Bed Life and Beyond

I’ve reached a point where sound is hurting me physically. Particularly loud sounds. Loud voices with no melody to them (foghorn voices), vacuum cleaners, leaf blowers, horns, plastic bags, cymbals, trumpets, trombones, saxophones, cars revving: my worst nightmares right now. They feel like hundreds of little spears hitting my arms and torso and ears and the sides of my head.

I feel really on edge. My apartment is facing a busy road. The traffic noise hurts. I can hardly wait to move to the apartment I’m waiting to move to, which doesn’t have much traffic noise at all. I’m in a long process moving there.

This morning and yesterday morning I had two very loud-talking support workers here. I had to plug my ears for some of the time, as the pain built up and built up the more they talked. It was agonising. I gritted my teeth through the bare minimum they needed to do, then I sent them home early. Their voices physically hurt me.

What do I do? Try to stay away from people with loud voices, and away from loud noises when I’m over-sensitised to sounds. My tolerance will get better again. I need to be really gentle on myself while I’m struggling with this level of symptoms.

Pushing through it will only cause me harm. It will only accelerate the increase in my symptoms until I’m having seizures and having other symptoms which are much more serious and more dangerous. Pushing through can make my baseline of abilities deteriorate too. I definitely don’t want that happening.

I can wear earplugs. I don’t like doing this for long. I’ve got an extensive trauma history and I feel unsafe if I can’t hear if people are “coming to get me,” so I prefer to be able to hear. It keeps my panic levels lower, generally. Sometimes I do wear earplugs if sounds are hurting too much, and especially if someone I trust can stay with me.

Some people with Functional Neurological Disorder (FND) can experience pain similar to this with sound sensitivity. That’s why I get this. Also some people on the Autism Spectrum can experience pain similar to this with sound sensitivity. And some people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) can experience pain like this with sound sensitivity when they’re having a flare. Apparently the fatigue I have with my FND can be classed as ME/CFS. I have the same symptoms, plus more with the FND.

So I’m in bed, as quiet as I can be. No volume on my phone I’m writing and doing other things on. No music or tv or other noise on in my home. I’ve got all the lights off, to reduce light stimulation too. It’s daylight outside, so there’s enough light to see my way around inside. I’m just resting and not having any expectations but getting through time gently now.

I know in time my tolerance to sounds will increase again, if I can rest away from them as much as possible.

Until then I take all expectations off myself, and remove support workers off my shifts whose voices are loud and will cause me pain and perpetuate this. Even if it means I have no support worker coming in tomorrow. If this happens too much I’ll have to take them out of my support workers’ team and replace them with others with softer voices. It’s possible their voices are one of the things which has caused this flare up.

So that’s what’s happening here at the moment. Another day of life in bed.

…A few hours later and I’ve got a migraine. I’ll have to pay more attention to notice if my noise sensitivity is a regular precedent to my migraines or not. I get quite a lot of migraines, though less now I take a migraine preventative. Usually my second dose of migraine medication starts working. So I’m awake waiting six hours until I can take that dose.