so no one else could park in it. Well this worked fine until the post got knocked down about 2 years ago!!!! We have been trying to get it sorted since then. I've now been told that all the posts are being replaced (as most are missing) and that one space will be specifically reserved for me. Now I was told this weeks ago and, yes you've guessed it, nothing has been done and the last couple of weeks we have had some problems with people parking in there or across it so I can't get in it, (most of the neighbours are good as gold as they know we park there but one of the girls has got herself a pig ignorant boyfriend who has an equally ignorant son!!). So guess what my next few days are gonna be spent doing.

Anyway better go before I bore you all to tears ;o)

I have a job

2007-09-14T02:57:00.001-07:00

I HAVE A JOB !!!!!!!!!!!!!!!

Now me going back to bed

Spot the wedding

2007-09-10T10:54:00.000-07:00

Hi all! Brooke, good to see you. Wednesday, you really are superwoman!

In my last post I was all exited about walking again, I had forgotten how tall I was and so did everyone else. I was also exited about a wedding i was going to, it had always been my 'finish line'.

It was a big wedding, lots of money spent (very gaudy outcome, I have to say ) and i was NOT about to hobble or wheel myself. As I said in my earlier post, high heels were on the menu.

A week before the wedding, the dress i made specially for the occasion was ready and stunning. A few days before the wedding, I was ready and stunning too... or so I thought.

Thursday night (wedding on Saturday ) my right cheek has a red painful swelling. A bite? a Sting? NO! A SPOT! A humongous red spot boiling underneath my skin!

I never get spots on my cheeks, if anything my cheeks have been my only facial pride and joy, soft and smooth.

I panicked, What do I do? Whadoaydoooo?? I need to do something, I thought, I can't turn up like this!

So I went out, and for the first time since i was 13, I bought some spot cream!

Reduces redness and swelling in just 4 hours! it read.

I slapped a load on, covered half my cheek with the stuff.

Four hours later, nothing changed, so i put some more on! Every couple of hours I was smothering myself in it, the stuff was so toxic the fumes were making me dizzy. This has to be doing something, I thought, something this potent can't not be magically removing the beast!

Now here is where i learn my lesson... It did make a difference, a massive difference, the stuff was so strong and i smothered so much of it on my face. It left a chemical burn the size of a 10p coin. A deep dark angry red scab with edges like a volcano had just erupted.

It was Saturday morning already. The scab was thick, concealer was not even close to covering it up. So as a last attempt, and here is my second lesson learnt, i picked the scab open. Now it was a meteor that hit earth causing a fire, a flood, and lava to spill out of the huge crater. Yes girls, it was sticky and ugly, you can only imagine how the wedding went for me.

I hope this gives you nightmares!!

PS: Spot cream is an alien invasion in a bottle, designed to dissolve you alive when used.

Hey girlies

2007-09-10T07:14:00.000-07:00

I really haven't got anything I'd like to say today but feel that I should post & let you all know I'm still very much alive & kicking.

You girls rock!!

Superwoman

2007-09-10T00:03:00.000-07:00

How to be Superwoman

It can be frustrating having MS. Hey, don't beat around the bush Wednesday...it is frustrating having MS. One of the things I find worst is seeing my friends (or former friends, in some cases) running around, living normal lives, complaining about how busy and tired they are, with absolutely no idea of how bl**dy lucky they are...

Having MS doesn't mean your life ends though. You just have to rearrange your priorities a bit. Far and away the most disabling thing of all this for me is fatigue. So I've learned that if I have something coming up - particularly something important, a party or a night out - I have to clear the day before as much as possible so I can rest. At first I felt guilty about resting. Bad Wednesday, don't feel guilty - you have a major chronic illness, and are doing what you can to live with it.

I'm a full-time university student. Starting that was a big step - I honestly didn't know if I'd be able to do it, physically. I've had to take some time off sick (every so often my body says woaahhhhh!) and I'm lucky that my university is amazingly supportive...but you know what? I'm doing it! I have to be careful not to get over-tired, but I've managed to finish the first year and I believe that I'll finish the whole degree.

Living with MS is a juggling act. We have all the balls in the air - family, work, studies, social life, health. It's just a bit harder for us to keep them all there than it is for Ms Normal. But hey, who wants to be normal anyway? ;-)

Never joke

2007-09-07T01:51:00.000-07:00

A lesson I have learnt today, and it is only ten to ten in the morning and I have been up two hours, is to never joke about anything, it will only come back and bite you in the butt. It has a habit of turning into Chinese whispers and someone is bound to take it seriously, then ring you up and rant at you.

Let me take you back to the beginning, where and when I first made a jokey comment. A few months ago I went into my local pub, my leg was a bit wobbly and one of the locals asked what was wrong, so I explained, that I have MS. Then I said as my ex had MS first I think I caught it from using the same toilet seat, everyone around seemed to see it as a joke, they laughed, and I did even go on to explain that I had the symptoms I have now that is being put down to MS since I was young so it's not really that. Not that hard to understand really is it.

That as far as I was concern was the end of it.

Then this morning I receive a phone call from someone who lives abut 15-20 miles away, ranting about the fact that her mother has MS and heard at a local day centre (that I didn't know exists and now wouldn't go to) that I have been going around spreading rumors about the fact that MS can be caught of toilet seats. No matter how many times I said I was joking, explained my story, told her I was joking again and again, explained that I told everyone at the time I was joking, she was not listening. I then went on to enquire how she got my number, which just got me confused, as she got it off someone I never heard off before.

For those of you who don't know, an ex of mine has MS, he wad diagnosed in 1998 and we got together in 2003, I got my diagnoses for MS in August 2004. Which is why I have joked in the past, but never again, about me "catching" MS off my ex and it must be from the toilet seat as that was once rumored to be the case. Really I am taking the piss out of the person/people who wrote that in the newspaper many years ago. I KNOW IT IS NOT THE CASE G-DDAMMIT!!!

So that's my lesson of the day. Don't joke. Don't try and be light humored. It just causes you stress later on in the day.

Sorry about my rambling rant, I hope it makes sense, and if not please ask and I will try to explain better.

(After re-reading and pacifying it a bit more, I think it is safe to publish. Sorry about any spelling mistakes I missed)

Understanding MS

2007-09-06T11:21:00.000-07:00

I received this in my email today and thought I would share with you all as it is thought provoking and "fitting". It's a bit of a long one, but here it is:

Understanding what MS is

Having MS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about MS and its effects on us; and many of those who think they do know are actually misinformed. In the spirit of informing those who wish to understand...

These are the things that I would like you to understand about me before you judge me:

Please understand that being sick does not mean I'm no longer a human being. I have to spend most of my day in considerable pain and exhaustion and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, and work, and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it for a week or two, but I've been sick for years. I can't be miserable all the time, in fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy, that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say "Oh, you are sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you are welcome to.

Please understand that being able to stand for 10 minutes doesn't necessarily mean that I can stand for 20 minutes or an hour. Just because I was able to stand up for 30 minutes yesterday doesn't mean I can do the same today. With a lot of diseases and disorders one is either paralyzed, or they can move. With MS it's far more confusing: one hour or day or week or year we may have normal - or almost normal - mobility; the next hour or day or week or year we may be unable to sit, stand, walk, think, remember, or even get out of bed, we may be unsociable or depressed, and almost assuredly we are in pain. We have good days and bad, and during our good days we may truly not "look sick", but we are.

Please understand that making plans other than immediate ones is a crap shoot at best, because we can't know how we will feel or what our physical, mental or emotional condition will be. If we seem to hedge about making plans with you, please understand it's because we truly don't know if we will be able to honor them. The same applies if we have to cancel plans previously made or invitations, even at the last minute - it is not personal, and it makes us as frustrated and sad as it does you! That is what MS does to us, and it's how we must live our lives. It is not just a matter of sucking it in, or bucking up, or psyching ourselves up; believe me if we could, we would!

Please understand that MS is variable - with each person and from person to person. It is quite possible and often all too common, that one day I can walk to the park and back, or bicycle 2-4 miles, or swim 12 laps, or even run with my dog; while the next day I may have great difficulty getting out of bed, walking to the kitchen, or be unable to walk at all without a cane, walker or other mobility aid. Please don't attack me when I can't do today what I did before by saying "but you did it yesterday!" or "you did it before!" Your frustration can not begin to compare to our own frustration. The very act of planning while not knowing what condition we will be in is stressful and tiring in itself. If you want me to do something with you, or go someplace with you... ASK if I can. I may well dearly want to go, but simply be physically unable to do so. Understand if I have to say no today, but please ask me again soon.

Please understand that "getting out and doing things" does not make me feel better and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes, take these vitamins, herbs, tonics and snake-oil cures will frustrate me to tears and is totally incorrect. If I was capable of doing things, don't you think I would? And when I am capable, I DO! I work with my doctors and physical therapists and follow the exercise and diet plans they prescribe.

