The chronic illness gods did not take kindly to my advertising their kindness and flaunting my good sleep luck.
After writing my last post, I had two tossy-turny not-restful nights that left me depleted and suffering brain drag.
THEN, the next night, my husband closed my blinds and curtains, but failed to notice that one window was wide open, so I was woken by planes, trains and automobiles at daylight. Plus, wind punching the closed blind in and out set up a sort of strobe light effect in my room.
THEN, the very next day, my husband untaped one of my curtains (they’re taped to the wall to block out every sliver of light) in order to fix something, but forgot to tape it back up, so I was woken at daybreak again by the bright line of sunlight on the wall.
THEN, we had some glorious weather and I sat for hours in the sun for the first time in 7 months and the burn on my back made sleep very difficult for two nights in a row. Every time I rolled onto my back or the blanket slid along my skin, I woke up.
THEN my painful spasming bowels and extreme swollen distension from constipation gave me no rest for two nights. Like sleeping with concrete pumped into your gut.
AND it all culminated in a terrible 7-hour drenching-sweats-and-night-terrors sickness last night. I woke up over and over soaked from my forehead to my toes and finally, at 7am, I woke myself sobbing. I’d just held my dying dog in my arms while I begged someone to help. He had two bloody stumps for front legs and half his face was gone and nobody in the crowded room was helping (people’s lack of competence figures prominently in my nightmares. I think my loss of independence has shaken me to the core). My entire system felt as if I had just gone through that. I heard myself wailing before I was even conscious of where I was and I had called my dogs into my bed before I was fully awake, holding them, crying.
Such is this dis-ease.
I stayed in bed until 5pm, feeling wasted and shaky, and only dragged myself up so my husband could wash my bed clothes. I really hoped the poisoned nights were behind me (it’s been 3 months since the last one) and I have a different theory every time. This time I think it must be my body detoxing whatever my bowels can’t. I have that new sleep drug, Belsomra, but I really don’t want to mess with drugs when things have been going so well. So, fingers crossed the gods are a bit thick and this post makes them think, “Oh, you’re going to speak of your bad nights? We’ll put an end to that!”
Rag and Bone Shop of the Heart 
OH MY GOODNESS, LIZ. JUST SO TERRIBLY NOT FAIR! HUGS & PRAYERS. BJ.
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Thanks, my friend. I’m feeling hopeful that things will turn around tonight.
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Oh no 😦 I sympathise and empathise. I honestly think I jinx myself like that – I’ve seen people on PR not want to write their good news (positive developments) too as the same thing happens!
Recently I mentioned to my mum two good things that had been positive developments – both turned sour immediately… It’s crazy. One of them was sleep – my body had managed a few nights with deep sleep after I went back on LDN for first time since last autumn… And now I’m back with the sleep problems. I’m going to sleep at 12.30 to 2 a.m. then waking at 5 or 6 a.m. – wide awake as if it’s time to get up. * bangs head against wall* It is exhausting and frustrating. The night sweats too… I have wondered if it is my thyroid, early menopause, Lyme or some other infection???
I have a blackout blind but with regular curtains, and like you said the light creeps round the edges. I’m going to get blackout linings for the curtains and try your taping method.
The dream was beyond awful. ((Hugs)) I’m so sorry you are suffering. Xx
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My Mum hates that I talk about the chronic illness gods jinxing me, but, it is uncanny how things change as soon as you talk about it. LDN destroyed my sleep. Has yours gotten any better, Vicky? My night sweats seem to be all to do with over-exertion, over-supplementation and mast cell degranulation. Maybe just overall nervous system dysfunction. Yesterday, my husband put aluminium foil over my window. Sorted. Not a drop of light gets in. 🙂
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Hi E
The foil is genius. I had resigned myself to the thought that I need to live in a cave! I shall foil up and see what happens….can only imagine what the neighbours will think (cannabis factory or trying to signal to aliens?!! Lol!).
I have been majorly fiddling with the LDN – stopped and started it many times since I restarted it. I experimented with taking it every other night even. Now I’m back on it each night at 1.5mg. When it works, it does give me more stamina compared to not taking it.
The first few times I got the deep sleep. Now I do generally get good sleep once I get to sleep, but getting to sleep is still a massive problem. I realised some nights the ‘Body is ready for sleep’ sleepy feeling is so minute that I miss it (or delay it by finishing what I’m doing). If I don’t immediately drop what I’m doing and try to go to sleep, then I’ve missed the ‘window’ and am awake until somewhere between 1.30 to 3.30. I do not understand that – why is the feeling so tiny and unobvious? Why does it not come back easily? It’s so odd.
The night sweats possibly being mast cell related is interesting as I realised that mine would correlate with the emergence of my food allergies and intolerances. I’d missed that fact. My body od definitely on a state of hyper alert. 😦
V
Xx
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Sending you better days and nights. xx
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😦
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Aw, you poor thing. 😦
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