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Lately I've been thinking about how lucky I am. As I've mentioned before, my last relapse was my worst yet, and the treatment I'...


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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

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