Another statement that hurts: "You just need to push yourself more..." Obviously, MS directly impacts muscles and ours do not regenerate as quickly as yours do. Pushing ourselves beyond comfortable physical limits can be dangerous and cause a severe relapse. On the other hand, doing what we can when we can is excellent therapy both physically and mentally... and we do! If I work at a part-time job for 4 hours one day, my fatigue level is greater than yours if you worked a 12 hour day. Many days I can still do anything I ever did as well as I ever did ... but only one thing per day or week or month. Everything drains us and exhausts us exponentially more than a normal, healthy person our age (whatever age that is); our recovery time is also exponentially greater. If I go to a party or dinner and show tonight for several hours and have a wonderful time, I do so knowing with 99% certainty that tomorrow I will need all day to rest and recover, much of it spent lying down. MS causes secondary depression in and of itself; our depression may escalate when dealing with days on end of constant pain and limited mobility or cognitive function. We are NOT tired because we are depressed! We are depressed because we are so tired.

When I say I can't do something because I am so fatigued, please don't say "Oh I know what you mean! I am worn out too, but..." because you don't. MS fatigue is not like any tiredness you have ever experienced, nor has anyone who does not have MS or other fatigue-producing disorder. I know you mean well, but it's irritating to hear because it tells me you don't understand me or my MS at all. I may well be just plain tired - we get normally tired during remission phases just as any normal person does - but trust me: we know the difference, and it's huge.

When we are together, please understand when I say I have to sit down, lie down, get a drink, take these pills, or get into a cool place that I have to do it and do it now! No, I can't walk another 5 blocks to the car, or walk back down the hill I just climbed up. Don't baby me, don't hover over me, don't do things for me unless I ask - we are very proud and never want to be a burden. Our independence, or what we can retain of it, is of paramount importance to us! Please help by listening to and believing what we say we need and act upon it accordingly and as quickly as possible. You wouldn't question a known diabetics request for orange juice or insulin, so please don't question us or urge us to 'keep on... we are almost there!' Not unless you are prepared to a) carry us the rest of the way or b) call 911. MS does not wait, nor does it forgive... when we say "please ... now!" it means now.

If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my family and friends suggest something at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even markedly helped, all forms of MS the world would know about it. If you still insist on promoting 'cures' to me or giving me 'this will make you better' advice, do so; but understand I won't rush out and try it though I may well continue to research it on my own and discuss those findings with my doctors.

In many ways I depend on you... people who are not sick... I need you to visit with me when I am unable to go out; sometimes I may need you to help me with shopping, cooking or cleaning; sometimes I may even need you to do those things for me. I may need you to go with me to my doctor appointments to help me remember and understand their direction, or I may just need a ride. I need you on so many different levels... as much as possible, treat me as normally as possible, enjoy me and allow me to enjoy you as much as possible, and.... as much as it's possible...

I need you to understand me.

MRIs are boring

2007-09-06T02:30:00.000-07:00

Not much else to say, i just felt i should post because i havent in a while... been enjoying myself in sunny spain. Is it wrong that i caught up with what my friends had been up to for 2 weeks by checking my blog?? big yey for see see rider for getting p*ssed and hoorah for shop-till-you-drop for kicking carer ass!

I've been for an MRI scan this morning cos the prof just wanted to check whats going on inside my head (yeah, not alot i hear you all chorus) after my last appointment when i told him i wanted fixed. Hopefully it'll give him more info on what treatment will suit me best and what i need to do to pull me out this hole.

I think I'm gonna get my theory test done this autumn and do my driving test after christmas.... i say i think cos i'm just not sure whether i want to keep putting myself through all the heartache and disappointment. i know i have to do it..... i just cant be arsed! 2 years, 2 failed tests, 5 cancelled tests, 4 due to ill health, 1 due to a family tradgedy. Maybe it's just not meant to be! ach well nevermind, i'll write soon xx

Alan Rickman fans

2007-08-29T12:58:00.001-07:00

Following a previous Rickman-themed discussion, I thought some of you might be interested in seeing how Snape's Too Sexy!

These legs...

2007-08-20T12:00:00.000-07:00

Are made for walking, and that's just what they'll do, one of these days these legs are gonna walk all over you...

Hi all..

It seems it's been a while for everyone to post a blog entry.

I think we're all too obsessed about the weather at the moment.

The last time you heard from me I was ready to run over a certain GP for crushing my latest dream and inspiration for my new found faith. From there I spiralled downwards to the bottomless pit we all know as depression.

Things didn't make sense to me anymore, I didn't know what my plan was, or how to feel. Confusing everyone around me with my baffling behaviour, as usually I think I'm pretty good at acting normal. Suddenly I was very obviously ill.

I was looking forward to the long-planned weekend away in the countryside with an old friend who was in similar distress. Brilliant, we can emit our sour odours to each other and swap heavy shoulders.

But something happened out there, my senses were cleared, clean clear air filled my lungs and all I could see was green, wide open spaces, and the only buildings present were pleasant to the eye and probably more pleasant to be in.

Now, this is what I wanted. I realised that in order to be happy I need to change my situation, physically put myself somewhere where I will be happy.

So I've been working on it. Slowly, I crawled out of my chair and pushed myself to walk on my crutches. My physiotherapist then made me swap them for something I can't lean on, so I had two very tall sticks. These were so cumbersome I couldn't be bothered and opted for my old trusty walking stick. During this time my income support had come through (finally, after 8 months!) and for once I had some money in my account that didn't come from a member of my family.

I walked so much as I loved being out of the house and having the freedom to roam free.

So last week I ditched the stick, my third leg was finally left behind and put to rest leaning behind my door.

I put on some nice clothes for the first time, got on the tube for the first time, and went to town for the first time in about 9 months. Then I had my first drink and got absolutely pissed!! Yes yes, I know, pissed on one measly glass of wine. In my own defence, I didn't have any lunch.

So here's a toast to (as Smokey said) taming the beast!

This weekend I am going to a wedding, I've made my own dress, I'm going to wear my high heels and I'm going to be fabulous! I am also going flat hunting.

So who knows where I'll be next week, hopefully a step closer to being happier than I am now!

More stupid carers

2007-08-19T13:16:00.000-07:00

For those of you who read my last post on my lovely new carer, you'll be sad to hear that there hasn't been much improvement. In fact she has grown on me in poor amusement factor alone.

Her gem of this week was asking me in a patronising tone "Do you have a boyfriend?" Urm, no, not right now.

"Oh you should get yourself a lovely disabled boyfriend."

I suppose he has to be disabled I mean who else would want to go out with me?!

Then, as if to elaborate the point, she adds "I know this LOVELY disabled couple..." and she goes on in detail about their personal disabilities (Firstly, I don't want to know! Secondly, that stuff should be private with the agency).

Then she says, "Oh, but I don't know how they have SEX!"

Just when I'm about to point out that I'm sure they manage just fine she starts pulling yucky faces and making 'tut tut urghgh' noises!!

Amazing to think this is a women who's is working in the so called 'caring profession'. And the sad thing is she has no idea that what she says is inappropriate in the least.

It was her last day on Friday and I was wondering with what marvellous upbeat message she would leave me. Instead she patted me on arm saying "Aww I don't like to think of you here being on your own, you poor thing... awwwwww".

This is as I'm waving her out of the door - locking it behind her!!

Anyway, I've got a new person starting this week- can't be any worse... surely?

Badminton

2007-08-19T04:38:00.000-07:00

... and shuttlecocks

I've never been able to decide if love is necessity or science. But either way it's nothing special. I've dressed for the part. Played the character. Not that it wasn't genuine. Just that I felt obligated to condition.

Its strange how instead of healing me, it only made me worse.

But as with any drug, I still wanted more of it.

There are rehabs for every kind of chemical dependence. Yet no one questions our health when we're addicted to flesh. Or someone's indifference to our affection.

They warn us about heroin and cocaine. And even drugs as tame as pot. But there are no warnings about the dangers of love. There are no rehabs for rejected lovers. No drug to simulate the punch of the first kiss.

I don't mind being alone. I'd just like a choice sometimes. Between everything and nothing.

Smokey xXx

P.S. My MS is good, so got nothing to report on that front, for now the beast is tamed!!!

Carers

2007-08-19T04:09:00.001-07:00

I think shop-till-you-drop and I should form an Irritating Carers Support Group. Not had anything as extreme as her recent problems - but today I had Mrs Patronising. You know the type - feet together, clasp hands, lean forward from waist, talk LOUDLY in one syllable words, chortle in patronising way at anything I say that indicates I might actually be a member of the human race.

"I was at the shops yesterday"

"Oh you were AT THE SHOPS? Did you buy anything NICE? *chortle chortle*"

"No it was mostly just things like paying bills"

"Oh *chortle chortle* you PAID your BILLS, that was GOOD"

*suppresses urge to rip her arm off and beat her to death with soggy end*

Zzzzzz

2007-08-17T05:39:00.000-07:00

Sorry I've not been blogging much recently. It's because I've been asleep most of the time, and my sleepwalking doesn't run to sleeptyping yet...sorry...will practise...zzzzzz

(Silly MS)

SCA Faire

2007-08-15T11:21:00.000-07:00

The SCA Faire went well, I met my Ex there, and erm one thing lead to another and we are now back in contact with one another, and going to give this friendship lark a go.

