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Thursday, 22 August 2013

Much like a twisted sweet shop V.2

Well I thought it was time to write another blog, as I have a few things to write about. The title of the blog is in reference to the variety of symptoms in my current relapse, a mix of everything from the MS Hug (not a hug, a vice-crushing grip on my rip cage, rib cage muscles in spasm, painful, and sore to the touch even afterwards), fatigue, speech problems, balance, memory, numb leg, fiery pins & needles, my collarbone feeling like it's on fire. This is V.2 as I did originally write a blog with this title, but forgot to post it, then posted it, and deleted it as it wasn't relevant anymore at that time. I've been signed off for Two weeks to rest and recover, so fingers crossed this relapse has been nipped in the bud.

Last year I was more prolific with my blog writing, this year not so much. I'm not one to be superstitious, but if I was, I'd be blaming 2013 as 13 is meant to be an unlucky number, and what a crap year it's been for me (I know it could be much worse, but at the same time I don't want to take any comfort in that, as if it's worse for someone else, it's like I'm taking comfort out of their misfortune). As ever, even though life is being an unfair bitch to me, I'm trying to be positive and make good things happen, despite now currently going through another relapse.

This year has been crap as my MS has gotten steadily worse, but is still classed as Highly Active Relapsing-Remitting, which is obviously much better than Secondary Progressive, but not great.

So this year has seen me move out of the house-share, and I was living between my Grandparents (in Littlehampton), and my Parents house (in Brighton), but now I'm living full-time at my Mum's - now there's space for me and my many belongings as my Parents have split up. I'm now officially down to work a four day working week rather than 5, but I've hardly been able to manage that, as aside from the extreme fatigue (which as I'll always reiterate is NOTHING like normal tiredness), my medication has been misbehaving even more than usual. For something which is meant to help me, the Rebif really hasn't - each night I take it I get a racing heartbeat which makes it near impossible to sleep, and when I actually manage to, it's a light sleep with nightmares. Then the next day is guaranteed flu, and of course all of this means that I'm having to take even more days off sick, when I'd just like to be getting on with my life.

I've spoken to my MS nurse in regard to the latter and have asked for a reduction in my dosage from 44mg to 22mg, which I think will make a difference, but in light of my current relapse, they're reluctant to in case it's making some kind of a difference. My opinion is, why take a drug which actually makes my quality of life worse? All I want to do is try and get on with my life in as normal way as I can. With any luck after she's spoken to my Neurologist (who is on long-term sick, and the NHS have only just got their arse into gear and hired someone else to help), then they'll lower it. Thankfully as I'm planning to come off the Rebif soon (for the Gilenya - pill medication for MS, which is much more effective than my current medication), then they may reduce it.

I've decided to take things into my own hands, and have signed up for a medical trial for Stem Cell Therapy. A friend of mine sent me a link to the trial on the NHS website, so all I did was email the Doctor in charge of the trial, and I have an appointment to be assessed in early September. If they decide that I meet the criteria for the trial, then I could be starting the trial as early as late September to early October. The trial lasts for a year, and you're guaranteed to get the stem cell therapy in the trial. You either get the treatment in the first six months of the trial, then the placebo in the last six months of the trial or vice versa. This all depends if the cells that they harvest from my hip bone actually grow (I think this can take 8-10 weeks).

This trial is looking at administering by an infusion, much like the way they use to administer Chemo rather than in the style of an epidural, like they have been doing. I haven't mentioned anything to my MS nurse yet, as I haven't actually been properly assessed and nothing has been confirmed. If I don't get on the trial, then I should be on the Gilenya by the end of the year. Either way, I hope that this time next year things may be very different!

I've joked with friends that if I get much better due to the trial, as I've missed out on a lot in my Twenties, I'll be acting like a Twenty something in my Thirties, but I guess it's better than acting like an overgrown teenager.

I've got used to how I have to live now, even using my walking stick most of the time (when I have good days I try not to use it so I don't always rely on it, which doesn't always work out, so I have a fold up one to keep in my bag!) I know I can't socialise like I used to, which was probably most of the week, as well as working, and being in a band, just taking each day as it comes is how I live now. I do cancel on people a lot, but those I make plans with seem to understand, and still make plans with me again. I do have moments where I feel like I'm missing out, especially on Facebook with everyone getting in relationships, getting engaged, getting married, going travelling, or just going out on a Friday night, but I'm not bitter, I've had plenty of fun, and there is plenty more to be had (just with more rest in between!)

My blogs will probably get less and less as I'm starting the first Sixty credits of my degree in October, but I'll try and fit in a few more this year.

Ciao for now.

Jo xx