Half-asleep rant

Hello all. 🙂

I tried to keep this short – and failed. I just needed to rant. Not about anything in particular. I seriously need some sleep, so please forgive any bad writing.

Today I used my wheelchair for the first time. It’s on loan for six weeks. Who knows, maybe in that time I’ll get outside more and it’ll help me start to feel less depressed. I’ve been so much worse lately, and I think spending more time in the house and with relatively little natural light has caused a lot of that.

This evening I went to a local light-themed festival. People make installations, play music and so on around the town. There was a tiny eight-seat solar-powered cinema, and bands playing, all kinds of projections onto buildings and so on.

A couple of hours before we went out, I’d started to get more tired. So I rested for a while. Somehow, while I was resting, the depression suddenly started to feel a lot more severe – maybe because my mind wasn’t particularly engaged anymore. For a while I felt okay, but the suicidal thoughts came again. Even when I controlled my thoughts, I still felt the build up of panic and despair. I still felt really edgy and panicky when we went out. I felt self-conscious in the wheelchair. It feels awkward being so low and moving towards crowds of people, or being tilted backwards to get onto curbs. When I’m already anxious I don’t like attention being drawn to me, which it often was when we were trying to move through the crowded areas. The people I was with also tended to stand behind me by the person pushing, which made it harder to listen to them and distract myself.

I wasn’t confused to the point that I can’t interpret anything I see or understand the things people say, which often happens when there’s noise and lots of people around. I was doing quite well while I was out. That made me feel sick with worry. The things people say, any background noises, are so vague and confusing to me, even when I’m feeling better. The derealisation that goes alongside the depression makes it worse. I don’t usually feel as suicidal when I’m around other people and there are so many things going on, but at some points tonight it was all I could think about.

My mum pushed my chair most of the time. Then one of my mum’s friends carried it up a hill for me while my mum and another friend each took an arm to make the walk easier. Then he offered to push me for a bit. He kept talking to me, and I felt a bit bad because I was so anxious I couldn’t say much back, but slowly it made me feel so much better. He made small, funny comments about the things we were looking at, so I didn’t feel worse trying to follow longer conversations. The words made more sense than usual. I laughed a few times and finally felt some relief. Most of the suicidal thoughts become more vague and eventually left after a while.

The depression is like the confusion though. Even at its best, it’s not something I want to experience. It’s still close to feeling unbearable.

Tomorrow my mum is having a party. She’s been telling me not to move around too much beforehand, and encouraging me to stay seated when I can and rest whenever I start to get ill or tired. She’s been particularly cautious after my last appointment at the ME/CFS clinic made me much more ill for a couple of days afterwards. Hopefully being out tonight won’t leave me worse tomorrow night, especially if I rest in the day.

I’m just tired of this being the best I can hope for or work towards. I feel like death is hanging over me every moment I’m conscious. I don’t want to feel that darkness, that feeling of deterioration, of wasting away into nothing, of emptiness.

Sometimes when I try to pull myself back to the present moment, I can make the derealisation lift. Just gently, for a moment. I can hold the moment so it lingers. I start to see again, almost feel the world around me again. Just vaguely. And it disappears in an instant. Usually I can’t do it repeatedly, and it doesn’t happen every time I practice.

I don’t feel like I can make this work. My depression is still painfully severe, despite being a lot better than it was once was. It’s still debilitating in itself, though I tend to focus now on managing and trying to live with ME. But the depression needs attention too. They both do. I can’t live like this. It feels likely that I’ll wake up one day and find that another several years have passed, without a moment of clarity or happiness.

While I was outside, the idea of recovery started to seem less possible. There are so many moments in the day where all I want is for it to end. I need to look for help again. I don’t know what kind of help I want. I’m torn between several options. My anxiety and confusion usually hold me back – every time I try to think it over, I constantly lose track of my thoughts and end up back at the start again, trying to remember what the options are. My mum is less busy next week, so she said hopefully she’ll have time to look at some ME stuff with me: the alternative treatments I’ve been looking at, one her friend told her about, and starting to get out of the house more often again.

I need a change badly. Every day I try to stop the depression getting too severe, and hold myself back from experiencing the most severe, painful effects from ME. And every day now the suicidal thoughts are overwhelming and often excruciating. All I want is for it to change.

I have so many thoughts I want to write down – fragments of thoughts… That I’m so accustomed to depression, I forget sometimes how severe it is. That I need help. That I don’t often think about the past but I keep wanting to be able to write like I could in the past, without all the difficulties there are now. That I want to move, to see colours again. To understand. I can hardly understand my own words sometimes. Every letter is confusing to me, something I can’t quite process.

That the last time my nephews were here I left the room to lie down and my brother told them I had a headache, though more than anything it was the exhaustion and confusion. And when I came back in, still not feeling well, my nephew handed me a hot water bottle and brought me a huge bowl of popcorn so I didn’t have to get up to get it if I wanted a snack. It almost me cry.

That I used to have a functioning mind. When I was at school I used to be terrible at exams, because my long-term memory was horrific. But I had abilities. My teachers thought I had potential. Once my English teacher gave my granddad her email address, and I never emailed her because I was too ashamed to tell her what happened… I thought all other people would see was that I left everything behind. I couldn’t explain what had happened or why I never went back to school, why for a long time I could hardly leave the house. Things have improved so much, despite the onset of ME, but I can hardly see how sometimes.

That the years get faster as you get older. That every year I want to live or die before my birthday comes around again. There’s no use thinking about the past or future right now, but this moment alone is enough to make me want the quickest end possible.

I feel like I’ve ranted enough now. I knew I wasn’t really well enough to write tonight. It was mentally exhausting and it took me hours, but maybe now I’ll be able to let go of some of those thoughts. I just want the depression to become less severe. This is too much. I can leave behind any painful thoughts I have if I make the effort, but I can’t stop the feelings – the agony or confusion or derealisation or disconnection from loved ones. Hopefully one day I’ll learn.