Friday, 28 December 2012

Week 16

Well I thought it was about time I put er pen to, er paper and er, wrote to you lot. I can say that in a plural sense as my blog has had over 2,500 page views. So there are more than one of you reading this drivel. Unless, of course, it is just the one reader out there and you are reading it over and over again to make me feel good! Thanks, but to save yourself from getting square eyes, just hit the 'refresh' button, I'm sure that will work, and you won't have to read my inane waffle over and over.

I wonder if I can get myself up to a million page views by next week doing that?

Right, back to business. I don't even think about the possibility having a side effect or anything because I have had none. Nothing. I've been on the drug for nearly 4 months and I can honestly say that there hasn't been anything adverse going on with my body and I'm sure that nothing will. If something was going to happen, it would've done so by now.

You're thinking I'm a bit cocky, right? Well, you're right and wrong. Making bold statements is about as close to 'Living on the edge' as my body will allow. I always was a trappy so and so before I got ill and MS hasn't changed that.

Well that's it then, end of blog? Oh no, I plan to continue intruding in your lives with news of improvements with my bowels, my bladder and the fatigue that is practically non-existent.

Wishing everyone a very merry new year.


Friday, 21 December 2012

Week 15

My Gilenya turned up on Monday. It was delivered bang on time by Dave W again just like the text said he would. Thanks, Dave W, I could set the clocks by you! *makes mental note to ask Dave W what the W is short for* Will he tell me? I don't know, his surname is none of my business, so we'll just have to wait and see. Although Don't lose sleep with excitement over this potential revelation as I will probably forget by February.

They deliver two months supply at a time, and when it arrives, I still have two weeks leftover from the last delivery. This gives them 14 days grace, should there ever be a distribution issue, although I am absolutely certain that should this situation arise, the delay will have nothing to do with Dave W. Oh no.

My fatigue is at an absolute minimum, which is fantastic. I did mention it to my consultant at my recent clinic appointment. I asked if she thought it was the Gilenya, but she didn't know. So then I asked if it could be the 'Placebo affect', and again, she sat on the fence! For what it's worth, I think it is.

The placebo effect, by the way, got its name from when people on trials were given either the actual drug or a placebo without knowing what they were given. Statistics show that the people not given the drug did actually improve slightly because they believed they had been given the drug and it was working.

Positive thinking can go a long way. A bit of food for thought to end on there.

Merry Christmas, everyone.


Saturday, 15 December 2012

Week 14. - 15.12.12

I was at Southend hospital last week having my 3 month liver function test. That is basically giving blood. I don't know what they will do with it - they're obviously looking to see if something is present, (or missing) would be my guess, but what do I know? I'm not a scientist. I did ask the nurse, but her reply was as clear as mud - they were looking for any abnormalities. I guessed that much and needn't have bothered asking.

I don't know if I have already said, but when I wee, I self catheterise. I'm sure I have, but my memory is pretty crap these days. I can't blame it on my illness, because it always was quite bad, but now Ive got the perfect excuse to be lazy and not bother trying to remember things.

Where was I? Oh yeah, my waterworks. I've been performing intermittent self catheterisation for a couple of years. I do it this way every time I go. I use 6 or 7 catheters every time I go (unless I am out on the beer, and then it's 8-10!). 180 will last me just under a month, but over the last ten days, I've only been using 4 daily. I am taking in the same amounts of fluid each day - if not more in a bid to prove I can retain it better. I am passing more urine when I do go, so that means my ability to hold onto my bladder has improved. I think it's the Gilenya. What else could it be?

If the Gilenya is starting to take effect - and I firmly believe it is. Why is my ability to walk deteriorating so rapidly? I am struggling so much at the moment.

I am really looking forward to the new year. Starting off afresh. Close the chapter on this awful year I've had and get thinking positively again.


Sunday, 9 December 2012

Week 13. 10.12.12

I declared my last blog as the three month mark, but officially 12 weeks isn't 3 months. (4.3 weeks in a month and all that) So NOW is three months on Gilenya.

When I last wrote, I left with lots of questions. I am not putting my recent problems down to a relapse. You KNOW when you are having a relapse. I have gone downhill of late, but I have had a difficult time. I was recently involved in an accident where my car was written off and that could be why I considered that I could be heading towards a relapse. I've rested a lot this week and I do feel better for it, so lets keep the thoughts of a relapse at bay. In fact, lets use a bit of positive thinking and forget all about it.

My fatigue is definitely a lot better. I finished off my bottle of vitamin B12 tablets over a week ago and I haven't bothered to replace them. I really do feel more alert, more awake.

I had an appointment to see my Consultant the other day. . It was my 3 monthly Gilenya review at the Royal London Hospital, which is a bit of a pain, as it is a 100 mile round trip from (the Costa Del) Southend. I've always considered it to be a worthwhile journey though, as you're in good hands with the Barts lot.

I saw a different consultant, and it turns out she is based in Southend. She is the new consultant there. Small world, eh? This is because Barts and Southend hospital are working closely together at the moment and there is now a Tysabri clinic set up there and they've even just started a few people on Gilenya. This means I can now have my clinic appointments locally whilst remaining under Barts and the London Trust, so all good news there


Wednesday, 5 December 2012

Week 12

I've hit the 3 month mark. 12 weeks of Gilenya and I am definitely noticing some changes.

You may have observed that I call it Gilenya now and not Fingolimod anymore. Then again, you more than likely haven't. It says Gilenya on the box, so Gilenya it is. Fingolimod was the name of the drug when it was in trial form. Anyway, who cares, right?

I am still experiencing better bladder control and my bowels are nice and regular too. I am just hoping my balance improves. And my legs too, they're my Achilles heel these days. Ha! It's almost ironic. But seriously, my legs have really gone downhill since the summer.

I would even say that the weakness in my legs and my balance is so bad that the thought of me being in a relapse has crossed my mind over the last few days. I am falling over on a daily basis and although I haven't had any nasty falls, a few have been 'lucky'.

This blog is supposed to be about noticed changes, and here I am banging on about symptoms that have got worse!

I can only end this entry with questions - Am I having a relapse? Does that mean the Gilenya isn't working for me? Can some symptoms get better, whilst some are getting worse? answers on a postcard please?

Lets hope I can tell you the answers next time I write. (Check me and my cliffhanger out!)