sort of tired

It’s nearly six years since I woke up feeling like a bus had run over me. I couldn’t move in the bed, never mind get up to go to work. After a while I managed to get some clothes on and walk the children to the childminder (4 doors away). For far too long, the childminder trek was as much as I could do. I did attempt to go back to work, but I couldn’t work out what I was meant to be doing and I couldn’t walk as far as the carpark to get home. Eventually, work and I called it quits and I moved to spend my awake times playing on the internet.

One of the many things I’ve learned in the last six years is how totally inadequate the word ‘tired’ is. Everyone gets tired. We all need rest. I hadn’t realised until it happened that there are varieties of tired, and that rest may not be enough. There may be no escape from the tired.

Wipe out: Brain and body both totally fatigued. Go to bed, sleep. Expect nothing. See you sometime.

Awake but immobile: Oh, but this is frustrating. Lie in bed, not sleeping. Think about the grub, the ironing, that form that needs filled in. Fail to move. Fail to sleep. Hope to get up before children get home from school.

Up, but not switched on: Annoyingly common. Up and washed, but somehow nothing gets done. Hours lost on the internet or television. Not writing blog posts, not doing anything for the Rare Disease Partnership. How did it get to be home time already? How come I didn’t have time to make that phone call? Oh, was that meant to be today?

Appearing to function: Dressed, out of the house. Drinking coffee. Anxious. Limited concentration. Liable to forget key tasks (Why am I in this shop?). Difficulty being sociable, but delighted to be in the outside world, so trying hard.

Functioning brain:  I can read, research, think, complete a variety of routine tasks. I can join the mental dots, even think creatively. This could last for half an hour or half a day. A run of several days with functioning bits will mean a clean house, admin done, a social life, walking and photograph taking. Go me!

.

Of course a functioning brain does not mean a functioning body and so the walking stick, taxis and phones can still save the day.

I’m still struck by how it’s not possible to go for a walk to wake up my brain- the energy is too limited for that. If my brain is that fogged, I’ll need all the resources just to nearly function. Going for a walk when I’m struggling would be practically impossible and totally counterproductive anyway. I get aches and pains regularly, especially in my right arm, left shoulder, legs, throat and head. I’m generally stiff and sore- hot baths, hot water bottles and the prime position by the fire help. I’m vague. My family need to manage me. My ME is a pain, it rules my life; but it’s not severe.

But even so, don’t I sound like an awful wreck? I’m not- just a little bit dozy, ditsy and in need of snuggling by the fire. I’ve adapted, pretty much. Imagine what it was like when I was worse, and before I started taking the tablets… I’m so much more fun these days!

It’s ME Awareness week, so forgive me if I go on a bit.

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26 thoughts on “sort of tired”

    1. I do, indeed. 🙂 I just counted 13; no anxiety tablet yet today! The bulk of mine are supplements rather than medication- anything that says it will give me energy or clear thinking!

  1. It all sounds so unpredictable, which must be half the problem as well…. never knowing how much you may be able to manage from day to day. How very horrid.

  2. Functioning well….. then the invisible plug in your feet is pulled and the energy drains faster than the bathwater!
    I can tie my CFS down to 10.15 am on 10-02-2002, it has been a frustrating journey back, but now I can manage a weeks activity before I need a ‘jammies’ day.
    You are doing well Fiona. Hugs and laughter have always helped me.

    There is one school of thought that ME/CFS attacks busy active people.

  3. An excellent breakdown of tiredness variations. I’ve certainly experienced most of those states myself over the years, though not as acutely as you, I’m sure. I often grope my way through the day seeming to function normally but all too aware I’m actually in the middle of a thick fog. I can’t imagine how debilitating ME/CFS must be.

    1. It’s the adapting, the changing expectations, the not expecting to go back to work on Monday morning that takes some getting used to!

  4. You really help awareness. This is certainly not foggy thinking, it must make it even more frustrating when you are in the middle of a fog patch. May you come out of them soon.

  5. Fiona – ME is tough and grossly misunderstood. But you my friend disguise and gloss and smile to the world and keep giving. You deserve a fireside moment – don’t deny or underestimate the need to do the time out thing. x

  6. I’m glad to know it’s ME awareness week. I think there are probably millions of people with rare diseases who appear to be well to those who don’t know them, and yet are struggling with pain and debilitating fatigue. Because I don’t see you in your struggles, if you didn’t talk about the weaknesses I’d have no idea. I mentally “see” such a clever, witty and very funny woman who loves her family and takes walks with cameras and goes to concerts…I’m really glad you are honest about what it takes to “be” that woman, Fiona. I also think acknowledging there are limits is good for everyone…none of us should push beyond what our bodies unkindly! Debra

    1. Debra, I used to wish I had a broken leg or something visible, so people would actually know I’m not functioning at full ability. Subsequently, I discovered that my walking stick, when I need it, will do that job!

  7. My friend, we are all so proud of you and what you have achieved despite all the “circumstances” – you should be honouring and acknowledging it 🙂

  8. I’m glad you went on a bit. You explain it so clearly, and I am filled with even more admiration for your determination to live life to the full, and the bewildering variety of tasks – including blogging – you achieve, sooner or later. Brilliant post.

  9. Sounds dreadful… life can be exhausting enough on it’s own without ME but you sound like you don’t give in to your illness easily, which makes you a bit of an inspiration actually. Why does it have to be that people who are inspirations have to suffer, and they always are the decent, kind and hardworking types? Seems a bit backward. Anyway, thanks for sharing.

  10. I totally love your definitions of the different levels of tired. I now want “Go to bed, sleep. Expect nothing. See you sometime.” on a t-shirt 🙂

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