I can't get him out of my head, so perhaps this is the better way of doing things, no contact for a month and still my feelings are strong. And by his reaction on Sunday it must be something close ot it for him too. I am not expecting more than friendship, that would be daft, but I hope it will bring some closure.

The cats are all asleep and I have a stinking cold, so I am going to go and join the cats.

All the best

Jobs

2007-08-11T15:03:00.000-07:00

Hi all,

Sorry been so long since I have written. Just had nothing much to say, and haven't been online as much as I usually am.

I have had two colds since I last wrote in here. Been dumped and erm ... applied for jobs, had job interviews and got turned down for jobs after jobs.

I had a family BBQ today, to celebrate my birthday, it was a day early cause my father is going away tomorrow, so it kinda made sense. It went well, had some tasty yum-yums, which I ate a smidgen of, my throat is very sore so struggling to eat, but it is getting better I think.

Tomorrow I am going to an SCA Fair. I will try to let you know how that goes when I find out myself. It should be good.

Have a fantastic weekend. Be good and take care of yourselves.

All the best

Got hot

2007-08-08T08:36:00.000-07:00

Hi all, hope you are all feeling fine and if it has got hot where you are hope the heat isn't draining you too much. Yesterday we had to go and run some errands and after a few hours in the car I was completely flaked out (and we have air conditioning!!!). Thankfully it has cooled down a little today so it's much more bearable.

Well got my UTI sorted. It seems the 3 days worth of anti-b's I got given was enough to knock it on the head, so thats good. And I was fit and well and rearing to go at the Prince concert. I had a really great time and he was absolutely fabulous!!! I think it's the best Prince concert we've been too and we have been to quite a few. Anyway I won't go on about it here as I know he isn't everyone's cup of tea (eh Candy Cane?? lol). All I can say is roll on next Tuesday!!!

I joined facebook a couple of days ago, no idea what I'm doing but found a few people I know on there, I really think I am going back to my teenage years, what with a myspace page and now a facebook one lol. Oh well I am sure it will keep me entertained for a little while.

Agencies

2007-08-06T10:01:00.000-07:00

Hi All,
Being a while, cross between being busy and being very yuck. Still, had a few days of nice sunshine so the world seems a brighter place!

Bit of a moan today about the agency who do my care. My regular lady is lovely, does what she's supposed to do and generally doesn't do my head in too much. But she's off on holiday for 4 weeks (off to marry some distant relative abroad).

So the agency sent me a NEW person. NP. Looked promising. She arrived on time at 10am.

First thing she says to me is "Hope you've not got a lot for me to do. I'm really tired!" How's that for a promising start? Went downhill after that!! She took 25min to change my bed, even I could have done it in that time (ok, I would have to spend the rest of the day in bed but...). She claimed "I can't do quilts". Huh? Presume you do your own , never mind it's part of your job!

Asked her to hoover my tiny flat's living room. She huffed and she puffed (she didn't blow the house down but it would have made a good story).

Was going to get her to mop but I'd had enough of her attitude so she left. Then I checked the book and even though she got off 25mins early she's claiming she did the full 1.5 hours. Despite managing to ignore lots of things that needed doing, and on a go-slow .

Grrrrrrr... I hate it when I have to motivate people to do things. Lucky me, I think I'm stuck with her for the next 4 weeks. But if she's going to claim my time then I'm going to have to make her work, even if she's moaning and groaning.

Don't understand why some people do this job if they're going to grumble?

My flat not that an unpleasant place to be. It's not an out of 'How clean is your house?' hellish environment. Oh well, I'm going to have to put my foot down. Shame that you have to be like that with support people who are supposed to make your life easier!

Hospital visit

2007-08-01T03:50:00.000-07:00

Well...talk about two neurologists, three opinions!

First off, he doesn't think I'm suitable for disease modifiers, as I'm not having "typical" relapses (trust me to be awkward, eh?) He thinks there's a possibility I might be helped by Mitoxantrone (Novantrone) - the drug you'll hear some people referring to as "chemo". It's a cancer chemotherapy drug which you get through a drip once every month or every three months.

The idea is that it calms down the immune system and stops further damage to the myelin. It does have risks though, including potential heart problems. He didn't sound that wild about my suitability for it, but he suggested I went off and read up about it, then came back in four months and saw him again.

In the meantime he's going to get some extra information from my existing neuro...because guess what...he's not convinced I even have MS!

*hits head against wall

To jab or not to jab?

2007-07-31T11:05:00.000-07:00

I have a hospital appointment tomorrow - to see about possibly going on disease modifiers (Avonex, Betaferon, that sort of stuff). Not really sure what I want the result to be. On the one hand it would be good if the doctor says yes, you're suitable, off you go - hopefully they would work for me and reduce the progression. On the other hand, it would also be quite nice if he said sorry you're not suitable - I wouldn't have to face a future of injecting myself on a regular basis! I know I'd get used to it if I had to...can't say I'm thrilled at the prospect though!

Will keep you updated on developments...

Result... ish

2007-07-28T07:03:00.000-07:00

Well I went to the neuro earlier this week. He said tysabri was an option for the future, however he didn't think it was necessary or suitable at this minute. He also said I was doing really well physically (which I know) but he understood that the fatigue was extremely limiting, and therefore lowers my physical ability and that he thought maybe another MRI scan would be worth it just to see what was happening inside, and then see where we go from there.

Although I didn't get exactly what I wanted (as I expected) I did come away happy and reassured that I am being cared for, my treatment is thought about and I am taken seriously. It was also the first time I felt I faced my prof as an adult. I was 17 when I was first referred to him and still at school and so it never occurred to be to discuss anything with him, and certainly not to question him... I'd spent the last 17 years listening to 'adults' (or teachers) and doing what they told me. PLUS my mum insisted on coming to all my drs appointments (yes, that p*ssed me off) so most of the discussions were between doc and mum.

So after 4 years I've eventually prised my mum from my side (she thinks I'm making the wrong decision but she respects my decision... it only took 4 years for me to get there!). However, now she's arguing with me over whether to transfer to Newcastle and stay with the prof, or to stay in Carlisle and get a new neuro... who will be working under the prof anyway! She wants me to go to Newcastle, I still haven't made a decision but leaning towards Carlisle... watch this space! Whatever I do will be my choice, the hard part is drumming into my mums head that I have to make this decision based on what makes me happy, not what makes her happy. After all, this is my illness and its up to me to make the decisions that effect the course of MY life. Have you noticed that once you turn 18 parents stop trying to encourage you to think for yourself, and instead try and take over... because they know that they cant make your choices anymore.... or has that just happened to me because I was diagnosed with MS at 18?

HP

2007-07-23T08:25:00.000-07:00

This time yesterday I finished the new Harry Potter book, so my mother can take it away with her. Fantastic book, loved it. But the trouble is I now feel lost after such a big reading cramming session.

Got tons to do so will write later.

I'm still here

2007-07-21T15:53:00.000-07:00

Hey all, I decided yesterday that I would add another blog as I haven't written anything for ages, only to find I didn't know (or had forgotten) how to do a new blog - duh!!!! After a chat with Julie I have now made my way here (cheers Julie)

So what have I been up to? Nothing as MS has been playing up. My legs were getting weaker and weaker over the last 5 weeks and I had to give in and ask for some steroids (last lot I had was back in 2004), they are like my miracle pills as they get me back to 'normal' at an alarming speed, but I try not to have them too often as I know they loose their effectiveness if taken too much.

I'm ok when on them too, just get a bit manic and suffer what I call roid rage. Honestly I'm like the biggest bitch that ever lived, although I try not to take it out on the other half (well he has to help me with so much I daren't upset him lol). He took me around the shops a couple of days after I'd finished the roids and I nearly killed a kid for standing next to me with a snotty nose looking me up and down!!! I tell you if looks could kill I'd be in prison now lol

So roids finished and now it transpires I have some kind of UTI. What a pallaver it's been trying to get anti-biotics. I dropped a sample off at the surgery for the nurse to check and they said ring back later that day, which I did, and she said I definately have some kind of infection but she needed to send it to the lab to find out exactly what prescription I needed. So thats 2 days wait for those results and when I rang I was told it wasn't tested as they had insufficient patient details - errr excuse me whats that all about - someone obviously made a cock up at the surgery and didn't fill the form in properly. Anyway I was told to take another sample in. I wasn't happy as that would be another 2 day wait with the weekend in between!!!!!! I asked to speak to someone and one of the nurses rang me back and said she would give me the normal anti-b's that they give for UTIs to tide me over til the results come back. So she gives me 6 pills!!!!!!!!! Enough to take me to Monday and hope the results come back Monday or Tuesday so I can start a proper course of pills - honestly!!!!!!!

I need to get fully fit as I am off to see Prince in just under 2 weeks and I am not missing that for anything. We have waited soooooo long for him to come back to the UK and this will probably be the last time (well he is nearly 50 with a dodgy hip so he won't be able to do all the jumping and dancing around that he normally does!!!) I am seeing him 3 times in August (the other half is going in September too with his mum cheeky beggar lol).

