I wish my body collapsing on me would be as intriguing as this house collapsing. But it’s really not.
It’s been coming and it’s understandable but it’s still frustrating and depressing. I had hoped to catch it in time and I slowed down but no luck.
I am now trying to settle in to the state of things. Readjust to the current level of tiredness, pain and cognitive limitations.
My days more or less consist of thinking of something I need to do and then forgetting it. This include basic things like eating, drinking, getting dressed or going for a pee… Then remembering it again, try and decide if I am able to do it. I usually have a time frame of 20 min of activity before I will have to rest for X amount of time…
Am still managing to get out of bed every morning which is good. Mainly because the pain means I can’t keep lying down. Silver linings…
I am not able to get outside much which makes me feel sad. Having to do as little as possible and yet just enough to keep me from getting caught in unhelpful thoughts. My main mantra is ‘you’re exhausted and that is understandable’ – cause dealing with my body collapsing also means dealing with all kinds of internalised judgemental crap that I’ve been socialised to think.
Cooking and eating are my main priorities as well as keeping my environment neat so that it doesn’t cause anxiety, overstimulation and panicky episodes.
I am having to rethink my plans for the next months. Simplify, slow down and be sensible. And worst of all ask for help with stuff and rely more on Rufus than I’m comfortable with.
Hopefully this first week will be the worst – I know I can make a difference if I just focus on food, rest and manageable movement and I’ll eventually get out of this absolutely awful sense of being caught in sand. Like when you are dreaming and you want to speak, open your eyes or move and you just can’t no matter how hard you try. Same sense of heavyness and confusion.
Then I’ll just have to wait and see how long it takes to recover to a more acceptable level of limitations…
Living Life Gently 
This was what it was like for me as a result of taking a huge, unnecessary cocktail of psychiatric drugs for decades. Just as you describe. I had severe and persistent insomnia that lasted five years. I was pretty much nonfunctional. Dropping things, losing track, annoying others, taking on far more than I could accomplish, and people getting mad and not understanding. My psychiatrist accused me of mania, even, back in 2013! I barely slept night after night. A sleep tracker told me I got no deep sleep at all and mostly was in hypnotic state while lying down, and that only for a blessed hour. I sustained myself on that. How, I will never know. That was it for five years. I now know for sure it was the psychiatric pills given to me by my doctor that I took as prescribed.
I made the decision to reinstate on the lowest, most minuscule dose of psych drugs possible that I was able to obtain on the street. I believe that seeing a psychiatrist or even GP is too risky since it would get a diagnosis back onto my medical record, which is the same as having a criminal record. When I found the drugs were not working and I was needing more and more, I switched to another that had a different half-life. This one I was able to taper. Slowwwwwwly.
I found a naturopath who recommended taking very large doses of thiamine (Vitamin B1) for the sleep cycle. I take 2,000 at night! I even repeat the 2,000 if I wake in the middle of the night, but I only need to do that occasionally. I eat grapefruit or kiwi at bedtime also, and take a few other vitamin pills also, nothing else mega though. I have been able to get off all the psych drugs completely and I still sleep. Finally.
Night time is no longer something I dread, and now, not only do I function during the day, I am working full-time and excelling at my job. Back in 2011-2014, I thought I was going to die of organ failure due to inability to sleep and worst imaginable exhaustion. Well? It is 2018.
Don’t give up.
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Go gentle – I got post viral fatigue two years ago and kept personal diary entries with similar tales. I went to my GP concerned I had ME. She told me to resign and to pace ie to rest for equal amounts for every hour of domestic work, or emails, or phone calls etc – she was right – half an hour to put the washing out, half an hour to lie and rest – my brain was so wired it took Radio 4, colouring books and knitting – that was it – too tired to breathe in and out, too tired to roll over, so frustrating. It took 3 months exactly to wake up and feel like myself again and another 3 months to get back to work. Two years on, it was the best thing that ever happened to me. I thought I was invincible, I thought I was a bottomless pit of giving. Seems I was wrong. Treat yourself with all the care you have doubtless poured into others/projects etc. You will come out the other side. Patience the key and for me the toughest part. Good luck. I am so glad I went through it. It was scary and hellish at the time. My whole life has changed for the better since. May yours too.
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Thank you for your lovely words and wishes!
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What you describe is how I feel emotionally sometimes. Asking for help, I’ve managed to slide it to when I am sensing it coming rather than when full blown abysmal thinking has set in.
I am sending you very gentle hugs from across the seas and believing they will get to you quickly.
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Thank you 🌞
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