Sunday, 22 June 2014

Fatigue and struggling with the heat :-(

One of the MS symptoms that I struggle with the most is fatigue and I seem to struggle very badly when the temperature rises. Of my other symptoms pain is another one that is a big problem but I struggle with pain in both extremes, when it is very hot and when it is very cold. 
We have been lucky enough to have been given a grant from the MS Society which enabled us to purchase an air conditioner and I dread to think how I would manage without it now......we also have an air cooler in our bedroom and that is essential to have on overnight. 
Now don't get me wrong, I love the good long as I'm in an air conditioned room or car! ;-) 
Martin and I enjoy watching television drama and comedy series as well as all sorts of films but we are getting behind with a lot of them because I can't stay awake long enough to watch any of them. We also enjoy going to the cinema, in fact we have a membership to our local Picturehouse. The problem with going to the cinema is that it is dark and comfortable so I struggle to stay awake in that environment too......generally the only way I can stay watching a film is if I have something nice to nibble on but that doesn't help my waistline!!! ;-)  

Martin and I have worked out a plan that seems to be working, I have to have an afternoon nap. I say a nap but I'm normally asleep for about two hours! 
If I sleep for an hour and a half or so in the afternoon from about 3pm then I seem to be able to stay awake in the evening for a bit longer. If I don't have a nap then I nearly always need to go to bed between about 6 and 7pm. 
I have tried using medication, in fact I do use Modafinil but I don't use it regularly because your body gets used to it and it becomes ineffective. I do have it for when we go away on holidays or if we are doing something that I really need to be awake for. I always remember my GP telling me that Modafinil is a really expensive drug so I always keep that in mind too. I'll never forget her telling me once that I am her most expensive patient, I wasn't sure whether I should be proud of that or not.......but I am!!! ;-) 

Having fatigue is incredibly frustrating. I didn't really realise what fatigue was properly until I was diagnosed with MS and understood how it makes you feel. I guess, like most people, I thought it meant that you were just a bit more tired than usual, but it's much more than that. 
It is a feeling of complete exhaustion and one that you cannot fight. 
For me, I literally cannot keep my eyes open and I don't always realise that it's happening. Say Martin and I are watching something, he will say to me that my eyes are going and I'm convinced I'm fine. Then in about five minutes I can be fast asleep! 
When I think back to before I was diagnosed, I remember times when I really struggled with staying awake, but I was always busy with work and I was always rehearsing for some show or another so I just put it down to being busy etc. But knowing how fatigue makes me feel now, I'm not sure that I didn't start experiencing it in the years before. 

I have recently realised that I am spending a lot of my life sleeping or resting and I find that really sad. I've never thought of having MS like that before but now that I have, it is quite upsetting :-( 
It's about making choices and planning though. If I plan to have a "nap" and I make that choice, it means that Martin and I are able to continue doing something we enjoy rather than fighting the feelings of fatigue, trying to push through it and then having to go to bed really early anyway because I can't stay awake!
It's annoying......but it works! ;-)

Enjoy the good weather but don't let it get the better of you and stay well! :-)

1 comment:

  1. For some reason temperatures have been a factor in MS. Does vitamin D help people with MS? We started this survey to help find out.