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I only wrote one blog last year, pitiful really for someone who considers themselves a writer, but then again, I either haven't been wel...

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Tuesday, 10 September 2013

Knock me down, I'll get back up, there's no other option!

Well, as I have more to write about, here's another blog!

I'm finally over my relapse, but I now have the fatigue to get through, and an eye infection PLUS a cold had also been added to the mix, so more fatigue - oh lucky me eh! Ah well, it could be worse, plenty of rest and hopefully this should sod off. Although now it's September, it means that it's officially Cold & Flu season, so I bet there's many more lovely viruses for me to host over the coming months. Which reminded me to call my Doctors to enquire about my yearly Flu jab (it's usually me and the local elderly people getting their jabs), and the receptionist was pretty clueless. She said: "Erm, ah, well, I think we're doing that at the end of October, so call back then." I said to her that was pretty late, as I usually book it in September, and have it later that month or early the following month, as of course, with me having MS & mild Asthma, the earlier I have the jab, the better chance I have of not getting the Flu. She replied: "Erm...just call back nearer the time." Great, thanks for your help.

In medication related news (the thing I must moan about more than anything else), I went for my appointment in London to be assessed for the Stem Cell trial, but they decided that I wasn't eligible, as most of my symptoms are sensory, so therefore they can't measure them. It was a long day, I left late morning to allow me time to get the trains I needed to, then the bus to Charing Cross hospital, my appointment was late, then there was a fire alarm which didn't help.

The Doctor tested my reflexes, got me to walk without my stick, used a pin prick to see if I felt pain, and even though I have much less sensitivity on my left side, and have trouble walking (due to balance problems and an annoying numb patch on my left leg), they gave me a score of 2 (whatever measuring scale that is on I don't know), and you need at least 3 - 6.5 to be eligible. By the sounds of it, they want people who are pretty much verging on Secondary Progressive, or if you have dodgy bowels and/or bladder - which thankfully I don't.

Needless to say, I was pretty upset afterwards, as I thought I was pretty much on the trial but this was a formality. I decided to get pissed that evening to drown my sorrows, so I met up with a friend, had two pints, before going to a gig in Burgess Hill, where I had a further five pints. The funny thing was I kept dropping my stick, then insisting on trying to pick it up myself, and managed to - the alcohol masked the numbness in my leg, so seemed to help. I'm sure I spoke lots of rubbish, but I had a good night and let off some steam, which was very much needed.

I've come to terms with it now, and need to focus on getting the Gilenya pill medication, and keeping fit. It's amazing the contrast of my fitness to what is was 2 years ago, and 1 year ago, as I went to an introductory Physio Pilates consultation yesterday evening, and I felt sore afterwards, and in comparison to what I used to do at the gym, was nothing! Then again, four relapses (especially one lasting 4 months), can do that to you, I think my body is a bit ravaged.

My aim for the next six months is to be on new medication, loose the walking stick, be fit & healthy, keep my mind sharp (I'm starting the first part of my part-time degree next month), and try and be the best that I can. I can't be as well as I used to be, so getting well and recuperating from what my immune system has thrown at me is the next step, and if we can get Stem-Cell therapy in the next five years, hopefully I'll have a good chance at recovering. Then, I'll be an annoying thirty-something acting like someone in their twenties, I will have time to make up you see!

Well, until next time. Hopefully next time I can blog about how I'm off Rebif, and on Gilenya, however I've been waiting so long, it might be nearer Christmas...let's hope it's nearer.

Jo x

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

Wednesday, 19 June 2013

Forgotten in the NHS & moving on...

Don't get me wrong, I'm glad we have the NHS - we're a lucky country. I know a few people who work for them, who work hard and get huge job satisfaction from helping people on a daily basis. However, I've come to this conclusion: if you need emergency care, the NHS is great, but if you need continuing care, then you'll be lost in the system.

I've mentioned before in an earlier blog about my frustration with being diagnosed and getting my medication, well it hasn't stopped now, it is in fact, getting worse.

The services for people with MS in my area are pretty stretched, especially with my Neurologist being on long term sick, my MS nurses have been dealing with things. The MS nurses, my Neurologist, and Neuro-Physio Therapist are excellent, but the NHS & Primary Care Trust are not!

The service is so stretched, that I only have an annual appointment with my Neurologist as it is, this was meant to be in March, and was subsequently cancelled without informing me. So everyone in Brighton & Hove with MS, is left without a Neurologist, unless it's an emergency appointment - as the NHS have so very kindly provided someone for one day per week.

I need a referral from a Neurologist to be assessed for the medication I need, something which may actually work, but it seems to be generally accepted that the progress will be slow, as my Neurologist is the one trying hard to get people on the medication. Why can't we see a Neurologist which doesn't specialise in MS? Make them learn something maybe?

Yes I'm fed up, and it feels like I'll be stuck on medication which doesn't work, questioned when I need to get benefits due to me now working part time, and if I don't get the help I need, I will get worse and could be in a wheelchair by the time I'm in my 30's. I'm now using a walking stick some days, which I try not to rely on, however some days I have to use it.

Despite all of this, I have to keep thinking that it could be much worse, and you either get on with it, or drown in self-pity, so I choose the former. Getting on with it is made much harder by probably being depressed (my medication, Rebif, can help contribute towards this), and I've felt miserable since starting the medication - I just haven't realised how much so until recently. If it wasn't for the Rebif rep from Merck Serono checking my self-injector for statistics every six months, I would just stop taking it - but if I even miss one dose they'll tell me off (obviously forgetting that I have MS, and therefore I do genuinely forget every once in a while).

