Observing quietly

Hey everyone. 🙂

I know it isn’t long since I last posted, but it feels like much longer. Over the past few days I’ve been really wanting to write a post again. I’ve managed to write emails but when it came to writing something here I haven’t been able to. Most of this will be things I’ve said before, but I wanted to get them off my chest again.

I feel that my mental state is stagnating, although I still think meditation is helping. The same goes for keeping in touch with a couple of people from the site – it definitely helps to talk to people. There have been times in the past where, if I’d been forced to spend so much time in the dark and alone, particularly when I’m so inactive and exhausted, every aspect of the situation would have breathed new life into my depression. To some extent it’s like I have new strength inside, holding it at a slight distance. But it’s like the worst of it is held behind a gate, and it still comes crashing down often. I’m a long way from feeling like I can control it.

I have recurring waves of suicidal thoughts. They usually wash over me at random times. Some days are worse than others. There are times when all I want is for someone to understand how excruciating it is, but they’re often the times when I can’t communicate very well. And I know that only I can change it. But there are times when I lose all confidence in the possibility of change. Generally I’m holding onto it, but there are times when I feel hopeless and empty. There are so many times when the suicidal drive exists and nothing else.

A couple of days ago my dad, brother and niece and nephews came round. It always makes me anxious but I managed to act relatively normally, even speaking and answering at a normal rate and doing more than just sitting, which is all I could manage to do the last couple of times I’ve seen them. Most of the time things are a lot worse. More and more lately, I’ve been finding it so hard to have short conversations with my mother. I asked her to talk more quietly the last time she spoke to me. Usually I end up feeling lost and confused, with my head and muscles hurting. I can usually tolerate noise, but I think it’s making it harder to take in information now. Combined, those problems seem to set off all the pain. I’m not sure if I’m becoming more sensitive to sound. I’ve been playing music because I didn’t want to lie in silence, but at the moment even very faint music is bothering me.

The worst part of ME/CFS, as I experience it, is the cognitive side of things. That part has been relatively stable for a long time, even when my muscles became weaker and more painful and I became more sensitive to light. The fact that it seems to be getting worse is worrying me so deeply. I mentioned it to my mum. I think she’s starting to see it more. She stared at me anxiously before she left to stay at another house tonight, careful to check that I was still responding. I know I feel more depressed when I’m alone for a long time, but part of me often wants to be alone these days. Listening to people is usually really nice, but it’s becoming so draining and painful. Reading and commenting here is becoming harder too. I keep losing track of my thoughts before I’m quite sure what they are or have a chance to write them down. Writing has been a comforting way to communicate lately, while it’s been getting harder to speak and listen, but those problems are making their way into all spheres of my life. The cognitive dysfunction is something I’ve been able to accept, at least for the time being, but it’s becoming horrific. It’s been a long time since it felt this harrowing, not to mention frustrating. Sometimes it’s agonising. I’ve had some moments of sudden panic lately, which I think are mainly caused by the confusion and worrying.

I wrote this in an email yesterday and it sums up everything that’s happened in the past few days, both re my own problems and hearing others’. They seem to have gone incredibly slowly.

Lately I’ve just been observing everything quietly and watching certain things getting worse, and hoping there was something I could do… but not really knowing what.

Maybe I should be putting all my focus into finding out more about the alternative cures for ME that I was reading about a while ago. Maybe I should be trying to cure my depression first. Maybe I should try medication again. Maybe I should try to read more about treatments for depression. Probably I should be piling into all of it. It’s hard to take practical steps when, every moment, you forget everything. You have to constantly re-piece your life and surroundings and the last thoughts you had together like a jigsaw. It’s hard too when depression makes it a lot more difficult to hold onto any strength and motivation you have, and when even thinking takes so much mental energy. There was a time long ago when I was always confident about what I wanted to do with my life, and a part of that person still exists. I don’t like to feel lost when I know it’s holding me back. I don’t like to feel weak. I don’t like to give up on anything, anyone. But sometimes I wish I could give up on myself.

I’m worried about the possibility that certain things aren’t under my control. I wonder whether I’m delusional about them, or whether I’m letting depression make me doubt the things I believe in. Usually I think it’s the latter. I realise that telling myself there are things I just can’t control wouldn’t allow me to change them. Nevertheless, it’s difficult to tell what’s possible when depression often guides the way you feel.

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If only I could understand the things you say to me. When you see me again and give me a hug and say, ‘lovely girl!’ like you’re so happy just to see my face again… if I only I could feel your arms around me. If only I didn’t perceive the world as something so distant, like I’m already watching it from below the earth.

If only when my niece says, ‘I love you,’ I could say it back and not just know it, but feel it. If only I felt your conviction when I talk about the deterioration of my brain and you say, ‘It gets better, that part.’ If only the simple effort of registering every colour, every word, every object and sentence, didn’t leave me in a state of permanent confusion. If only I could sit and read a book again without any difficulty. If only I could run outside and breathe the air and feel the rain… hold my body without any effort, without all the pain and discomfort… never feel the weakness of my breath again. If only I could run, and run, until all the horrors of this existence dropped away.