Title has nothing to do with anything other than my love for penguins.
My sleep is still all over the place, but I’m mostly in hypersomnia mode. Having long naps on top of long sleeps. This is good as it is what my body needs to do to get over the relapse- every sleep is another step towards being just that bit better.
I am frustrated as pain levels are still higher than normal so I’m still taking double tramadol. The double tramadol is working fine so I should be happy about that, but it’s just a reminder that I’m still doing worse than I was a few weeks ago. Also when I take two tramadol I feel all woozy and dopey and sleepy, which doesn’t happen when I only have one, so there is that to think about as well. My current pain levels though require it.
Johan is regularly brushing my hair for me. This is nice and good- something simple that makes my life more pleasant and also lets me be close to him. It’s also letting me practice sitting up unsupported- my back muscles are very weak so sitting on the bed with Johan behind me is a safe way for me to do so without worrying I’m going to collapse and hurt myself. Luckily I’ve not even come close yet 🙂
Yesterday I managed my computer for a bit (probably too long) and went into World of Warcraft and did all the orphan quests on Danni. I now have all the pets (including the new ones from last year) and some pet biscuits from the Northrend one 🙂 If I get the chance I’d like to do them on Tiarna as well (which will be quicker as she’s a Mage) but it’s not essential. I also did our monthly budget for May so I know where we stand money-wise. Things are a little tighter than I’d like this month (a few one-off things that are coming out) but we still have enough slack in the budget for anything I’ve forgotten or any emergencies and stuff- which is good as I have a feeling the World of Warcraft subscriptions may be coming out. I will have to check now 😛
Just checked my account- mine is coming out 22nd May and I think Johan’s is only a couple of weeks after, so I will need to add them to the budget. Not a problem though as I can afford them, but I won’t be buying the Collector’s Edition of Diablo 3. That is a shame, but I’m getting it for free with the WoW Annual Pass so it will only be the extras I’ll miss out on (I can technically still afford it but I’d rather keep the money for emergencies).
Also yesterday I bought a new pair of trousers. Since I lost loads of weight the only trousers I’ve been wearing are leggings (and a pair of too-short tracksuit bottoms inside), and the ones in my size that I’d bought by mistake ages ago are too scratchy for me to wear now (touch sensitivity is worse with the M.E so I can’t tolerate many textures, including jeans). The new trousers are a linen/cotton blend, which I normally tolerate rather well, and are purple 😀 They’re in the long size which is important as I have silly long legs (36″ inside leg when standing) and trousers appear even shorter when sitting down. I may show some sock but that’s okay as I have some really cool ones- rainbow ones or purple ones or penguin ones 😀 It will be nice to wear a pair of trousers again, as although I love my leggings and skirts sometimes I want to wear something different.
Apart from that I’ve mostly just been on the internet. A little bit of Twitter, catching up on blog posts in my reader, and in a bit I’m going to read more of the Blogging Against Disablism Day posts. I’ve also had lots of cuddles and handholds with Johan (I can cuddle a bit again! Yay!) which is really nice.
As I spend so much time lying down, I do a lot of thinking. Some of this isn’t important, some of it is stuff like ideas for future blog posts (I have lots of ideas, just not the spoons to write them yet as they need a bit of research), and some of it is reflecting on things I read. For Blogging Against Disablism Day Ballastexistenz wrote two blog posts about caregiver abuse, which made me think a lot. I’ve been lucky to only be on the receiving end of the milder types of abuse (mostly neglect and refusal to take my wants and needs into consideration) though obviously that’s bad enough. The main thing I’ve been thinking about though was about the power imbalance between the carer and the person being cared for.
