Friday, 31 January 2014

Week 73

Last week I moaned a bit about the return of the invisible monster that is fatigue. I ended the blog with questions about why it is back. 

I've had a couple of good days and a couple of bad days since I last wrote. The bad days culminated in falls. That's 6 now in January, one every five days on average.  Not great, a bit more than the previous few months, but my falls have been more frequent in the past, so I'm not complaining. Okay I am, but I'm not, if you get me. It does seem like the falls are more common of late though. 

It could be fatigue that is related to the falls. That would make sense, I suppose. Fatigue in MS is physical as well as mental. My muscles are weaker when I'm fatigued. The falls aren't balance related. It's a case of me not having the strength in my legs to keep me standing. I don't fall when walking (well, sometimes I do), my problem at the moment is transferring. I seem to struggle a bit getting out of my mobility scooter and getting onto the bed/chair/toilet, or getting back on my scooter from one of the above. 

I've even questioned the Gilenya and wondered whether it wasn't working anymore, or if my body had built up immunity to it. Hang on, isn't that the same thing? Anyway, this is a tricky one to answer, but I'm going to give it a go: My body has been in decline for a few years now. All the different medications I've tried haven't stopped progression. Some ofdrugs have given me symptom relief, but it hasn't done much for the actual illness. Maybe they have and I would be so much worse if I hadn't taken the disease modifying drug route. There's one way to find that one out, but no, I'm not going to stop it. 

If my fatigue is a sign of Gilenya losing its effect, you would assume that the other improvements I've noticed would also be on the wane. Well, there's a good bit of news. I still have the best control of my bladder and bowels that I've had since diagnosis. 

This is the reason why I am not entertaining the idea that the Gilenya has stopped working. I've left a message with my MS nurse to see if there's any advice she can offer me any advice on my new companion fatigue. Vitamin B12 maybe?

Have a good weekend,


Friday, 24 January 2014

Week 72

didn't do a blog last week because I didn't feel like I had anything new to say about Gilenya and as my blogs of late seem to me to be getting pretty repetitive anyway, I decided not to put you through the misery of reading the same recycled rubbish again. 

Over this last week though, hindsight smacked me right between the eyes as it struck me (pun intended) that there is something I should have been sharing. 

One of the improvements I observed after starting Gilenya was a massive improvement in my fatigue. It was after 3-4 months on the treatment that it happened. It's stayed this way too - with the odd fatigued day or two, here and there. If I had a busy day (by my standards), I would get the fatigue of old, but a lay down on the bed for half an hour or so was often all it took for the 'head mist" and muscle tiredness to subside. 

I have already mentioned that fatigue seems to be creeping back on slightly more and more frequent occasions. Well, I feel like I've had it practically every day for the last two weeks. Not the best start to the new year, eh? I fall asleep after lunch practically every day. Before Gilenya, I used to go and sleep on the bed for a couple of hours after lunch every day and even then I'd still feel pretty crap the rest of the afternoon, until finally coming round in the evening. It would often feel like I've wasted the day. 

Getting out of bed in the morning is becoming increasingly difficult. I have to set my alarm for nine o'clock and I'm hitting snooze for an hour. Today (Wednesday), I didn't get out of bed till midday!

When I look back, I could say it's been on the up since Christmas. Christmas is traditionally a busy time of year, as any parent to two young children will agree. Christmas is the time of year were we all eat too much and drink too much too. Come on, admit it, you're nodding in agreement, aren't you. Obviously I've got no right to categorise everybody this way by saying 'we all'  but I bet there's quite a few nodders out there. 

So this blog finishes with questions, not answers, I'm afraid. Is my fatigue on its way back? Does this mean the Gilenya is losing its effectiveness? Has my body built up neutralising antibodies towards Gilenya? Or is it some kind of MS 'hangover' from the  food and alcohol indulgences over the Christmas period? Who knows? 

My life is a bit stressful at present, and I know that isn't helping. 

