The random rants and meaningful musings of seven digital divas (who happen to have MS)

Saturday, December 29, 2007

Merry xmas, bog off!

Candy Cane
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??

Sunday, December 23, 2007

Christmas wishes

Naughty But Nice
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).

Friday, December 21, 2007

Quick update

Brooke_07
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

Tuesday, December 18, 2007

Me & me big gob

Candy Cane
PSST...

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

Sunday, December 16, 2007

Happy Christmas

Wednesday Addams
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!

Monday, November 26, 2007

So tired!

Candy Cane
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??

Saturday, November 24, 2007

Christmas!!!!!

Naughty But Nice
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.

Thursday, November 15, 2007

Alive again (ish)

Wednesday Addams
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*

Thursday, November 8, 2007

You live where?

Shop-till-you-drop
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?"

Thursday, November 1, 2007

Back in time

Shop Til You Drop
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!!

Wednesday, October 31, 2007

Ah, there you are!

Candy Cane
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

Saturday, October 27, 2007

Here I am at last!!!

Naughty But Nice
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).

Friday, October 26, 2007

Understanding

Brooke_07
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!

Shop-Til-You-Drop
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!

Saturday, October 20, 2007

Quiet, I agree.

See See Rider
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. .

Friday, October 19, 2007

Update

Smokey
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.

Tuesday, October 16, 2007

Anybody there?

Candy Cane
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

Thursday, September 27, 2007

Tuesday, September 25, 2007

Fairy tale

Smokey.jpg
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.

Sunday, September 23, 2007

Prince


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)

Friday, September 14, 2007

I have a job

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

Now me going back to bed

Monday, September 10, 2007

Spot the wedding

See See Rider 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

Brooke_07I 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

Wednesday Addams 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? ;-)

Friday, September 7, 2007

Never joke

Smokey 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)

Thursday, September 6, 2007

Understanding MS

SmokeyI 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

Candy Cane 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

Wednesday, August 29, 2007

Alan Rickman fans

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

Monday, August 20, 2007

These legs...

See See Rider
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!

Sunday, August 19, 2007

More stupid carers

Shop til you drop
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

Smokey
... 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

Wednesday Addams
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*

Friday, August 17, 2007

Zzzzzz

Wednesday Addams
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)

Wednesday, August 15, 2007

SCA Faire

Smokey
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

Saturday, August 11, 2007

Jobs

Smokey
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

Wednesday, August 8, 2007

Got hot

Naughty But Nice
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.

Monday, August 6, 2007

Agencies

Shop-Till-You-Drop
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!

Wednesday, August 1, 2007

Hospital visit

Wednesday Addams
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

Tuesday, July 31, 2007

To jab or not to jab?

Wednesday Addams
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...

Saturday, July 28, 2007

Result... ish

Candy Cane
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?

Monday, July 23, 2007

HP

Smokey
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.

Saturday, July 21, 2007

I'm still here

Naughty But Nice
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

Wednesday Addams
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!

Thursday, July 19, 2007

Fridge

Shop-Till-You-Drop
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.

Wednesday, July 18, 2007

Sorry, long post...

See See Rider
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.

Tuesday, July 17, 2007

It's my birthday!

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

Monday, July 16, 2007

Hospital changes

Candy Cane
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