What is interesting is that I don’t feel there’s much of a imbalance in power between me and Johan. Yes, he’s physically a lot more capable than me and if he wanted he could use that against me, but when it comes to everyday life I feel equal to him. Some of this is because I do as much as I can- I manage most of the finances (Johan discusses them with me, and we come to decisions together most of the time, but the money goes into my account and I sort out where it’s going each month), I normally do most of the shopping order, and I keep track of what needs to be done and when. The other reason is that I know that Johan won’t ever deliberately harm me (I know he’s capable of it, but I also know he’d never forgive himself if he were too- he’s terrified of hurting me and I have to reassure him he won’t a lot of the time) so I feel safe with him. This means that it’s easier to accept him doing things for me, including very personal tasks involving washing and stuff. He always takes what I want into consideration, and I also care for him while he cares for me, in that I help him with the things he struggles with and try and help him with his mental health. I’d love to be able to do more, but with my M.E this bad that’s not possible at the moment. We also both spend about half the day telling and showing each other how much we love each other, which is always a plus 🙂
I think that’s one of the advantages of both of us being autistic. We’re very open and honest with each other, and we’ll talk about things (even if Johan does have to remind me not to talk too long as it makes me ill). If anything were to bother me with how he’s looking after me (or anything else, for that matter) I can and do talk to him about it, and if he’s able to change things he will. It’s the same for him- he’ll tell me if I’m doing something that bothers him, and if I can I’ll try and change it so it doesn’t anymore 🙂 I also have friends I can talk to if I ever want to talk to someone else about things, and I’m trying to encourage Johan to find his own support to help him cope with things (probably with the Carer’s Association, as it’s close by now). We both acknowledge that we need time alone sometimes, and even if it can’t happen physically then we can manage it by being in separate rooms and doing different things. As Johan respects my needs, I try to respect his as well. It’s also why respite and breaks are so important- it gives Johan a chance to charge his batteries, and it can help me as well.
I want to go to Edinburgh on holiday this year. Johan is also happy with this idea, so long as I’m well enough (I’m not currently, but I’m hopeful I will be in a few months). It’s harder to do a cheap break away now that I can’t walk at all so everything needs to be wheelchair accessible and things, but I’m very good at finding cheap train fares and cheap places to stay (I normally find Johan’s, and my siblings tend to come to me as well) so I’m sure we can manage it even on a tight budget. The main reason I want to go to Edinburgh is the penguins- there are so many at the zoo and it’s perfect for Danni’s. I also want Johan to do something he enjoys while we are there- not sure exactly what but I’m sure he’ll be able to find something (there’s a really cool museum we went to last time that may be good to go to again if I’m well enough). If I’m not well enough for it this year then there’s always next year.
The other places I want to go are London to the Mad Up in June (although that’s not looking very likely at this stage for me, Johan might be able to make it again though) and Leeds to see Johan’s family. I’m sure someone will look at this and think that we get far too much in disability benefits, yet most of it is because of money management and the fact we live very cheaply. Neither of us drink most than very occasionally, neither of us smoke, when I am well enough to go out we tend to go to rather cheap places and the only nights out Johan does are Barcraft, which since he doesn’t drink much works out very cheaply. I’ve said before that I feel rich on the amount of money we get in, though when compared to what we’d get if both of us were working it’s not very much at all.
Of course being stuck in bed most of the time means that now I have most of the equipment and things I need there’s less for me to spend my DLA on (other than the things like extra heating and a higher food bill as what I’m able to eat is changeable), but as soon as I become more mobile the costs will go back up again. If someone could cure my M.E tomorrow I’d grab it with both hands, and happy look for a job as there’s nothing I want more than to be able to work. It’s frustrating as I saw the perfect job for me advertised- working from home data entry, around 40 hours a week. Pay was a little more than minimum wage. And I’m not well enough to do it- if there was even the slimmest possibility that I could have managed it I would have applied immediately, but I’m just too ill. I don’t want to be on benefits but I’m grateful they’re there.
Since I’ve upset myself now thinking about all the scrounger rhetoric and stuff (I really need to stop internalising it) I think I’ll go watch some penguin cam – that always cheers me up 🙂