I am so tired, right now I feel as though I could sleep for a week without getting up for even a visit to the loo. It has been sneaking up on me for the last couple of weeks, I could feel it but quite simply know there is no way of doing anything about it, those who don’t have something like either Fibro or MS don’t understand fatigue at all. I would be a millionaire if I had a pound for everyone who has said to me, “well have an early night”, or “just have a nap this afternoon and you’ll be fine to go out tonight”, fatigue doesn’t work that way. Fatigue is a tiredness that grips every cell of you and then takes your soul as well, the amount you sleep or the quality of it, quite simply doesn’t make the slightest difference and it drags you down and down until it is ready to let go. There is this maddening circle that you get caught up in, all you want, is sleep, to crawl into your bed pull the covers up as far as they will go and to block not just the world but your mind and body as well, but sleep changes nothing! Whether it is the alarm, your body or something else that wakes you, you wake not feeling the slightest bit better, you kid yourself you are and you start your day in the hope that you just need to wake up, but you are as awake as you will be at any point in the whole day. Within an incredibly short space of time, you start to feel just as you did the day before when you sloped your way into the bedroom and collapsed into bed, you are living deep in a mud wallow and there is no chance of ever escaping it.
I’ve lived with it for so long now that sometimes it feels as though it has been there since I was born, but I know that is rubbish. In my twenties, when my MS started, I would feel like this when I had a flare, but there was one other time that it appeared and that was when I found myself fighting depression. I had it bad, really bad, so much so that they convinced me to spend a few weeks in hospital, I had two small children and there was no way I was going to get better at home with them charging around. Now I don’t have the slightest doubt what triggered my depression, ask anyone who has lived through it and they will tell you it is never a simple one single thing that is the route in, it is a million things all made worse by not having been dealt with at the time, but what pushed me over was yet again being told just after a flare that I wasn’t ill and it was all in my head. It is amazing how you can go through life with a traumatic event after traumatic event, all written about in here, then something that has happened before, appears and totally destroys you. Whether it is through depression or something else, fatigue is probably the hardest thing to deal with because no one around you has the slightest idea what it is like. Everyone understands pain, they may not all understand what it is like to have chronic pain, or what it is like to take painkillers only to discover that you will never be pain-free again, but people can empathise to an extent. No one seems able to empathise with fatigue, it is such an alien concept that you can be so tired and that sleep makes not the slightest difference. Worse than that though is that it really is like no exhaustion that I can compare to anything else, there is no activity or event in my life that comes close and like everyone else I have gone through sleepless nights with sick kids and days without true rest due to events around me, but even then, I never felt anything close to true fatigue.
At the start of this post, I made a pathetic stab at describing how it feels, now reading it back, well it just wasn’t strong enough and I honestly don’t know is I have the words required to explain it any better. Descriptions require two things, the right words and something that you can compare it too, but honestly there is nothing close to it. What I can say though is it is different now to the fatigue when I was depressed in one vital point, when depressed I found myself crying I though because I was so tired, these days, being tired alone doesn’t make me cry, it can piss me off something rotten and even make me angry with myself, but I don’t cry. I just sit and feel like a zombie, fighting my way through a world that has plotted against me by giving me my own personal gravity field. Like everything it has it degrees, good days and bad, but it also does without a doubt have phases as well. I have tried over and over to look for a pattern, something that I can then be able to avoid in the future, there is nothing. Good food, sleep and a quiet life makes not the slightest difference to anything, you can’t bank sleep, or wear yourself down into a pit you can’t climb out of, or any of the other things I have read or heard. Fatigue is a killer and one of the reasons that I honestly don’t believe anyone with MS or Fibro should be allowed to drive, sorry if that annoys anyone, but I know without a second thought, that once it hits me and it can just appear from nowhere, I would be a total danger on the road. Fatigue is a physical sensation that is totally overpowering as it also works on your mind, your eyesight, dexterity and everything else, you could so easily feel totally fine when you went out, but then find yourself having to drive home, with a body that just isn’t up to it. It is also one of those things that for me at least didn’t respond to medication, yes there are drugs that are supposed to keep you awake. I say supposed as well it did work for me for a very short time, then suddenly it stopped, in the end I was able to take my three tablets, lie down and go to sleep for hours.
Tiredness and fatigue just aren’t the same thing, there is clearly a similarity in sensations, but fatigue can’t just be fixed, unless the underlying condition that is causing it is fixed first. It is not something to be ignored or brushed aside by anyone as there is always something serious behind it, without exception.
Please read my blog from 2 years ago today – 20/01/13 – A plea to the web
I know without asking that you along with me and everyone else in this world speak faster than our brains have a chance to catch up with. Words tumble out of our mouths and those around us look at us as though we are stupid, then suddenly we realise just what those words where…….
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