Well thats about all my news. I did think of some interesting things to post on here but I can't remember what they were now lol

Harry Potter

2007-07-21T08:08:00.000-07:00

Harry Potter and the Deathly Hallows

Well, it arrived at 8am, up to page 287 so far - disappointly slow progress but I have had two sleeps in there! Only complaint so far is not enough Rickman action ;-)

...and no, don't worry if you haven't read that far yet...I promise not to reveal the story!

Fridge

2007-07-19T05:59:00.000-07:00

Hi All,
Been ages what with one thing and another, sort of been a little in hibernation, consequently house in bit of a mess. However I'm jolted into abit of housekeeping as my Mum is visiting tomorrow. So suddenly everything looks kind of bad. So thought I would at least sort out my fridge. Didn't realise how bad it was till I saw through my mothers eyes:

Non food items: 90% of fridge
HP sauce
Marmite
Marmite (empty jar)
Half used maramalade with lots of crumbs in
Ice Pack
Maple syrup
Jar of pickled onions (1 left)
Beer

Food items: non edible 10%
1 Pint milk- out of date 1 week
1 Pint milk- out of date 2 days
4 Eggs- out of date- got to be ages!

Food items:
Flora!!!!!!!!!!
Ewk not very exciting eh? What can I make with flora?

Note to self fridge is for FOOD! I'm sure you all have far better housekeeping routines than me.

Sorry, long post...

2007-07-18T05:27:00.000-07:00

I went yesterday to have my fitness form signed. I walked all the way to the GPs, which’s the furthest I’ve walked since getting ill. I was proud of myself, but I also felt dead, I let my GP know this as soon as I walked in his office. He wasn’t impressed. I gave him my intensely persuasive speech with a forced smile in between every sentence. He was a good listener, strangely emotionless and he didn’t budge or interrupt me once.

But when I finished he started his speech. He reminded me that I have tests, he pulled out my files and went through my case history of such bad relapses I had fits and temporary paralysis – basically telling me that if I still have the receipt I should take my brain back for a full refund and not even bother to exchange as the store must only stock faulty goods. I was on no medication and if anything happened to me he was liable.

Then just to rub it in he reminded me that most people with MS die young. He crossed his arms “ I cannot, and will not sign the form “. Just as quickly as his past negative response had spurred me on to prove him wrong, his repeat rejection had spurred me to give up. I was heartbroken. I thanked him and excused myself before he could see the tears welling up. I hobbled down the corridor where 5 seconds later he caught up with me, the flood barriers had already broken. He apologised and told me if wanted to talk about it I could come back anytime. The patients in the waiting room must have thought he just told me I had a month to live the way I was sobbing! In a similar way he had just crushed my world, but I knew he was genuine as his eyes were red and he fled before I could see them water.

I didn’t know why I ever bothered. Why do I even bother to get up in the morning and try to have a normal life as possible. Why do I try to do things to make myself happier when in the end it was just a waste? I go on everyday filling my time doing things that I can do that pleases me, I don’t complain ever about my aches or pains. I pretend everything is ok when its really isn’t, but what’s hard is believing everything is ok when it really isn’t. Its easy for the people around me to see this and let me get on with things, but what normal people don’t realise is just how much hard work this is. I give myself compliments on how well I’ve handled my situation so far, the sad thing is only I know how hard its been for me.

So why do I continue this way? Because isn’t it what you’re supposed to do? Fight the illness, stay positive, and all the other half-arse advice friends and relatives give you. Coz if I didn’t do this I would be giving up. What angers me the most is when I try too hard and cross this imaginary line MS has made, then I’m reminded who’s boss. It isn’t fair.

My boyfriend, having made clear how he feels about me skydiving, went ahead and did something he wanted to do that I was very unhappy about. But he doesn’t need anyone’s consent to do this, he does what he likes. And now his heart is so set on this thing, nothing will change his mind. I angrily envy him and it’s not his fault, yet I’m convinced that my life is harder and I deserve more happiness.

Does MS really mean you can’t have this simple privilege of being happy? But life isn’t fair. Why did I get MS and not my sister? I look at her now and I can’t imagine her going through this. She worries about how thick her eyelashes are when my alopecia has cost me a softball size bald patch at the side of my head.

I know this is an angry rant. It takes an average of 5 years for someone to come to terms with a disease like MS. I’ve been diagnosed less than a year and ill for two and I’m only 20. No matter age or experience, I think we all have a right to be angry and sad in between fighting for our life back.

It's my birthday!

2007-07-17T04:20:00.000-07:00

Who cares if I'm getting old... I'm getting presents too!

Hospital changes

2007-07-16T13:14:00.000-07:00

There have been a few changes at my hospital, for the last 4 years I've been seeing Prof Bates from the RVI and his team of nurses, they have clinics throughout Cumbria and South West Scotland, as well as in Geordieland. However, my health trust have decided that they don't want him anymore and have employed 2 new neuros. Now, I'm sure they're very nice BUT Prof bates has access to LOADS of drugs (all legal I'm sure) as he secures alot of drug trials, he's world renowned and... he likes me! PLUS I really couldn't do without his nurses, they have been a fantastic support to me, and I trust their knowledge and judgement far more than anyone at my GPs practice (sorry Dr J.Bloggs it's true)

Now the thing I'm most worried about, the thing that effects me personally, is 2 years ago P.B told me he that he'd had some bad news and a drug he'd been trialing, Antegren (now Tysabri) had been banned because it was deemed unsafe, however he was confident they knew what the problem was and the drug would be available in 2 years. Now I assume the reason he told me this was because he planned to put me on it. I had planned to ask P.B on my next visit what my chances were of getting it and use a bit of blackmail, in that he told me about it 2 years ago, insinuated he wanted me on it and I've had my hopes up for the last 2 years that something was going to get me out of this hole (which is true!)

So if I end up with a new Dr THEY won't know i was told about tysabri by another Dr, and I'm sure the world and his mother has asked for tysabri, and I don't think I'm anymore deserving of it than anyone else but I HAVE to try!

I've been on interferon for 4 years and I've not had the easiest ride on it. I was still doing my A Levels when i was diagnosed in September 03 and within 3 weeks i had to leave school, I had a list of side effects as long as my arm, one of which was none voluntary anorexia. I dropped a stone (and i don't have many stones to drop) and i caught every bug going that winter, each of which made me weaker and weaker. For the first 6 months I basically got out of bed in the morning, came downstairs and got back into bed on the couch. Even drinking a cup of tea exhausted me so much i had to lie down afterwards. I didn't start to pick up untill the following March when i was given a break by the winterbugs.. only to go down again the following winter. Now 4 years on things are a hell of a lot better. Round the house I do ok, I dont APPEAR to have MS, I'm feeling quite happy within myself, but bugger me this fatigue! Its the only thing I haven't been able to conquer and I'm pretty sure a big chunk of it is down to the interferon. obviously not all, but enough!

Anyway, I don't like to dwell on all that crap but i have to set the scene for you so you understand where I'm coming from. I'm 22, I still live with my parents, no employment prospects healthwise, no employment prospects qualificationwise, no driving licence (you've heard that gripe), no marriage/family prospects, no money for a house, and no idea how i could afford to live independantly. All I'm asking for is a chance! A chance at life! I can't stay treading water, I have to do something!

Now i know all this sounds a bit self pitying, I am doing things to try and help myself, but i just need that extra bit of oomph! I've been learning how to make jewellary with the hopes of running a buisness from home. Ebay store, jewellary parties etc etc but i still need a consistency of energy to do that. I've been having great day dreams though about my new enterprise... making a catalogue... designing a website... owning a shop and getting my dad to work in it after he retires and then I can tell HIM what to do... aaah that'll be the day! I think that's actually my favourite daydream!

Maybe I'll post a few photos of the stuff I've made... and you can all tell me how clever I am and fluff my ego

see you later alligators xx

Let's party!

2007-07-16T09:42:00.001-07:00

LET'S HAVE A PARTY!!!! (but shh, I have a migrane)

IT'S MY BIRTHDAY TOMORROW!

Jumpin' July!

2007-07-16T05:01:00.000-07:00

Guess what I'm doing at the end of the month... I'm going skydiving!

Yep, throwing myself out of a plane 10,000 ft up in the sky and plummeting to earth. Exiting ay? Not something you do very often is it.

I've always wanted to do something like that, strange coming from a person who isn't fond of roller coasters and is aquaphobic.

I always thought you need a good excuse to do a thing like that, and though most people wouldn’t think so, actually it makes it all that more special. I'm disabled, I've been in a wheelchair and unable to walk for about 7 months now, my life has come to a stop, the only exiting thing that happens to me now a days is scrubs season 6!

So when I opened the latest MS Trust newsletter out popped a little leaflet that said, " Jump In June ". Wow.. Perfect opportunity!

I thought long and hard, I pictured myself in the plane getting so nervous I might just wet myself, would I actually be able to go through it? Then the thought of leaning out the plane and just dropping, just letting go of everything and flying, seeing the earth from a different point of view, feeling so alive its surreal.

This is exactly what I need.

