Saturday 4th August
Bonjour! I’ve been *trying* to learn some phrases in French for my trip to Canada, at the moment it’s minimal what I know but I’m trying. I’ve made an appointment to get my passport sorted in Liverpool on Monday. And then it’ll be delivered within 8 days. Can’t wait to get the last bits of major planning issues sorted for Canada.
Did my medication competencies, so I should be able to start doing my own meds now as up until now the staff have had complete control over them. It’ll be nice to take some more responsibility for them.
The main issue I’ve been having at the moment is sensory issues. I’ve always had issues with certain things, like the sound of scissors next to my ears when having a haircut, the feel of velvet and silk, buzzing noises, and many other things. I’ve also had overloaded senses for as long as I can remember. But recently it’s been sending me into complete meltdown when I get overloaded. It’s like everything is happening at once and I’m still not 100% sure what my meltdown triggers are. It’s really difficult, it’s hard to describe what it feels like, sort of like everything feeling more overwhelming. Like you know when you get an itch and eventually the itch is the most giant thing, the most consuming thing in the world. You can’t think of anything but the itch. Well it’s like that but with everything. All the things I can see, hear, feel, smell and taste. But the things I struggle with the most when I go into overload are bright lights (well any light), any noises and the things I can feel.
Like for example now I can feel my wrists leaning against my laptop, my fingers hitting the keys on my keyboard, and my right ear is itchy, my right foot is numb, I can feel some pain in my knees and in my back, I can feel my hair resting on my shoulders, and I can feel myself sat on my bed leaning against the wall. I can feel the ache of my eyes and I feel it when I blink. And I feel my stomach rising and falling with each breath.
Now imagine each of those touch sensory things being overwhelming, then imagine that for all 5 senses. Imagine it being physically painful to hear someone speaking to you, never mind hearing and feeling yourself speak back. It hurts to feel yourself breathing because it’s like your brain playing multiple games of ping pong at the same time and focusing on all of the movements in each game at once. It’s also really exhausting, being in the level of panic that it causes for me, it’s super tiring. And when your knackered to start with, it’s not helpful.
I had a particularly difficult meltdown the other day (Thursday), normally I can switch off my music and make my environment the calmest possible with the least going on. Normally after around 20 mins of this calm room environment, I can slowly work back up to the normal level of stimulation. So when after 20 minutes I was at the same level of panic (don’t know how else to describe it) I went and sat in my wardrobe with the doors shut. I had my pink owl hooded blanket with hand pockets on and I had my earphones in my ears, just to try and muffle noise a bit more. I also put my fluffy teal blanket over my legs because then if moved the I wouldn’t feel the clothes hung up in my wardrobe brushing against my skin as much. I pulled my hood down so that I couldn’t see the light from my window through the crack of the wardrobe door.
People came in a couple of times to see where I was and check I was alright, I’d locked my door because I didn’t want one of the other residents to come in and see me like that. Anyway the staff unlocked it and checked where I was (in my wardrobe) and the opened the wardrobe and walked away. Looking back it was strange that they walked away.
I came out of my wardrobe after a couple of hours, I went downstairs and one of the staff saw me and she told the other staff that she’d found me. I think ‘found’ is a bit of a strong word seeing as I wasn’t hiding, they’d came into where I was, and I’d walked down right in front of her. But whatever. Then I got asked loads of times where I’d been, and what I’d been doing and when I got back. Because talking was hard, even them speaking to me was hard, all I could get out was ‘wardrobe’ every time they asked I just said ‘wardrobe’. They kept on saying that I wasn’t in the wardrobe because they’d checked 3 times. They had checked the wardrobe I was sitting in, not seen me and walked away.
So then I managed to say the word ‘meds’ and then I got interrogated about whether I’d taken anything, or if I’d been drinking. I just shook my head, I wasn’t on anything. I was just struggling with the sensory things around me. I took my meds. Every single time I take my meds I have the on the 5th step of the stairs with my feet on the 4th. I then take my meds in the order in which they were prescribed. So for example, my antipsychotic medication is 1st as I’ve been on that for around 4 years, then my antidepressant comes next as I’ve been on that for around a year/ 18 months. Then I have my tic medication next as I’ve only been on that for just over 6 months. And at the moment I’m also taking a vitamin D supplement last because like I’ve mentioned before a blood test showed it was low. But when I took my meds then I took them on a chair in the kitchen and I took them all at once. This worried the staff even more because that’s not like me at all.
So I’d taken my meds and then I was asked if I’d like to sit in the games room and I nodded. I went to sit in there and a member of staff came to sit in there with me. He obviously still thought that I’d taken something because he kept on asking me if I had. He asked me how I was feeling and I couldn’t find a way to vocalise it, or I shrugged my shoulders and then he asked if I could guess or try to say it. So I sat and built up to it and eventually said loaded, he asked what I meant so I said over as an explanation. So then he asked ‘too much going on?’ and I nodded. Then he asked what I needed and he asked if a dark quiet room would help. I nodded again. He left the room a few minutes later, presumably to do some paperwork. I switched my bearded dragon, chicken’s heat light off. And tried to calm down a bit more. Eventually was calm enough to get some food, it was around 10pm by now and I went and made a sandwich with my heart beating hard in my chest.
By the time I was calm again completely it was around midnight. I had the longest meltdown I can ever remember having. I fell asleep on the sofa soon after, I had no energy left to give. I woke up on the sofa around 6am on the Friday morning.
I have meltdowns pretty much everyday, it’s like tic fits for me, if I go a day without I’m surprised and grateful. I’m looking at getting some sensory help supplies. For example on my list so far is…
- Weighted blanket
- Weighted compression vest
- Ear defenders
- Sensory chew – my earphones aren’t a long term solution.
So yeah hopefully I can get some of them soon to help with these times. And I hope and pray that the other nights events when I had that long, long meltdown, isn’t a sign of what’s to come. That would suck.
I really want to go to quiet hour at morrisons, they have the lights dimmed, the music off, the noises lower and everything’s just generally a lot calmer and less stimulating. It would be really helpful for me as I find shopping very stressful. But I’m also thinking would it be okay for me to go? Where there’s less noise it means my tics would seem even louder and I’m worried I’d stick out even more than usual. So I don’t know. I’m thinking it might not be fair on other shoppers who find the noise stressful. I don’t want to make the one hour a week that some people find it calm enough and feel able to shop, stressful and inaccessible. I might try it and if it’s awful then I don’t have to do it again. It would just be good to try. If you haven’t heard of it, it takes place from 9am-10am every Saturday morning. I think it’s a trial at the moment but if it’s popular it’ll be likely to stay.
Anyway hope you’re okay.
With love and dinosaur hugs