Before ABI (and other injuries) I just did everything easily and lots on automatic. Being tired wasn't hard, just tired. Had NO idea what our 'fatigue' was like. Nobody does unless experienced it. Not tiredness, not fatigue, it's total collapse. Bit better now than at start when had to lie down after washing up. But still so awful. But so invisible to others because they (mostly) only see me (us?) when we're at our best, rested before = so can go out. We need to show what our days and this extreme tiredness are really like, but how?
I spent an hour this morning trying find thicker duvets and their covers. Can't regulate my temperature properly since ABI, get freezing when too tired and can't warm up (bath helps but none here) and when move get too hot. Bed has to be just right, before ABI no problem ever with all this. So found 3 duvets, all different weights, trying to guess/decide which might be right for at mo. Dithered, couldn't know or decide, ended up crying. Calmed down then chose 2 and put covers on, one light one (plus blanket/s) already on bed, now got choice of 3. But when go to bed often freezing, with hot water bottle and keep top on I warm up then shed top. How can I know which duvet? Nightmare. Then after all that and shower (too cold yesterday to have one, hate it: my sense of smell so acute I smell myself in bed if not showered/bathed) = absolutely exhausted so cried again. Every 'little' thing = such hard work, doing duvets and arms/back/buttons = hurts/hard. But try explaining this to others and they think I'm a lazy moany old cow. Only I know what a struggle every single thing is - and us here. But who else will listen, BELIEVE us and learn?
12 Replies
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Hi Muddled
Sorry you are having such a hard time - yes I think most of us on here can understand what hard work the most basic of acts have become. I described thinking as walking through mud once!
On a practical note, I am often hot then cold, so I wear bed socks (Very sexy!!) and gloves in bed then if I get too hot I can pull them off etc.
Catch you later got to go to work now
• in reply to
yes, as you say (mud), I say thinking through treacle.
I can totally understand everything you said ... It came as a massive shock as two days before my accident I had run 10k and hit a personal best of 200kg on incline leg press now I'm exhausted after like you say standing at sink or having a shower .. Even to the point that I have a strip wash every other day and showers in between it kills me having showers
Although I think it's got a lot to do with the barhroom itself., it fills me with terror as that's where my accident happened so any enclosed spaces terrify me
Take care oh and we can be moany old cows together
I've got the enclosed spaces thing terribly now: awake paralysis and suffocation in op theatre. Thought (before told that you're given paralysing drugs - after, not told before op) that they'd tied me down. Scary stuff, can't save yourself when suffocating,no escape. Torture. But I survived it!
I tried to explain how fatigue is to non BI people. I say it is like your stuck in cement, no amount of coffee etc will help. I have a problem of being too cold in bed and I wrap myself in wooly tights, thermal vests etc as my spascitity worsens when cold and like you since my ABI I cannot seem to get warm. My OT suggested an electric blanket, which has really helped me. with varied settings, I sometimes have on low all night, and does not use much electric.
I totally get the exhausting of having shower/bath/washing hair. It does seem a great deal of work, and then lye on the wet with a wet towel wrapped round me :). I hope fatigue improves for you, it does with time, albeit slowly, but there is light at the end of the tunnel. Without sounding patronising I try and plan my routine over the day/week, and found planning helped. I am not sure how you are on line, but I shop on line with help of my boyfriend for groceries, and a friend's daughter hovers and mops floors once a week. I feel less stressed. not knowing your circumstances, but this might help. My occupational therapist suggested routine and planning. I still do become emotional and especially whe fatigued.
Fatigue is not even like having a hangover, being up all night with a crying baby. I feel like its my body shutting down, slurred speech, left side weakness worsens, talking, finding words etc. It is truly awful. I hope you improve and you will in time, and grab any help you can. I
The trouble with shopping online is you have to plan really well and be good at lists = I'm not. And if they haven't got what ordered they choose something ridiculous like white bread instead of brown, a while ago, maybe better now? And must think in advance, can't get when need milk or anything. Lived here nearly 6 months and have only cleaned loo and bathroom floor, filthy, I hate it. Never cleaned loads but have never lived this filthy or chaotic ever. Downward spiral.
i have had the same for over 8 years now as you i did everything on automatic i know it is hard but you will have to get some kind of flexible routine so on your good times or days you get things done it has taken me a long time to do this and still i cant get everything right and probably never will but i am trying
Yes, when in own home (even camping without furniture but had good-easy cooker) managed better routine.Instant hot water basin, sink and bath, heat that controls instant (no heat here), curtains to draw (light/dark when needed) and not much noise.But forced out by debt and although my place not perfect for how I am since ABI it was far better than terrible place am now, here impossible and no cooker: salads and microwave meals for 10months now. Need ergonomic kitchen and things/lights that work.
I tried Co-enz Q10 aswell but found no difference,I think: can never be sure. My fridge and all countertops, desks, tables and floor covered with notes and bills/papers,can't do it. Could if easy and ONE task,too many and am in meltdown.
I thought thermals were for oldies, but because I cannot control my body temprature now I could not care less. I wear many layers and just don't tell anyone. Like you said, not too sexy, but hey I am at least warm now.
As far as fatigue goes I find I put my task lists into 30 minute slots, that way I feel I have achieved something. So for example if I am doing some decorating, I will:
1. Prepare a door frame
2. Undercoat the door frame
3. Gloss the door frame
4. Stand back and admire my work
That used to be one job, but now I am happy with four 30 minute tasks over several days/weeks. Things just take a little longer.
I can usually manage a 30 minute task and some days I can even manage 3 thirty minute tasks, but I don't mind even if I only do 1. The other day I managed an entire hour in one go! OK it was only sorting out a filing cabinet drawer, but it pleased me.
No-one is measuring you ... just enjoy life at your own pace. You find you drop all those things that are not important, and that is fun too.
Oh that sounds so sensible and sounds easy. I'boggled now with way too many tasks paperwork and errands (instructions to go to X but when I do I get send onto Y etc. never ending). When painting up my home to rent out I could doit: not papers, could see what needed doing and do it. Many hours each day: simple goal and could see my achievements every day.This paperwork/systems/invisible stuff = labyrinth, impossible for me and never achieve anything. Come to a big full stop with that, lost myself and energy used to have. Need to feel minor success at least to carry on.
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