So I went online registered myself, booked a date, then texted everyone I know and before I knew it I've already raised £1,130 for the MS Trust! (a lot of very generous people I know, and don't know for that matter )

Feeling quite smug about myself off I went to my GP to have my fitness form signed... he said 'NO' (insert sound of atomic bomb dropping on planet rider) que? Che cosa? Ce qui? WHAT? How can this be? I've been in touch with both the airfield and the MS trust and both have told me having MS is no problem!

This was his reason: I have a series of tests coming up (another MRI, etc) and he wants to wait until he gets the results. Which wont be until next year the way NHS goes about things!

I look back and I can't believe what a lame excuse that was. I'm only having more tests as they want to find out how many relapses I've had. I should've fought my case but I was too shocked. There should be no reason for him not to sign unless he honestly thinks I'm too ill to do it.

I was so annoyed, I was determined to go back and show him just how well I was, I'm going to ditch the wheelchair and WALK into his office!

This new found faith in myself gave me such a boost I went to my next physio session minus my wheelchair and managed to walk 5 steps all on my own! There were cheers and clapping from all the physiotherapists and I was even told that I'm better than my crutches so I can ditch those too! Instead I now use two long sticks which have been helping me push my walking abilities further.

I feel so good about my progress that I'm going back to my GP tomorrow and make him sign that form! I have a whole speech prepared and everything...

If it doesn't go to plan, watch this space as his address will be posted and anyone who wants to join me stone him is welcome!

Countdown

2007-07-15T01:30:00.000-07:00

I'm feeling poorly at the moment (combination of things, far too boring to go into here). I have to rest. Rest Wednesday, rest. Why? Because there's a very important event coming up, which I have to be at full strength for.

Next Saturday - yes, a mere five days away...the final Harry Potter book is coming out!!!!

No need to camp outside WH Smith at midnight at least, as those nice people from Amazon will be delivering it to my doorstep on Saturday morning. I need to be fit and well to read it though!

Next weekend, expect many cryptic comments about Harry, You-Know-Who, Snape, and so on!

Care companies

2007-07-08T09:16:00.001-07:00

I hate care companies.

Care companies are rapidly taking over from my brother Pugsley as the main target of my hatred - the company that comes to me, anyway.

I was supposed to have a carer at 9 this morning. Breakfast, a shower, make my bed. Too much to ask? It would seem so, yes. Too much information I know, but I have my period. I got out of bed about 7 and went back to sleep on the sofa, woke up again at 12.30 (I do these things, I have MS). No carer, blood stain all over sofa!!!

In the last two weeks, there have been five times nobody's turned up. I'm lucky that I'm with-it enough to know they've not come and phone up - a lot of their clients have dementia and wouldn't be able to. There's the little detail though that I have MS and I shouldn't have to cos the stress makes me worse!

It's now 5.30 pm and I'm waiting for a carer to arrive "some time", as I told them that yes I did still want a shower please!

Budge over Candy Cane and Naughty but Nice, I'm joining you in the Grumpy Gang!

A bit crowded!

2007-07-07T22:55:00.000-07:00

Hello everyone, good to meet you! I'm the latest recruit to the Ms X stable and I'm looking forward to chatting about what I've been up to (in the breaks between trying to kill my brother Pugsley, of course.)

Speak soon!

Another new kid!

2007-07-04T05:04:00.000-07:00

Hi all!
Yes, you have yet another Ms X member joining you. Anyway I thought I'd say hi, I've followed this blog for a while now and I love JJ's and the chatroom, it honestly fills hours of my day and somehow my square arse isn't so numb anymore. So, I'm glad to be a part of it!
have a great day everyone! Hope to hear from you all soon.

Joining Candy Cane

2007-07-01T05:50:00.000-07:00

I am having a rough time MS wise at the moment and I am slowly reaching the end of my tether.

Just wanted to let you know I am officially joining Candy in grumpsville, so move over Countess grumpy Bum and make room for me (unless you are no longer grumpy, then vacate the premises!!)

Thank You.

Glastonbury

2007-06-27T10:55:00.000-07:00

Well I survived the Glastonbury weekend!!! Might be something to do with the fact that we were seated in the comfort of our own home watching and taping it all (thank God for Sky+). The last part has just been recorded and in total it filled 20 DVDs!!!! It was great and my only gripe is that I wasn't there but I don't think my wheelchair would get on to well with the mud. I did get to do a muddy glastonbury in my dark and distant past, and must admit that I didn't enjoy the mud. That was our festival year when we did 3 weekend festivals in 4 weeks (one of them being in Scotland) and then a little break before the 4th one. That was a tiring but very exciting summer.

Nowadays it's just indoor, mud free gigs for me, but there's still the thrill of seeing one of your faves up there singing their little hearts out just for you (or so it feels anyway).

So what will I do now all of Glasto has been viewed. I will look forward to T in the park next weekend!!! yay!!!!!!!!!! (And I don't have to do the long drive to Scotland this time - double yay!!!!!!)

Grumpy...

2007-06-22T06:50:00.000-07:00

but gorgeous.

Thats right, I'm grumpy! I have nothing else to say, but i wanted to share my bad mood with you all! Bah Humbug!

Cats grrrr

2007-06-21T14:51:00.000-07:00

I swear my cat is trying to kill me today.

He keeps wrapping around my feet as I am trying to walk, lying on the stairs and now jumping on my head.

Oh, and he has turned the computer off twice, chewed the wire to the rooter (thankfully my father has spares of almost everything computer related), brought home a mouse (the animal kind), and ran out the front window and across the road with a pair of my knickers I was sorting out to put in the wash. They were dirty and old, totally non-sexy ones, I am wearing pads at the moment, so need comfy ones that hold them in. NOT for the whole street to see.

A whingy one

2007-06-21T05:47:00.000-07:00

Well here I am with my second entry (and hopefully not my last) but I am sure that this entry will probably upset some people (sorry in advance if it does.)

I live in a very small cul-de-sac and live in the second house in from the main entrance. There is a school situated on the other side of the main road that our close leads off of, about a five minute walk. Now why would this bother me,you ask, being that distance away, well it's not the school but rather the mother/fathers on the school run. Yes THAT problem.

I am sorry and I haven't children of my own so do not have the problem of getting them to school BUT why do they have to park right outside my living room window. There is a new housing estate next to the school but they can not park there and have obviously received tickets or been clamped doing so. So they have decided to park here instead, even though it is clearly marked 'no parking' here too. They even have the cheek to park in resident's parking spaces or right under the no parking sign.

This can cause me numerous problems if trying to get out in my wheelchair or I come home from somewhere and one of them is parked in my space (which I need as I have the space to get the wheelchair down the side of the car easily). If the council would get their act together and come and replace my lockable post (which was incidently knocked down by one of their contractors) then this wouldn't be a problem. As well as this we have to put up with some of them looking straight in our window, screaming kids, or even better them screaming at their kids.

I have made numerous complaints to the council who's signs they are, but they say there isn't much they can do, how about contacting the school so they can send a note home to all the mums/dads or better still come around and give them tickets or clamp them here. gggggggggggrrrrrrrr

Sorry rant over and I suppose this is as much a moan about how useless the council is (aren't they all). Thanx for reading lol

Hi fellow bloggers

2007-06-17T15:16:00.000-07:00

Hey Hey my first post here and I really hope I am doing this right and I don't muck up this whole blog. Just wanted to say a quick hello to all the bloggers here - I have been reading your stuff and you are all great. I just hope I can be half as interesting as you all.

Now I just have to remember how to get back in here lol

On my soap box

2007-06-16T06:02:00.000-07:00

I’ve been sitting watching the news the last few days. No that is wrong; I watch the news most days, for the majority of my life. It is just the last few days events that I want to mention, that leave me awake at night, staring into the darkness, stroking the cat and pushing him of my chest again and again.

OK, one is “Action threatened over air fares” where the Office of Fair Trading has threatened to take legal action against airlines in an attempt to tackle what is says is ‘misleading pricing’. Whereas I agree that the pricing is often misleading, and what you thought at first was a bargain turned out to be no better because of hidden costs. But it is up to the consumer to ensure that they know what these hidden costs are before purchasing. If they find out, and then another cost is added on they can argue their cases. We all know, or at least we all should know, that when it comes to things like air fares there tends to be hidden costs, that they may be quoting fares without including extras such as taxes for years. So;

Why now is the Office of Fair Trading giving a crap?
Will anything actually change?

The good news is Easyjet, Ryanair and Thomas Cook are saying they are 'working towards compliance', but to find out what this compliance is has proven to be more difficult, although this morning the BBC News website has provided more details. Basically it seems that travel companies have three months to include all fixed, non-optional costs in their basic advertised prices. Which I agree whole heartedly would be a good thing, what is bothering me is why OFT decided to do something now, and will they really take companies to court to make the changes if they are not happy with the progress, or will they extend the deadline as they have a history of doing?

“Patient Bleeds Dark Green Blood” - This story came out as a team of Canadian surgeons got a ‘shock’ when a patient they were operating on began shedding ‘dark greenish-black blood’. The patient’s leg surgery went ahead successfully. The blood color was due to large doses of Sumatriptan (A migraine medication) which caused a rare condition called sulfhaemoglobinaemia where sulphur is incorporated into the oxygen-carrying compound haemoglobin in red blood cells.

