Yesterday I woke up in the morning not feeling great, so when lovely carer came around we just chatted as I didn’t feel up to being touched. I sent Johan out around lunchtime to go and try and sort his bus pass out (he has an extra ticket on his Key) and then told him to go to Nandos, as he wanted chicken and I like treating him. While he was in Nandos waiting for food we were talking on Google Talk, and then without warning I fell asleep. (Johan also claims he wasted all the rest of the money on razor blades, but since that’s a necessity as I demand he shaves it’s not wasting money at all )
I woke up again after midnight, and I’ve been feeling much better since (for me, that is). That sleep may have been unexpected, but it seems to have helped a lot. Going to the prom on Wednesday seems more possible now.
Tomorrow (Monday) is my 26th birthday. I feel weird about it. AYME only support those up to age 25, as after then you’re no longer considered a young person. The friends I’ve made on the forums have been amazing, and helped me so much with coping with this illness. I don’t agree with their stance on a lot of things, but they are very good for helping members get in touch with each other. Luckily I know most of my best friends from there on Facebook and Twitter (from before they banned the sharing of that information) so that helps as I can keep talking to them
I’ll be joining AYME Graduates as soon as I can get a postal order sent off (WTB a way to pay online ) and have already received a birthday card from the Graduates SAMs team (SAMs= Severely Affected Members). That made me smile
For my birthday itself I’m just going to have a friend come around, as dealing with a lot of people will set me back and would mean that I won’t be able to go to the Prom. I want to decorate my bedroom and think if I get some non-birthday specific decorations then I can keep them up to make my room look pretty after my birthday as well
Johan and lovely carer helped sort out part of my bedroom for me when Johan said they would. This has made my room look better, means I know where more stuff is and as I’ve got penguins on the top shelf of the unit opposite my bed they make me smile every time I see them There’s still some tidying and sorting to do in here but it can be done in little bits and pieces so that will be good. The bit they’ve already done means there’s more room for Johan to get around the bed when needed without needing to climb over it, and my wheelchair has its own spot.
I got a £10 Amazon voucher from filling in surveys last year, and used it to part pay for a purple snuggie (blanket with sleeves thing). It meant I only paid £5 and it’s awesome. I’m using it in bed for when I’m on my laptop to keep my arms warm, and think it will work well in my wheelchair as well
I’ve been going on Facebook more often now I use my laptop more (yay overbed table!), mostly to play Bejeweled (I like that game) but also reading people’s statuses. I have to remind myself that most people with ME can do more than I can (I remember that there are people who can do less than I can all the time) but it still upsets me when people post about getting a job or similar with a message like “if you really want it, you can do it”. I really wish that was true as I really wanted to finish my A Level in Computing. I’m just too ill though, and trying to push through it (as those posts suggest doing a lot of the time) is why I’m so ill now.
That’s not to say that people without severe M.E. aren’t ill or anything- I understand that in many ways it can be just as problematic, just the challenges are different. I guess what is happening is I automatically think people with M.E. are at my level or lower, and I need to remind myself that actually I’m pretty severe and that most people aren’t quite as ill as I am with it. (I also have a tendency to think I’m not as ill as I am, because I go out sometimes and mostly tolerate light and stuff, ignoring that I can’t wash or dress myself, or sit up straight, and am in a lot of pain even after painkillers and struggle with everything.)
I know that going to the prom on Wednesday is going to set me back, but I’ve been resting lots, will prepare well (going to take my eye mask, ear defenders, sunglasses to cope with sensory stuff, lie back in my wheelchair so I’m not too upright, and go out of the room as I need to for rests) and luckily most of the people there know me so it should be okay. I’m also going to rest loads afterwards to try and lessen the impact. I do know that someone I follow on Facebook who is a bit more severely affected than me (especially for sensory stuff) is planning on going to the Olympics, so me going to the prom is no more insane than that
I’m going to get there. I’m building up slowly, though stopped doing as much to rest for the prom, but once I’ve recovered from that I’ll work on getting back up. I could be worse