Since the Tysabri infusion, I've been so tired. I've had fatigue on and off before with the MS, but never for such a prolonged period as this. The last relapse I had, in January, it was the fatigue that was the unmanageable aspect and the deciding factor in starting steroids. Back then, I couldn't be awake for more than a few hours, and when I was awake my eye lids were drooping, I couldn't hold my head up, I was just going through what felt like obligatory motions of being awake, waiting until I could get back in to bed.
This fatigue isn't as severe as that, but it is relentless. Since the infusion I have gone up North for a long weekend, went in to town briefly for shopping, then the next Thursday I went out for the evening. The following Saturday I had an evening out at the pub. I had a roast dinner at a friends house over Easter. I met a friend for coffee. Went in to town shopping for one hour. I had a lovely day out punting followed by beers for a friends birthday. Went to Sainsburys once. And a day out in the pub this Tuesday.
It may sound like a lot all written down like that, but that is IT for a month. Don't get me wrong, I am really happy I have still been able to do those things and to enjoy them. But if you read the above and instead of looking at what I've done over the last month (well, just over 3weeks) imagine all the gaps in between.
It really is hard to describe fatigue to people, because tiredness is something we all feel a lot of the time, people assume that the fatigue is a symptom they can relate to
I am fed up of people trying to attribute 'normal' reasons for the tiredness. "Oh well you've probably had too much sleep/not enough sleep/done too much/not done enough/drunk too much/not drunk enough/eaten the wrong things/watched too much TV/not enough fresh air/too much fresh air"
NO. It is not THAT kind of tiredness. Believe it or not, there was a time when I didn't have MS. I do remember what it is like to feel tired for all of those reasons. I do remember going to work after little or no sleep. But there is the crux, I still went to work. Yes it was hard, I am sure I was not as good a worker on no sleep, but I could still do it. Now, if I don't get at least 9 hours I have little hope of leaving the house even to put the rubbish out.
I remember what it is like to lay awake unable to sleep, watching the clock, worrying about the day ahead and how much worse that day would be on such little sleep. I still have that (although it is rare to be awake watching the clock at the moment) - I still worry about the day ahead and managing it on little sleep. However now, my definition of little sleep is wildly different, and the ramifications of having 'little sleep' are much greater.
Think of how you feel when you have had just a few hours sleep for several nights in a row, been working during the day, gone out in the evenings too. Think of that moment when you finally get some time to yourself and you are laying on the sofa just so tired, trying to focus on a conversation or some tv programme but your eyelids just keep drooping. Now imagine feeling like that ALL the time. That is the closest I can get to describing it in a way that it relates to 'regular tiredness' but even that doesn't fully explain it.
It is different to that kind of tiredness in that it sinks in to every single part of you, and the hardest thing mentally is there is no relief from it.
I get up, I don't feel refreshed. I sleep for 8 hours solidly, I feel like I've had about 4 hours. I sleep for 9 hours solidly, I feel like I've had 4 hours. I sleep for 12 hours solidly and feel like I've had about 4hours. Saying it feels like I've had 4 hours isn't even doing it justice, as it is not comparable to any tiredness I have felt before -pre MS. It permeates every fibre of me. Every bone feels like it's made of foam, every muscle and tendon of jelly and my brain a sloppy mess of both. Trying to form a thought is like wading through mud, trying to move is a huge effort.
Of course I can still do things, as I've shown above, I have done things. But I've been so tired when doing them, and had to save up a lot of energy in the preceding days and spend another couple of days after renewing it again. I've had to cancel a few things, because I've had to really prioritise my time. If I am going out one evening, I have to clear my diary for the next two or so days, so when I do go out, it isn't going to be something that I don't really want to do. I can't accept any invitations out of politeness, it just isn't possible.
I have no inclination to do anything for myself. I get up in the morning, (no that isn't true, I get up early afternoon) I have a cup of coffee, beating myself up for once again not making it out of bed before midday. Maybe do the dishes or some other menial household chore and that is it, I'm knackered. I then laze on the sofa for a couple of hours before moving on to the next menial chore.
Before the infusion, I still wasn't doing much because I wasn't working, but I was trying to go out the house most days, spreading out things - buying bread one day, milk the next. Now, I text the boyfriend and he gets the bread and milk. I could go to the shop and buy the items, but then have no energy to do anything with them. Before the infusion I could also be spontaneous to a certain degree and if I was having a good day, I could go out for a drink on a whim.
My evenings are now pretty much spent waiting for bed. But I delay it, because I hate the bed now. Until now, I always loved my bed. I loved getting in to it and snuggling in to the covers, inhaling the smell of the pillows. Now all those things I have come to despise. The bed symbolises the prison that is this relentless tiredness.
It is making me angry, frustrated and bored. I am mad with myself for not having any 'get up and go', for never achieving anything. I feel like I am wasting my life. What kind of life is this, if this carries on? I won't be able to do the Access course, I won't be able to work. I'd rather take my chances with the MS thanks.
I am sure it is from the Tysabri because it has been here ever since that first day. It has lifted a small bit this week - enough at least to collect my thoughts enough to write this - just as I am due for the next infusion (in 5days). If it doesn't lift, I won't want to carry on with it and that thought in itself scares the bejezus out of me. I have however read of others who have had a similar experience and it has improved after a few months, so I am really hoping that is going to be the case for me too.
This isn't just any tiredness, this is MS tiredness. And it SUCKS.
It sucks big time. Hard to describe to others. Even to myself. But it's all too real.
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