Ok so that’s the news story. According to the science fantasy television series, Star Trek, Mr Spock had green blood because the oxygen-carrying agent in Vulcan blood includes copper, rather than iron, as is the case in humans. Mr Spock had a human mother, and a Vulcan father, from whom he inherited his inability to make sense of human emotion, as well as his green blood.

Why am I mentioning this story? First of all because I found it fascinating and secondary I struggled to believe it was true. But what I found frustrating was that no one seems to mention whether this green blood was causing the man harm, whether he is coming of the drug that caused this. What the risk is for other people on that drug. If I was on that drug should I be worried?

Ok next news story (I will try and make the rest short) is the problems in the Gaza Strip. What I want to mention is not the details of what is happening there, who I think is right or wrong. But it is the other countries. The ones who feel like they can take a moral high ground. They can sit in their comfortable offices making quotes like “British Foreign Secretary Margaret Backett stressed it would be wrong for Hamas to benefit from its seizure of power”, South Africa called for the “unity government to be restored”, Sweden is applauding Abbas’s decision to nominate political independent Salam Fayyad to form an emergency government. The USA has already given full backing to Abbas, saying “he acted well within his lawful authority and we fully support him in his decisions to try to end this crisis for the Palestinian people and to give them an opportunity to return to peace and a better future”.

Who are we (the British) to say who is right and who is wrong. We have done the same thing in the past; it is what has made us who we are today. Did these people in power not learn about the English Civil Wars in the 17th Century? Where we butchered one another, executed a king. The Bishops Wars 1639-1640 were Charles I tried to push opinions onto others, I think the Scottish Church. 1642-1651 when there was HUGE tension between the throne and parliament. Without these wars we would not have the democracy we have today. We would not have the power to sit on our back sides judging other countries, muttering how awful and barbaric they are when WE ARE NO BETTER?

America had its own Civil war in 1861-1865 and they were no better than the rest of us. The French in 1871. Russia not that long ago in 1918. All through history you can see where countries have had Civil wars, and although I to not think any war is good, but sometimes wars are needed and just.

We should keep out of this war, we have no place to join in, and we have no right to comment. We should remember that the only reason we have such power is because we are in the shadow, in the shadow of America who says we can have this power and becauce we were once a powerful force with a great empire. What are we now, what power do we really have and deserve to have? We can't even defend our own country!

Ok that’s me off my soap box. Health wise I am good, my bladder is on over drive, I think it is on caffeine high, it is always so active, I don’t know where it is getting all its fluid from. I have pins and needles back in my feet, so I am happy, they went numb for a bit so at least now I can feel them.

Sorry for my long rant and thank you for getting this far

Love ya all

Smokey xXx

I am still here

2007-06-09T12:16:00.000-07:00

I am still here ....

I first of all lost my password to write in here, then been busy falling in love.

I haven't got long as going out in minus ten minutes.

Just thought I would let you know that I am good, and I will write again

Colouring my hair...

2007-06-08T05:24:00.000-07:00

Hi there,
Decided to try and add some highlights to my hair - so I got one of those box kits you can do at home. Cant be that hard I thought...

Followed the instructions

1. Dampen hair - which means having to try and wet hair in sink, without giving yourself a bath at the same time.

2. Mix together bottle A and sachet B - if you can get them open it would be easy!

3. Divide hair into sections and cover with mixture using wand supplied - ewk panic arms are killing me by this point, and I'm tierd so one eye is going bit blurry. So trying to pick chunk size strands to highlight whilst wearing plastic gloves is no easy task.

I know I haven't got the highlights in the same place on either side of my head but not much I can do about it. Its taken me ages and I'm bit concerned as supposed to leave it 10minutes form time of last application. However its already 25min since I started and don't want my hair to go funny. So I throw the wand around a bit, sit back and wait...

4. Rinse hair then dry - dum de dum, moment of truth, Actually not bad , not bad!
Quite impressed some subtle hints of colour without looking like a 3year old has been let loose on my head. Looking good :)

How clever am I!

2007-06-06T06:46:00.000-07:00

I did it! I did it! I got the tube in the little hole!!!
... Its not as little as it looks you know!

Ball Bags!

2007-06-05T02:45:00.000-07:00

Well, it's Tuesday 5th of June, the day of my driving test... only guess what.... I had to cancel!

Unfortunately this time it's nothing to do with my health.. in fact I wish it was! My big brother died in a motorbike accident 2 weeks ago, and frankly there is just no way I could get behind the wheel of a car at the moment. Not to mention I'm bloody knackered!

It took 10 days for us to plan the funeral, with the post mortem, bank holiday, inquest, and the obligatory family feud. By the time I got there I was dead on my feet.

The stress hasn't so much effected my arms and legs, which is lucky as I now have 2 children and a sister-in-law to help look after. Unluckily, from the moment the policeman knocked on my door to tell us about the accident my bladder went into spasm. My sister-in-law also has ME so she is my main concern. (And yes funky mango.... I know if I don't look after myself I'm no use to anyone else)

On Friday (just gone) I went 24 hours without a pee, ended up in casualty by 10pm... had to wait another 2 hours before they hooked me up with a catheter and you should have seen the bag when they had finished draining my bladder... it literally took the piss! There was 500ml in the bag... and a remaining 100ml in my bladder by the time they had finished at 2am (frankly i didn't care about the last 100ml, I just wanted that bloody tube out my wotsit and to crawl back into my nice comfy bed). Apparently our bladders are designed to hold between 350-450ml of urine... man I must have been ready to pop! I'm surprised noone asked when i was due!

Anyway, this morning I've been to the wee nurse to learn how to self catheterise. I know lots of people fight this and really don't want to do it. But hey, what's all the fuss about? I mean... I've been having periods for 10 years now so I'm quite used to aiming 'down there' as it were. noone has to know what you're doing. you can hide the wee lipstick catheters in that little pouch at the back of your handbag were you keep your tampons (and cigarettes when your parents still don't know you smoke at 21 :-s ) and you go off and do it in private. I feel in no way undignified, or less of a woman. In fact by doing it i feel i can reclaim being more of a woman. It's better than being sore, uncomfortable, prone to infection, and worrying about dribbly bits when you're having sex! (I blame him.... messy bugger ;-) ). C'mon girls, get catheterising! (Sorry I'm not encouraging you boys but frankly you have it easy, yours is much more accessible and dangly you just gotta stop being so squeamish!)
This might seem like a strange entry, jumping from my brothers untimely death to catheters but its been a loooong and eventful 2 weeks. i would just like to finish by paying tribute to my big brother, he was a miserable git but I wouldn't have had him any other way. Goodbye Patrick, I Love you xx

Bank Holiday

2007-05-28T10:28:00.000-07:00

Howdy, its a Bank Holiday a rainy Bank holiday, would love to report been up to non stop excitement today but sadly no such luck. It seems I like most people I know have been stuck in with the heating on, watching rubbish tv. Still at least there was no football on :)

For those of us who find it difficult to get out and have a social life in the more conventional sense of the world the joolys joint chat room is a fantastic place to waste away the hours. To me its like the sofa in the tv series Friends, you know your going to be able to sit down, put your feet up and chat with friends. I will always be thankful there is a place I can go and be me. So if you haven't been in yet try it and see (No haven't been paid for this plug honest)

Look forward to hearing what my fellow blogers are doing this weekend obviously something far more interesting than me!

Health and Safety

2007-05-21T08:08:00.000-07:00

Hellooo, My rant today is about the seemingly crazy world of health and safety that disabled bods can sometimes find ourselves in. Had my physio appointment today, for which they provide transport to pick me up. For which I am of course suitably grateful. However, as I use a wheelchair I'm required to be strapped in using five separate points. Yes that's FIVE. Truly, if we ever got out of 2nd gear and picked up speed and went upside down I would be in no danger of going anywhere.

After getting strapped in by 4 separate belts to the floor, which are then tightened to within an inch of their lives (so much so my tryes actually depress to the floor with the pressure) I get your average three point seat belt as well. Then the driver gets in and DOESN'T put on his seat belt, and the escort who sits with her seat facing the rest of the bus DOESN'T put one on either! How stupid is that?!! If we have any sort of accident she's going end up all over the passengers anyway!

Think this rule thing also goes for other areas. When I moved into my flat it already had a wheel-in shower, which is great. But under Health and Safety (so the plumber told me) my shower was only allowed to be at a max of 40 c. Please note that I don't live in a care home/hospital etc. but a private home.

And I did dislike very much some rule or other being applied to me when I didn't need it. I tried arguing to the plumber that I found the shower too cold and would like the option of being able to heat it up if needed. (Like all other people in the rest of flats can do). But No... However I sorted this out after a few weeks by taking it apart and fiddling with the controls with a screwdriver LOL! Made me wonder where such rules are made up, and how sometimes as a disabled person we have our freedom on certain issues taken out of our hands under the pretence of Health and Safety. You ARE disabled you must take a COLD shower for the rest of your life!!!!!!!

One society

2007-05-14T09:35:00.000-07:00

Had a really positive shopping experience today, when I was out and about not thinking of anything in particular and kept seeing lots of people with different disabilities.

