The crash-ness of the last few months still hasn’t lifted (bad news) but cause it’s been going on for a while I’ve sorta-kinda managed to find a rhythm with it for now (good news). Bed is where I’m spending most of my time these days and when I am up (by ‘up’ I mean ‘able to sit’) I have between six and eight hours when I’m able to do things a bit. Four of those hours are spent working from home and the rest of the time is when I fit everything else in.
The local charity I volunteer with has a big fire festival coming up at the end of the month (so excited!) so there’s been lots to do in terms of online stuff and social media (which I’m responsible for), which makes me happy and doesn’t require me to go anywhere or move about much. My actual ‘going anywhere’ has involved a few hours on one day each week with my lovely group of volunteers and I’ve even managed an extra couple of hours some weeks for additional meetings. Being able to get out of the flat once or twice a week has been amazing. Being sick and not able to go out much, as well as being a disabled person in a very much able-bodied-person’s world, can feel so isolating. It’s so good to be around people and be involved in something with such a feeling of community, even if it is just for a few hours a week.
It’s been a bit of a struggle trying to fit in ‘normal’ stuff that involves not-sitting. Showers have been an every-other-day occurrence and they’re absolutely exhausting. It takes about an hour to recover from standing up for ten or fifteen minutes so it’s like “Five minutes after getting all lovely and clean, I am now roasting hot and sweating again”, which is a bit annoying. Cooking is a thing that happens once or twice a week and even then it’s only quick food that doesn’t take more than about ten of fifteen minutes to prepare. Cous cous and sauteed mushrooms is my favourite munch right now and it’s so quick and easy to make! Housework is a total impossibility these days so I am endlessly grateful to my husband for doing ALL THE THINGS and keeping me fed. I honestly don’t know how I would manage if I was on my own. Like I actually don’t know. I wouldn’t be able to. Every day I take some time to go through in my head the things in my life that I appreciate and that list is pretty damn long right now.
I keep thinking back to a few months ago when I was able to go for walks and do yoga. At first, thinking about that made me sad and angry cause I’m not very mobile at the moment, but I’ve reached a place where I can feel hopeful instead. I keep reminding myself that there are peaks and troughs, crashes and periods of comparative remission. I’m at a low point right now but I know that it won’t last forever.
It’s really difficult not to feel frustrated when I’m not able to do things though. Frustration comes naturally. Turning that around and trying to find a place for myself in my current circumstances that allows me to feel productive and happy is more of a challenge, but I feel like I’m getting there. This is the longest crashy time I’ve had in ages and I still have those horrible moments of waking up at 5am in a complete panic that THIS IS IT and I’m going to be like this forever, but I’ve stopped pushing against those moments and started accepting them, sitting with them, letting them happen, then working through them.
“So it goes” has become my mantra lately. When I’m feeling angry or upset or stressed out, I remind myself that this isn’t forever, that there will be better days. I don’t know when those days will be, but there have been ups to balance out the downs before so I know that they will come again. In the meantime, I’m focusing on what I can do in the few hours a day that I’m able to do anything. And I’m reading a lot. Reading is a wonderful escape and Google Play Books has become a very good friend of mine. Not only are there regular eBooks, but there are lots of discounts happening all the time and even free books. FREE BOOKS.
Any other sick peeps out there who haven’t yet tried reading books on your smartphone, totally give it a go! It’s weird at first but I find that being able to hold a small, light device in one hand instead of an actual book (I have real trouble holding books open when I’m super tired and achey) makes so much difference, as does being able to read in a completely dark room on a dim low-contrast screen cause I seem to be really light-sensitive these days.
The other thing I’ve been trying over the last little while is being a bit more open about my condition in my every day life. I was never secretive about it or anything, but I did have a tendency to say I was fine when I wasn’t and struggle to accept invitations even though it was incredibly difficult. I don’t mean I’ve started inflicting my medical history on everyone who invites me to a party (cause that would be horrendous) but I have started saying “I’m not doing so well at the moment” when asked sincerely how I am, instead of saying “I’m ok” while struggling to sit up and hold the phone to my ear.
Instead of panicking about looking flakey and not knowing whether to accept or decline invitations, I’ve started saying “I don’t know if I can make it cause I’m having difficulty getting out and about at the moment, but I would love to be there and I’ll let you know closer to the time if I can come along”. To my utter surprise, people have been cool with this and haven’t actually stopped talking to me or decided that I’m an awful person for not being ok all the time. Who knew? (Maybe every sensible person in the world, actually, just not me).
Recently, a friend suggested I come along to her martial arts class cause she thought I’d enjoy it. I had an insta-panic about how to handle that, took a deep breath and said “I’m not able to do things like that cause it’s a bit much physically, but it sounds really fun. Tell me what it’s like” and we were able to have a chat about it without her feeling bad for bringing it up and without me feeling useless or like a negativity cannon.
I’m not saying I never feel crap for not being able to fun stuff that other people are doing or that I never have sad times when I miss out on something exciting, but I feel like I’ve taken a big step towards a place of acceptance. There will be better times and worse times and long drawn-out boring nothing-happening-cause-it-can’t times, but I’m pretty sure I can handle it.
Extra snuggly hugs to anyone else out there who is going through a crashy time right now <3