It’s been ages since I posted a personal update here, so I figured it was time. The last little while hasn’t been great in some ways. My health has been not so good, even by my standards of ongoing not so good health, but it took a serious dive about a week ago. The background to this is pretty much impossible to summarise, but I shared some detailed information about it here in July, so if you read ME and me: Living with Myalgic Encephalomyelitis the rest of this post will make a lot more sense.
I went from physically struggling but sort of coping to literally cannot in the space of a day. All it took to push me over the edge was a couple of nights with not quite enough sleep and one busy-ish day. This is a thing that happens and after almost a decade and a half, I should be used to it. But I’m not. A crash like this never stops being awful, at least partly because I have no way of knowing how long it will last. Sometimes it’s a couple of bad days, other times it’s a couple of bad weeks, and then there are times when it lasts for months or longer. The non-crash times are still pretty rough, but I can mostly handle those.
At the start of last weekend, I was a total mess. I couldn’t sit up, feed myself or get to the bathroom without help. Breathing was difficult because it requires energy to breathe and I didn’t really have any. I was super grateful to be able to get online for a bit and feel like part of the world, albeit not the physical world.
Over the last few days, I’ve gradually reached a point where I can sit up for a bit longer at a time, make simple food for myself once a day and potter about the flat slowly as long as I’m careful. Frustratingly, I can’t use my walking frame or canes or more than a day at a time because my arms, shoulders and upper back can’t take it. If you could see my arms and shoulders, this would sound ridiculous. I have substantial muscles that I’ve worked hard to build. They just don’t always function the way I’d like them to.
As much as I’d like to be all bright, shiny and positive all the time, it is really hard to maintain consistently high levels of enthusiasm when things are like this. I keep reminding myself that I don’t owe anyone fake smiles and I have no obligation to be an Inspirational Disabled Person or prove that I’m Trying Hard Enough, but it’s not just that. Enthusiasm is my natural state of being. I get excited about stuff. Like, annoyingly excited. I’m highly motivated and love to be productive, and it busts my head when I can’t be.
So I’ve been feeling pretty down. It takes a lot for me to actually recognise that and even more to admit to it. It’s not like an all-encompassing depressive episode or anything because I still feel happy when I’m writing, or chatting to people online. I still feel inspired to take photos and have really enjoyed getting back into setting up tiny still life scenes that I can work on and photograph without having to stand up. So I’m generally OK, I think. Everything isn’t awful. I’m not falling apart in an ongoing way.
But I do fall apart in small ways. I’ve been doing quite a bit of waking up crying, avoiding mirrors and breaking down over seemingly insignificant things lately, and I’ve been struggling to process the realisation that in-person social interaction is contingent on doing things that will make me severely ill afterwards. I’m grateful that I get invited to things, even if I can’t usually go to them, and that I have friends I can talk to online, but when it comes to actually seeing people and doing stuff, most of the time I just can’t. If it was temporary, I’d be able to deal with it better. But it isn’t. It’s my normal. When I’m feeling physically less terrible I can be more philosophical about it, but when I’m feeling like this, when I get out of breath from sitting up at the computer and typing, it just makes me sad.
So I’ve been trying to strike a balance between accepting and processing the (completely understandable) sadness, and focusing on things that help me to feel less sad. I’ve been burning my favourite incense, colour-coding my notes in Scrivener with pastel rainbow shades (my NaNoWriMo project is beautiful!), drinking delicious tea, sitting on the back step and watching the birds in the garden or lying on the couch with the door open and listening to the rain.
As well as the social interaction realisation, I’ve also realised that it is entirely possible to recognise all the joy and beauty in the world while still feeling sad. Those are not mutually exclusive events, but it’s hard to stay up-beat all the time. It’s hard not to be angry with my body. And I don’t want to be angry with my body. I don’t feel comfortable with the battle/fighting language that is often wrapped about the experience of living with a disability because I am not at war with myself. I’ve learned from experience that always pushing harder and being in a state of conflict is counter-productive, that it’s healthier to find acceptance, and that acceptance is not the same as giving up. It’s just being OK with where I am now, wherever that may be, and understanding that the best way to get to a better place, however temporary that is at any given time, is to look after myself.
I recognised some troubling old patterns and coping mechanisms nudging at the corners of my mind, so I’ve taken steps to deal with them sensibly. When I feel like any aspect of my life is out of control, I start to think about not eating, as if that will fix everything. That is A Bad Thing and I absolutely cannot indulge those feelings because I know where they lead.
So yesterday, I removed everything to do with food and calories from my Fitbit dashboard because that stuff isn’t relevant right now and I’d found myself getting really stressed out every time I thought about not being able to exercise or having to prioritise accessibility when it comes to what I eat. I feel relieved now. Being able to keep an eye on my heart rate and sleep cycles, and make sure I remember to drink enough water (I am terrible at that!), is really useful, and when I’m in a place where the other stuff is relevant to my existence again, I can easily pick up where I left off.
Right now I’m working on self-care. When I have a little bit of energy, I work on character development and outlining for my NaNo project, or I scroll through Twitter or Ello, or I chat with my fellow DeviantArt volunteers. If I want chocolate, I eat some chocolate. I wear my comfiest pyjamas. I cuddle the cat a lot. I listen to my favourite music and watch trash on Netflix. And it’s good. It’s helping. It doesn’t help what’s happening in my body, but it helps me to cope with it.
I’m hoping to be able to manage a trip to the supermarket tomorrow with my husband. I know that doesn’t sound very exciting, but I haven’t been able to get out of the house for over a week now and I’m going kind of stir crazy. Also, I suck at online food shopping. It’s been a few days since I’ve used my canes, so hopefully my upper body will deal with those for a little while. I don’t have any major plans until October – a weekend of witching and indulgent food with friends mid-month and a couple of nights at a lovely hotel over Samhain with my husband – so if a supermarket mission ends up wiping me out for ages, at least I don’t technically have to be upright again for a few weeks.
In the meantime, I’m really excited about my writing projects and photographing small things, I’m enjoying my Patreon adventure (my Patrons are amazing and I’m so appreciative of their support!) and I’m grateful for all the good stuff ❤
Finally, please read the Matchstick Theory. It’s a disability metaphor, like the Spoon Theory, but way more accurately reflects how energy and ability resources are affected by external factors as well as day-to-day needs and choices.
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