*Women in scooter (crazy lady going really fast!)
*People with walking sticks/crutches
*Man who was blind using white stick
*Lady with a push along 3 wheeled walking frame
*Manual wheelchair user

Just good sometimes when you're out to see other people that live in the same area with different problems just getting on with the everyday stuff. No one was staring, no big deal. I only went around a few local shops. Just made me think that you should be able to see disabled people everyday as part of an inclusive society. Anyway, made my day :-)

Peeing in the wind

2007-05-10T07:16:00.000-07:00

Do you ever feel that life is conspiring against you? I'm starting to feel failing is inevitable.

I started learning to drive in October 2002 when I was 17... unfortunately I didn't have the greatest driving instructor (more interested in taking my money for as long as possible) and when I had my first relapse in Feb 2003 I decided to take a break from driving, get better, deal with the bombshell that had just been dropped and attempt to concentrate on my A Levels. So anyway, roll on June 2003 when I had been told I didn't have MS, I was fully recovered from my first relapse (although looking back it was actually my 3rd) and my exams were all over.... I found myself a fantastic new driving instructor, whizzed through my manoeuvres and had a test booked in mid September. GREAT!

... If only life were that simple! August 2003, second relapse, oh sorry diagnosis was wrong... drugs by September followed bad side effects to drugs and a huge relapse, test out the window and I went into hibernation......

June 2005, nearly 2 years has passed and I'm finally feeling strong enough to start getting some building blocks in place. You know, driving, going to the gym.. just generally trying to build an adult life after having being cared for by my parents for nearly 2 years. But driving first! Driving is the key to my independence! Without it I wont be able to get my own house, or a job!

So away I go, I take my theory test first, 35 out of 35, don't know what i got on the hazard perception test... but who gives a toss its a load of crap! Start learning to drive again, after 2 years it's really starting from scratch. Test booked in Sept 05, I feel better than I've felt in years! ... until September of course.. another winter of bugs and hibernation... driving on hold till January 06

OK, January, this is it this time! Cant get a test till April but that's plenty of time, I'm quite relaxed and confident about it so I plod on. The good news is i did manage to take that test.... the bad news is there was an incident with a mini round about and i failed (deservedly). But the guy did say I was a good driver and I should go for it again, so i booked the earliest test there was in June... yes the waiting list is that long! Roll on June 10th, it was England's first world cup match at the same time so I would virtually have had the roads to myself. Too good to be true? Of course, in the early hours of June 1st I was rushed into hospital and my appendix was taken out. I did ask them if they could wait a fortnight, or give me an epidural so i wouldn't be effected by the anaesthetic but no, anaesthetic it was! I did offer to just lie really still but they seemed to think i was joking... and to be fair, i did just want the damn thing out of me.

So anyway, June 10th cancelled, August 17th booked.. got back on the horse in early July only to discover I have problems with my eyes when I move my head. I had to stop the lesson half way through cos i was feeling a bit pukey and disorientated. Anyway at this point I decided to take a rest, let my eyes heal and start again after Christmas

Bloody hell this is a long entry! sorry guys, we're on the last leg i promise

So to bring you up to the present day I started again in March 2007, January and February weren't very good months, and you need full brain and energy to drive as intensely as you do in lessons and tests. I've done ok, it's really hard starting again because you know everything, but it's become all jumbled up. When you first learn to drive you just do as you're told and build up step by step. I had a test last week, but i failed it cos i panicked in the last 5 minutes, the guy said I was a good driver (AGAIN) and told me to rebook. And I have, its in a week or 2.

So to bring me to the point of this ridiculously long blog entry (Its taken 3 days, 2 vanilla slices and 6 cups of tea to write)

Now I have a cold. My test is only few weeks away, and I'm sure the cold will be gone, but how badly fatigued am I going to be after? And how long will it last? And my theory test runs out in early June, so then I'm going to have to do that again if I can't take this test.

So you see? I really hate to sound like I have a victim mentality but I've had SO much bad luck over the last 4 years. I laugh at myself when I cry and hear myself sob 'but It's so unfair!' It's an old cliche... but it really is unfair. I am trying my best, I really am! But sometimes My MS just gets the better of me. You hear all this crap about fighting you're MS.. but you can't fight an invisible army. I'm trying my best to get on with life... but it's hard, and when things go wrong it's not my fault. And the one thing that really gets the better of me is that it's not my ABILITY as a driver that is the problem, its just the nature of having an unpredictable disability such as ours.
Don't worry I wont give up, I can't afford to, but god it's hard to keep going sometimes.

Well.... well done to anyone that is still with me. I know its a long entry but there was really no way of expressing how i felt, and making my point without going right back to the start. Next week... extracts from heathcliff

Disabled maths

2007-05-07T07:09:00.000-07:00

1 + 0 = 2

Why is it when your out shopping in your wheelchair, people assume that the person next to/behind you is with you? Maybe its your carer etc. Got annoyed today went out to my local supermarket and got a few items, and the lady straight away hands the bag to the man standing behind me! Helloooo, it's my shopping that I've just paid for thank you very much.

1 + 1 = 1

And while I'm moaning about shops, which is one of my favorite passtimes, why is it when you're asked if you would like "all your shopping in one bag" and you say 'yes', do they then proceed to put it into 2 bags so 'its not too heavy'? Honestly, it's sitting on my lap so 1 bag or 2 really does weight the same! It doesn't magically make it any lighter.

Shop til you drop!

2007-05-06T11:22:00.000-07:00

Went out today, to get a birthday present for a friend. What can you buy someone who's got a house full of stuff and lives on eBay?
Anyway after much searching I saw some lovely glass candles, with rows of beads and buttons around the bottom. Great I think, its a nice gift, gift once you have used it its gone! It wouldn't clutter up your cupboards for years to come.
So carefully I balance it on lap and go to pay for it. Lady wraps it up in bubble wrap and we bump bump all the way home in my electric power chair. Make it all the way home reach up to get the mail out of my mail box and guess what happens.. yes you've guessed it I DROPPED IT!!!
So its true you can shop, till you drop it, looks like I be going out again on Monday to get another one then.

Oh crap

2007-05-04T07:54:00.000-07:00

I've just signed onto here to write a fantastic thought provoking, inspirational, uplifting and profound blog entry....... then I get one phonecall as I'm signing in and by the time I get here I've forgotten what it was I was going to write about
Oh well, maybe next time xx

To buy or not to buy

2007-04-29T14:05:00.000-07:00

Just an update on my fashion victim status.
I found some nice low wedges in 2 different colours. I couldn't decide which colour to get, and in view of the hell i went through trying to find them..... i got them both.... and a handbag.
I knew you would all understand

Licence plates

2007-04-23T02:41:00.000-07:00

I have decided to collect licence plates from around the world, so excited as this is my first collection of anything I think.

Need sleep, so going for a nap

Morning all

xxx

Life is playing games

2007-04-20T09:55:00.000-07:00

Life is playing games with me, teasing me with evil tricks, giving and taking away, flashing dreadful looks. When I finally have it figured out, he turns everything upside down, never giving me a moments peace. Spinning me around like a top. When I finally land, though not on my feet, I don't know where to turn. Can't distinguish left from right. Bottom from top. Inside out or right side up.

Empty pages

2007-04-19T07:40:00.000-07:00

Empty pages in my diary at last!
Now pass the chocolate, a mug of tea and my fleecey blanket and I'll go into hibernation for a few days
See you all soon xx

Update...

2007-04-12T07:39:00.000-07:00

OK yesterday I went to the Joke-Centre (Job-Centre) and as I knew it would be, it was a complete waste of time. The said they were going to, and I quote:

"We will look at your Jobseeker's Agreement to see if it is still helpful. We will talk with you about jobs, training and other ways of helping you back to work. We will also tell you about help you may be able to get when you find work."

What they actually did was do a job search on their databases, which I do every week anyway. They did not even look at my "Jobseeker's Agreement". Nothing was talked bout, jobs or training or anything at all helpful. I asked about possible training, they said some colleges offer some courses at a discount, not very helpful. I also asked if they would look at my C.V. and see if there was anyway that it could be improved, they said "we do not have the resources for that". I am like ... what the heck are they there to do ?

I want their job, all they ever do is sit there and tell people to look for their own job and there is no help they can give. I could do that, I would make a DVD and put it on repeat saying "Don't ask me, I have no answers, look them up yourself" and go to the local pub.

Last night I went to dinner for my fathers birthday. It went well although uneventful. We went, we ate, we came home. That was it, nothing fun, good, but then again nothing bad either. The company was lighthearted and good as a whole.

