There are lots of things that I want to do that my M.E prevents me from doing. I had to give up college (after getting an A the year before). Walking hasn’t happened for a long time. I want to go see Johan’s family in Yorkshire but I’m no way well enough to go that far. Going to see a film, or a play, or a comedian are all too much. The bigger things I can get over, but the littler things, they’re harder.
I really want to wash my hands in a sink. The last time I managed it was when I was in a disabled toilet, so probably August. I can’t get to the one in my bathroom. I’ve been using baby wipes, and although they’re okay in the short term I want to use soap, hot water and a towel.
I want to use a proper toilet. I can’t use ours as I fall off. Even using the commode is dangerous as I faint if I sit up too long, but it’s preferable to the alternative, which is using a bed pan. Using a toilet with a flush that doesn’t need cleaning as often would be wonderful.
I want a bath, or a shower. Baths are wonderful, they are relaxing and they are great for pain relief without drugs. I like adding bubbles. The last time I had a bath was January or February. We don’t have a bath in our new flat, but I can’t use the shower at the moment as we don’t have a shower seat. We tried using the bath lift instead but it didn’t work that great and is too dangerous to repeat. That was a few months ago and was the last time I was able to have more than a wash in bed.
I want to go out. Before the last relapse I was managing to go out once a week, to the library or into Newcastle to look around the shops. I went on the bus and the Metro and it was awesome. I got to see the bridges over the Tyne, could people watch, and eat out. It was awesome. I’ve not been well enough since then, which was in August.
I want to wear jeans. Jeans go with pretty much everything, and they look good. I can wear trainers or high heels and they go. And the texture of them is completely unbearable, and the pockets and sticky out bits dig in when sitting in my wheelchair.
I want to see my friends. I’m too ill to go out to see them, and I’m also too ill to have them visit most of the time. Even when I’m well enough, most of them are too far away. In the last few months, the only people I’ve seen are Johan, my carers and my doctors.
I want to be able to watch TV shows again. I have loads of telly shows I like- Doctor Who, NCIS, House, Glee, Law and Order SVU. I’m behind on all of them, some of them now by two seasons, as I’m just not well enough to watch them. I can’t follow plots and I get very confuzzled. I can watch My Little Pony: Friendship is Magic, but that is with difficulty and I need to rest to recover afterwards.
I want to be able to go into the kitchen and choose something to eat for dinner. To go into the kitchen, I need to be well enough to get into my wheelchair, and Johan has to push me. That could be doable, but then I can’t see into the cupboards or the fridge or freezer because they’re too high or too low or I’m too reclined. The room isn’t really designed for a wheelchair user, and so I have to rely on Johan to tell me what we’ve got in to decide what to eat.
I want to be able to sit upright without fainting. That would mean so much to me. It would mean I could use a normal wheelchair, instead of needing a tilt in space one. Getting into the kitchen and looking for food would be at least partially doable. I’d probably be able to manage using the normal toilet. I might even be able to wash somewhere that isn’t my bed, like the bathroom. I could manage with a normal shower seat. I could probably even get dressed without lying down, which would make it a lot easier.
I want to have a day without any nausea. Asking for a day without pain is far too much, but having an entire day without nausea would mean I’d be able to eat better, and would be able to cope with everything more. I do have anti nausea tablets that work, but they also put me to sleep so I’m reluctant to take them when I can just about manage without.
I want to be able to have cereal with milk and eat it by myself. That would mean sitting up to eat it (I mostly eat in bed, propped up a little bit, because if I sit up even in my tilted and reclined wheelchair and try and chew at the same time it’s too much), being able to hold and use a spoon, and not spilling it everywhere. Though I can sometimes manage using a lightweight plastic spoon or fork for a few mouthfuls, my hand then starts spasming so I need Johan to help me finish. With cereal there’s so much to go wrong that I just eat it dry with my fingers, but it would be nice to manage it properly some time.
I want to be able to take my medication by myself. At the moment Johan has to sort out and give me my medication. Due to the severity of my cognitive issues, it’s dangerous for me to manage it myself as I’d forget if I’ve taken it and might take too much (and since most of the time I have no idea what time it is even putting it in a box wouldn’t help). I struggle to hold the tablets or capsules and can only sometimes manage putting them in my mouth if Johan’s passed them to me. Other times he has to put them in my mouth for me because my hands are being too stupid or my vision is too blurred and I can’t figure out where my mouth is. Then I need help with the cup as it’s heavy. As for the liquid medication, there’s no way I’d be able to manage measuring and pouring it out safely.
I want a hot drink. A cup of tea or a hot chocolate would be lovely. Hot drinks are dangerous though- there’s a high risk of scalds. I do have a thermos I could try drinking from, but then the other problem is that Johan doesn’t feel able to make a hot chocolate or a cup of tea, so it just doesn’t happen. If I could get out then I’d be able to have one at a café or somewhere (like the one in the library).
As Johan pointed out when I told him what I was blogging about, most of these are big things to me as I can’t do them. To those without severe illness or disability though, these are quite small things. There are other things I could have added, like moving independently around the flat, and getting dressed by myself, but this list will do.
Some of these I may be able to do in the future. I’m hoping the OT will provide me with a suitable shower seat so that having a shower will be doable. I’m having an assessment for a power chair, and depending on how it works I might be able to go into the kitchen and even choose food. If my hands improve further then maybe I’ll get that bowl of cereal. I’m very grateful for all I am able to do- get out of bed occasionally, go on my computer, speak or type, get dressed some days, use my tablet to go on Twitter and communicate with the world. But sometimes it’s hard not to want to be able to do more.