I apologise about such a melancholic diary entry, but this blog isn't just about the good things about Gilenya. It is about a bloke who takes the drug and how he feels, good and bad. 

Have fun this weekend,


Friday, 10 January 2014

Week 70

took over the Shift MS Twitter account last weekend. It was a very enjoyable experience; it was good fun and I met some MSers that I can have a laugh with. When I say 'met', you know what I mean. I have been asked if I would like to do it again in a few months. Of course I said yes. 

The Gilenya is ticking over okay. There really isn't any change from last week, so this blog is going to be a lot shorter than it usually is. I like to keep them short and sweet because, firstly, there isn't much change in what the benefits or problems (none) I get from the treatment on a week by week basis; I feel like they are pretty repetitive as it is - read one of my blogs and you've read them all! Secondly, I believe that if a blog goes on too much, the reader will lose interest. Let's be honest here, I doubt anyone is still reading this by this point. If I was reading this, I'm quite sure I would've given it the sack by now. 

I do read quite a few other blogs. Mainly ones by people with MS. I find it interesting what other people say and think, but I do have a low concentration span, so I've a habit of skimming through them after the first couple of pages. It's not my fault, I've got MS!

All jokes aside, I never had this problem before I had this illness. I used to work in London, and it's an hour's train ride away from the Costa del Southend, so when I wasn't sleeping, I was reading. I'd get through a book in a week, if not more if I had one I couldn't put down. 

The book I'm reading at the moment, I've been reading for 3 or 4 months now. Seriously. I just cannot pick it up. It would be a really good book too. It isn't anything to do with the author, or the story either. It was the same with the last 2 books I read too. It must be a year since I read an entire book. Ha, listen to me, I make it sound like I'm trying to move mountains, or something. 

I resolved to stop falling over and to stop swearing on New Year's Eve. I've done both twice in the  9 days since I declared my abstinence. I'm relatively content with these stats. I've got an excuse for the profanities. Actually I haven't, I've got a reason though. My football team has conceded 11 goals in a two game period that has seen us knocked out of two cup competitions. Bollocks! That doesn't count because I didn't say it out loud. 

The falls can't be helped, but I can make sure to listen to my body more. Both falls could've been avoided in all honesty. I feel my legs weak, I'm low on energy, so I tell myself 'I'll just finish doing (insert the chore of your choice here) and I'll sit down'. This is when I just slump to the floor and that's when the aggravation starts. Now I've stopped that and when my legs tell me to stop, I don't tell them "In a minute", I stop. 

Happy Friday, people. 


Friday, 3 January 2014

Week 69

Happy new year to one and all. I hope you saw in the dawn of the year in in the way that you wanted. 

I did, I spent the evening with wifey, the children and a large bottle of Vodka. Yes, I did drink far too much. No I didn't fall over. Not once. That itself is a good start to 2014, let's see how long I can keep it up. To be honest, I'll have probably fallen over by the time I publish this on Friday. I've got a whole 2 days to swerve the carpet till then. 

After my diary last week, I had a few tweets asking me about why a diagnosis of secondary progressive MS (SPMS) can affect an MSers eligibility for Gilenya? I probably didn't explain it properly, but in the UK, Gilenya is used as a second line treatment for people with relapsing remitting MS (RRMS). 

Gilenya's primary function is to reduce the amount and severity of relapses. In doing this, it is hoped that this will delay the transition to SPMS. When you officially get diagnosed with SPMS it is because you have stopped relapsing and your body is in decline. Your disability is slowly progressing. 

The scientists are pretty much in agreement that Gilenya doesn't help with the actual progression itself. Therefore it is pointless giving a treatment that at £41 per tablet, and approximately £15,000 per year to somebody who has stopped having relapses. It sounds harsh, but I can understand the decision. 

I have been given the Shift MS Twitter account to use and abuse for the weekend. Think I'll use it to 'shamelessly' advertise my blog...


Have a good one,