Enjoy the rest of the week. Arnt we getting lovely weather !!!

xxx

I'M NOT GOING MAD

2007-04-11T13:58:00.000-07:00

HONEST
for any of you wondering why i wrote the same post twice... it's cos for some reason after i did the post it slotted in BEFORE 'i get accused' not after. the ironic thing is in an email i recieved earlier today, i did a little quiz that told me i was 'very observant'! clearly that was 'very innacurate'
smokey also couldnt find my post... wonder what she got in the quiz

(i know the punctuation isn't very good but its 10pm and i cant be bother to press the shift key)
(( except for brackets and exclaimationmarks cos i likes em))

Fashion victim

2007-04-10T13:41:00.000-07:00

Ok, this seasons fashions are conspiring against me to make sure i go naked for the next 6 months.
Mini dresses???? Platform shoes???? Are you mad????
At least noone will be able to see my Injection Site Reaction marked legs (and after 4 years they are marked!) when I'm lying face down on the ground. Any so long as my mini dress only hitches up over one bumcheek... the good bumcheek it'll be fine! (I can only inject the right side)
Thank god for maxi dresses, leggings and ballet pumps, thats what I say!

I get accused

2007-04-10T13:06:00.000-07:00

Thank you Divvy, Candy Cane and the forever falling over Funky Mango for the waves.

Candy Cane you need to take it easy girl ... get some free spaces.

Today I went to the garden centre, one of those old fashion ones that sell pot plants (Plants in pot not pot in a tub), and compost. Not one of these new ones that sell ornaments and wind chimes and stuff like that. I got accused of stealing !!!

I was wearing tight jeans, boots, and a long t-shirt. As I cannot carry the compost bags at the moment and a pot plant would not fit in my tight jeans I have no idea what I apparently nicked and where the hell I hide the blasted thing.

Anyway the manager came out ranting at me to “put it back”. I just stood their blankly between the the HUGE pots. When the manager came right over, still shouting, I asked him where I have hidden whatever it is I nicked. I did a twirl and said “see, no where to hide anything”. He smiled at me and said he would be watching me then walked off. Like what the feck was that all about (apologies to readers who may be offended in any way) ?

I have the joke centre (jobcentre) tomorrow, which I hate, but at least they now have someone who is better at helping me, well that is what they have said in my letter. I reserve judgement for now but I lack any hope really. Will let you know how it goes.

I also got to go out for dinner tomorrow as it is my fathers birthday. It should be ... erm ... fun ? :-\ Once again I will tell you know it goes, if I come out of it sane enough to do so.

Right I am off to see who is in Jooly's Joint

Have a great week and fantastic health

xxx

Ok, that's it

2007-04-10T12:59:00.000-07:00

I've had enough! this years spring fashion seems to have conspired against me to make it impossible to buy any new clothes.
Mini dresses??? Platform heels??? Are you mad??? At least noone will be able to see my injection site reaction marked thighs (and after 4 years they're a pretty picture) while I'm face down on the ground. And so long as the mini dress only hitches up on one side you'll see a nice peachy bumcheek! (I can only inject one side, can't reach the other).
Well, all i can say is thank god for maxi dresses, ballet pumps and leggings! Although i do still fall over in ballet pumps but I'll save that for another blog entry

No empty pages...

2007-04-10T11:16:00.000-07:00

Still no empty pages in my diary......
I happen to know another young lady with MS has just discovered dress shopping on ebay... you go girl xxxxx

I dare you all

2007-04-09T10:11:00.000-07:00

There are a couple of things I would like to say in this blog entry.

Firstly the blog entry I left yesterday was written during an emotional time when life seemed to be getting to much. I was getting distracted of the point.

Secondary I am feeling a bit disheartened by this whole experience, it is the same very very very few people who are leaving comments and actually blogging. So if you are reading this leave a comment so I know that I am not writing this in vain. You do not need to get an account, you can leave an anonymous comment although that takes longer to appear apparently. Go on give it a go, I dare you.

This is for everyone, lets make it fun for all.

I am so lethargic today and can't seem to shake off my headache. My computer is doing seemingly random updates so having to keep restarting it.

I have nothing more to add for the moment,

Hope you all are having a great long weekend

Take care

Confused Female

2007-04-08T09:48:00.000-07:00

When do you stop hurting ?

When does a broken heart heal? People say to give it time, but sometimes it is these same people who then drag out the pain by throwing salt in the wounds time and time again.

I don't want to bore you with tales of a broken hearted female, but I long for the time when I can think freely without wanting to turn to a drink to soften the pain, without me waking up in the middle of the night just to turn over, cry and fall back into a fitful sleep.

How long does it take ? The answer "time", it is always time. Good old time can do so much, but it lacks personality, it lacks the ability to give me a hug and make everything ok again for me. It cannot turn wrongs into right, nor can it heal scars that run deep in the sub conscious. Time, magical and mysterious, constant and reliable, but does it really do any good ?

"You'll be alright duck" - Will I ? Who are they to say for sure ? I don't feel like I will ever be alright again.

I have my Grandmother staying for a week or two, perhaps three, I don't know and neither does anyone else it seems. She is a lovely woman, but she never stops whining. She finds things to complain about all the time, even when there is nothing she still manages to find something. Her mobility isn't great, far better than it was a few months ago though, so going out anywhere is like a military exercise !!! I know it is not her fault, but with me having to work out whether I can go somewhere and do something is hard enough, now we have a second person who is worse than me. It gives us both something to giggle about.

We are quite the fashion parade as when we go out we take our sticks, hers is blue strips and mine is purple and pink circles. We may need to have sticks but we won't be dull, it's not in our nature you see ;-)

Happy Easter or Passover or whatever you are celebrating this week.

Have a great week and good health, or great health and a good week.

All the best

Smokey xXx

Yey

2007-04-02T11:18:00.000-07:00

yey
i got the first post in april

April fool's day poem

2007-03-31T16:48:00.000-07:00

Today is April fool's day

And my little joke on you

Is not a whoopee cushion

Or some phony dog poo-poo

It's not a made up story

For which you'll surely fall

It's not some plastic vomit

Or a Richard Hertz phone call

My April fool's joke on you

Is a more conceptual thing

Than flies inside your ice cubes

Or a little squirting ring.

My April fool's day prank on you

(Oh this will really show 'em)

You've already suckered for it,

THIS IS NOT A POEM!!

I love my friends

2007-03-27T05:57:00.000-07:00

Last night I wrote a letter to a very dear friend of mine who lives some distance away from me at the moment. I would like to share with you an excerpt from it, as it wasn't until I wrote it down that I finally "got it", understood what it was I was trying to understand.

"... The one thing I have learned about happiness, it will never last pretending you are not you. Somehow the truth will arise and all that you hide will show through. Sooner or later, one way or another, something in your life seems wrong. You go to bed unhappy and awake the same, repeating life's mistakes too long. One day, to yourself, you begin to question "Is this who I am and wish to be"? How will I choose to live the rest of my life, till death comes? Most people wish to be at peace with G-d, oneself, and those we love. Frequently taking a look at our past.

Insanity is often defined as "doing the same things again and again, but expecting a different result" the seeming inability to learn from past mistakes. To learn you must look at who you are, really are. Not the mask that you have worn for so long as a disguise and protection, that you stopped long ago remembering what was under the mask, then eventual forgot you were wearing a mask at all.

In primary school when you ate the paste, it wasn't because it tasted good, it was because it was forbidden. Every night used to be primary school, and every drink, drug and person the paste. In first grade when you told the boy, you didn't do it to hear him say he liked you. You did it because you knew it was hopeless. Everyday was first grade, every drink, drug and person him.

...

That is the evolution of survival, that surviving depends on amnesia. The innate tendency to discontinue loving anything, anyone that is gone. That is life. That is its sour seed that grows inside each of us. This is the frailty of life. A paradox of loyalties that invariable cease the moment we can't use them anymore. This is the truth of happiness. A swarm of bees attacking as we catch the bits of nectar that drop. There the future was writ in forbidden paste on primary school lips. Our paradise lost before we ever knew we had them. ..."

Obviously I cannot go into the problems that led me to write this letter, at the time I wrote it. All I want to say is, be who you really are and do not hide behind any masks, otherwise you risk your happiness and sanity. I have lived behind a multitude of masks myself, and always had a reason for them. "It's a psychological disorder", "It was the drugs", "The drinks", "I had to for my boy friend", "It's to help me with MS", again and again I would put on a mask, build the walls, and cocoon myself in pure insanity. Again and again I refused to see the pain and sadness was due to the masks and not from what I was trying to protect myself from.

I missed out on some of the apparently "best years of my life" because I was hiding. I can now see that I was hiding from myself, after all I am my own worse enemy. I just ask, and beg that you do not make the same mistakes I have. Be who you are and be proud of that. You may flaws, you may consider you have more than the next person, but they are part of you, they make up the building blocks of you. You should be just as proud of your flaws as you are of your achievements, because you become stronger by learning from your mistakes than do from the things you get right.

To all my friends, thank you. You have supported and chided, laughed and led, hugged and yelled at me. For all these acts I am so grateful to you all.

Have a great week and brilliant health.

Love Smokey xXx

Get posting

2007-03-26T07:42:00.000-07:00

Hi everyone
It hasn't gone unnoticed by me and smokey smokey that we only have 1 regular commenter... the delightful funky Mango. Please join in, we have found this whole experience quite daunting and would love to get some more feedback from everyone, especially other young women with MS.... And young men!!! (we would all LOVE young men) . We're writing this blog WITH you, not FOR you.. come on, its a chance to make some friends
love ya's xxxxxxxxxx