Result... ish

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

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

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

HP

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

Got tons to do so will write later.

I'm still here

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

Harry Potter and the Deathly Hallows

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

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

Fridge

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

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


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

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

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

Sorry, long post...

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

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

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

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

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

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

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

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

It's my birthday!

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

Hospital changes

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

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

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

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

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

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

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

see you later alligators xx

Let's party!

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

IT'S MY BIRTHDAY TOMORROW!

Jumpin' July!

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

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

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

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

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

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

This is exactly what I need.

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

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

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

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

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

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

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

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

Countdown

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

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

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

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

Care companies

I hate care companies.

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

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

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

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

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

A bit crowded!

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

Speak soon!

Another new kid!

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

Joining Candy Cane

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

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

Thank You.