As I'm trying hard not to drown in self-pity, I'm trying to set myself goals. Goal number one, is to try and get fit again. It's always hard rehabilitating after a relapse, so it'll take me a while, and unlike fit and healthy people, who can spend an hour in the gym, then go to a spin class (which looks horrendous), I currently get tired out after five minutes of my neuro-physio exercises! So my next step, is ten minutes, building up to thirty minutes, then on to Pilates classes again, so hopefully building up my strength slowly.

Goal number two is to study for my degree, which I've started on already, so by the time I'm 32/33 I should have finished it.

Goal number three is to have more fun - I've found it much harder to get out and socialise over the past few years, having to cancel things often at short notice (as mentioned in my other blogs). After looking on the MS society website, I realised that I'm still grieving the loss of my old life, and the things I could do, so I need to focus on the things that I can do. Granted I need more rest than others, but I need to find a way of coping so I can live, rather than just purely survive. I have The Peacocks gig to look forward to in Brighton in August, but if you know of any other good local gigs, message me (I have a 'Contact me' widget on this blog, or message me on G+ or Facespace). Next on the horizon: join a band, aim to go out at least once a week - health permitting of course!

I'll make reference to my earlier blog of dealing with the five stages of grief (in my own warped order), but now looking at the five stages of grief again, I'm now touching on acceptance. One thing I won't accept though is that future generations diagnosed with MS will have to accept the disease, hopefully one day, it will be cured (here's me hoping that that 'one day' will be soon!)

One more thing, please sign the petition to say 'No!' to the MS lottery, I will be eternally grateful! Say NO to the MS lottery

Anyway, ciao for now.

Jo xx

P.S: Sorry for the ads under the first or second post - I haven't figured how to get rid of them!

Links for this blog:

MS Society - The Grief Process

Say NO to the MS lottery

Saturday, 27 April 2013

Blah...

I guess my blogs are getting less and less lately, but I might have mentioned before that I don't want to repeat myself too much. This time I have something to write about - it might sound self pitying, however I'm telling it as it is, and how I feel. (I am well aware of someone else on this planet having worse problems with me, and even with those people, someone else will be worse off. If you have a problem, you're entitled to be pissed off...)

I had a relapse from December - April, and now I have a bad bout of MS fatigue, which actually makes me prefer the relapse, and I've never known tiredness like it. In fact, I find it scary how much I can sleep and I still feel tired.

This time it was worsening of old symptoms more than anything, like cluster headaches, memory, balance and speech problems, and hand spasms. I've taken a large amount of time off work, and have been signed off for the past two weeks. My Physiotherapist gave me a walking stick (one for each side, depending on which side I need it), this is to help with my balance problems, and I'm now going to be working 4 days a week. I know I need to work part-time, however I feel like me working hard the past two years and going one step forward, I'm now going five steps backwards.

I'm going to be Twenty Six on Monday, and I feel like I'm Eighty Six. I want to be going out with my friends, having fun, being carefree, however I've had to refuse many social invitations this year because I'm unwell, which at first made me feel like a flake, but my friends understand so it stops me from worrying (although if anyone stopped being my friend because of my MS, then what would be point of being friends?)

Anyway, enough of moaning from me, things could be worse, but it's making me re-evaluate my life and what I want to do - life is too short. Number one on the list, trying to get more writing work, so I could eventually write for a living one day. I'm starting to feel ever so slightly better than I was two weeks ago, so I need to remember that if I keep on resting (more than usual), the fatigue may be back to normal soon (still exhausting me, but meaning I can have a nap to quench it, rather than sleeping for 13 hours).

Until next time...

Jo

Thursday, 7 February 2013

The final cut...maybe

My indecisiveness has made my blog pretty quiet for the past four months. I did put two posts on, one of which I realised I hadn't published by mistake, but as they were in the wrong order, I deleted them, and didn't bother putting them in the right order. Oh well.

Plus, even though I have an unfortunate theme for my blog, and I've made it a "Dear Diary..." regarding my MS, and it'd be odd to suddenly start writing about my dinner, and chores around the house (why would I, unless I really did want to bore whomever decides to read this), I did get a bit bored of writing about MS. I figured I was maybe getting a bit repetitive.

So maybe a slight hiatus is a good thing.

I still am experiencing a relapse, which my MS nurse tried to comfort me by saying: "It's mainly sensory though, so not too much to worry about", oh, okay then, that's good...oh these fiery pins and needles shooting up and down both legs, and on my face, is just lovely! Not to mention my goldfish memory, jumbling of speech, dizziness, fatigue, hand spasms, occasional weird eye pain/swelling, and indescribable headaches.

I'm sure she didn't mean to trivialise my symptoms, and she probably meant at least I'm still able to walk (which of course I'm happy for, although sometimes I'm so dizzy I can't actually get up and walk), but it did irk me slightly, never mind though eh.

Despite this, I've decided to start an Open Uni course, hopefully going towards a degree, and thankfully it has a big time-frame in which to complete a degree (anything from three to sixteen years, although I'm aiming to do it part-time over 6-7 years).

I'll be out of the house-share in a few weeks, which I was blogging about so keenly last year, it's crazy how quickly the year has passed. Staying with family, saving up, hopefully getting a flat to myself in June/July time.

Anyway, this is a bit of a nothing post, just so I can say I have my first blog post for 2013. Once I can think of something else, I'll write another.

Jo