Today is Tuesday 3rd May 2022 and the time is 04:30, yet again I am wide awake am I anxious or losing my mind ? I feel like I have a million thoughts, plans and things I want to do with my life but I feel like I’m losing a battle with time.
Unfortunately I get nights like this due to my Myalgic Encephalomyelitis and normally after reading for a while I am able to finally get to sleep. Sometimes I have the odd few nights in a week but at the moment I am awake more nights than I actually sleep. Tonight has been particularly bad as I can’t get my pain under control and when the pain is as severe as it has been recently I don’t think that this is going to be a one off.
I have developed lots of sensitivities that I never had before I was ill, the first real sensitivity I started having was to alcohol. I was never really the type to have a hangover but one day after a night out I woke up vomiting a black liquid up and no matter what I did I couldn’t move around without feeling severely nauseous. Now my sensitivities include skin problems, sensitivities to aerosols and artificial smells, I can feel a smell covering me, it’s like it is enveloping my face, leaving me itchy and inflamed. One of the worst has to be cigarette smoke.
I sleep with my window open as I always have to have fresh air coming into our bedroom no matter the temperature outside. Yet if one of our neighbours smokes outside I can feel that smell coming into our room, I can feel my face becoming red and dry but the worst part is that it doesn’t leave. It doesn’t clear out leaving me to smell & taste it all night, my skin will become covered in red blotches and painful to touch in some parts.This also happens with artificial smells and aerosols but not as severe.
When I first got ill we had to change all of our cleaning products in the house to a Polti steamer, we had to change deodorants, shower gels, hand washes, washing powders and fabric conditioner. The anxiety to cleaning and OCD practices started around this time, for me this includes washing my hands excessively as well as having to wash anything before it touches my skin. If I order something online like clothes or bedding they have to be washed before they come near me. I also have a problem using mugs, cutlery, dishes or bowls without rinsing them under boiling hot water before I use it.
When I am very bad I also develop pin point bruising, this can be just a small cluster to larger clusters on my arms or tummy. Right now I am unable to have anything touch a spot under my ribs on my right. It feels like tiny needles with even the lightest touch. The feeling on my face is now spreading onto my neck and it feels like itchy burning , even the skin on my nose under my glasses is now very sore. This itchy will have me scratching until I can finally fall asleep. I am unsure if any of this is due to sensitivities within our home or something within my body as this gets worse when I am severely ill.
Myalgic Encephalomyelitis is not my only health issue. I also have Endometriosis, Steatohepatitis or Non Alcoholic Fatty Liver and De Quervains Syndrome in both hands. The steatohepatitis was diagnosed by a liver biopsy after having very high ALT results in my blood it was around this time that I started noticing the bruising on my arms. I’m not intelligent enough to really go into my health issues other than the names and a general idea, I do know that having Endometriosis is very painful and I know that having De Quervains syndrome in both hands also causes me pain. I also know that De Quervains syndrome has affected my dexterity and leaves me unable to do a lot of the things that I used to.
I can’t switch off, I feel that my mind is bringing up so many different scenarios, times from my past life and the plans that I had for the future. Could it just be exhaustion or living on adrenaline that is making me feel like I can’t seem to switch it off. I can’t think straight as everything feels like it is going off on a tangent, I am thinking of one thing and then it goes off on another. I can’t seem to quiet it all down. I keep getting a feeling that something bad is going to happen, it’s like every phone call could be a call that blows my whole world apart. Every thing I do I have gone over a million times in my head and I have thought about every way it could go wrong, I always feel like I have to be steps ahead of every single preconceived situation.
I feel so lost and alone.