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!

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!!!

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

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

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

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

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

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

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

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

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

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

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!

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

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

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

PSST...

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

Happy Christmas

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!

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!!!!!

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.