New Year Resolutions

Today is New Year’s Eve, so I thought it was a good idea to make some resolutions for the new year.

  1. Be kind to myself.
    This is a hard one, but I’m getting much better at it than I was. It includes trying to limit stuff that causes me pain, both physically and mentally. The hardest part is ignoring some of the criticism from people I respect, as with the way my brain works it turns into a big hideous monster and spawns self loathing.
  2. Be more aware of my limitations, and stop overdoing it so much.
    Having M.E. means I don’t get the luxury of being able to do everything I want (or need, in some cases). Since having that bad cold in November, my functioning level has decreased quite a bit, so I’m struggling with things that I previously didn’t have problems with, such as chatting online and playing WoW (/cry). It took a little bit for it to sink in though that I couldn’t do as much as I could in October. It will mean I have to assess whether something is worth the energy expenditure before I do things, and I’ll have to decline more social invites and such, but my health is more important.
  3. If something is medically wrong, seek help sooner, rather than 6 months down the line.
    Yeah. This doesn’t mean I go see the doctor whenever I have a cold (if I have a bad cold, then getting to the doctors probably isn’t possible anyway) but if anything unusual happens, like (using examples from the past here) new severe pain that I don’t know the cause of, parts of my body suddenly become paralysed, or I take far longer than normal to recover from something, then I should go see someone. I’ve caused myself enough suffering because I have been reluctant to see the doctor, and it’s about time I stopped.

I think that’ll do. If I think of more, and they’re actually achievable, I may add to them later.

Earlier I was looking through my old blog for this time last year (to see if I’d posted any resolutions- I couldn’t find any). It’s strange reading back those blog posts- they feel like they’re written by someone completely different. Although I know that I wrote them, I’m slightly scared that I was that ill, and in that much mental pain. Even though physically I’m worse than I was then (though I did already have M.E., and it was having an impact) mentally I’m much, much better. I still struggle with mental health problems, especially anxiety, panic attacks and phobias, but I wouldn’t class them as that severe now. The big thing is that I no longer experience suicidal thoughts- the closest I get is when I’m in extreme pain and think I’d rather be dead than have to deal with the pain, but it’s different, because I don’t actually want to be dead- I’m just not coping with the pain at that moment. Those thoughts only happen when I’m 10 on the Danni pain scale anyway.

The Danni pain scale- it’s a pain scale similar to the one used in hospitals, translated into Danni-ish so I can understand it.

0 is no pain at all (last experienced sometime in the 90s, I think).
1 is where I was before M.E. when I was on strong painkillers, like tramadol or morphine after a gallstone attack had finished but the painkillers were in my system.
2 is where I was when I took normal painkillers for the before M.E. aches and pains I had.
3 is a before M.E. good day.
4 a before M.E. normal day, with a bit of hip pain, maybe a mild headache caused by sensory stuff like lights or noise.
5 is moderate hip pain, or a bad headache.
6 is a before M.E. bad hip day, where walking would be really painful and difficult, and sometimes not possible for that long. 6 is also the level of pain I’m in now when I’m just lying in bed, without moving, on a good day. It’s also the level where paracetamol and ibuprofen start being a lot less effective (if they help at all).
7 is mild gallstone attack land, migraine land or sitting up on a good day with M.E. I’m here probably about 1/4 of the time these days.
8 is a moderate gallstone attack, where I’d had no choice but to lie down, and would also take tramadol once I’d been prescribed it. It’s also where I am normally (about half the time) these days, on a good day at college or similar.
9 is where I lose the ability to concentrate at all, as the pain is that bad. When I had a gallstone attack and tramadol wasn’t working for it, it was normally this level, and I’d need morphine to deal with it. This is a normal bad day now, and all I want to do is lie down. I also tend to get very hot and sweaty at this point.
10 is where the pain is so bad I just want to die. I can’t move at all, and I can’t sit up. It’s also the level I was at when I passed out with gallstone pain once. Luckily, I’ve only been here a couple of times since getting M.E., but I don’t want to be here again.

Right now I’m around an 8. My muscles and joints are very sore and achy, moving makes me wince slightly and I have a headache. That’s about normal.

I find it very hard to describe pain, and I’m also aware I don’t display pain very well. The main outward signs that I’m not coping with pain is that I’m very irritable and snappy, and/or I become very quiet and withdrawn. To make it harder, I try to hide the fact I’m not coping, and try to hide the irritability. There are lots of factors that affect my ability to cope with pain though, so if I’m otherwise calm and not doing anything, my tiredness isn’t too bad, and I have the opportunity to lie down if I need, I can cope up to an 9, but it’s rare that’s the case. 10 is so unbearable, the worst it can get, so I can’t cope with that at all. I don’t have much choice though, as I don’t have access to painkillers (other than alcohol) so just have to get through it. Trying to cope with the pain is exhausting, and makes my tiredness a lot worse.

In other news, Johan’s still ill. He’s not in pain any more, but he’s still exhausted and he says everything still tastes weird. He has been able to get upstairs to sleep though, so his mobility is still better than mine, even though he’s recovering from the flu (/grumble).

I’ve spent most of the last few days asleep, dozing or not moving much at all, even for me. Christmas took it out of me, and I’ve not had the concentration to do that much. I’ve played a bit of World of Warcraft, but not done as much as I’d hoped to have done by now. I did get DannΓ­ to level 85 though, so that’s a start.

Since I’ve managed to doze off in my computer chair writing this, I guess I’ll post it now and go and get some sleep, as I’ve turned completely nocturnal.

The End of NaBloPoMo

This is my 30th daily blog post for November, which means I’ve successfully completed NaBloPoMo. Some blog posts were pretty short, just a YouTube video and a few words, and others have been a bit longer. This month started with Autistics Speaking Day, and finished with me being housebound because of the snow. In between were lots of posts about college (especially missing it quite a lot because of illness and snow). I cut down my hours at college near the beginning of the month, sorted out a problem with support on a Wednesday, and overdid it a lot, meaning I was firmly in a boom and bust cycle of ME. I played a lot of World of Warcraft, was discharged from the mental health service, got sucked into TV Tropes for over a week, bought a new hoody (that has been worn more days than not), and spent most of the month in severe, chronic pain that my painkillers don’t come close to touching.

I also met a couple of the stars from one of my favourite shows from my childhood, caught (and mostly got over) a cold, took part in a big launch event for an online film, played Quasar Laser in my wheelchair, and rewatched season 1 of Dollhouse. My mood dipped a bit for a few days while I struggled to cope with a worsening in pain, but has mostly improved now, possibly with the enforced rest the snow has given me.

Overall, a rather mixed month. Today again I was stuck indoors due to the snow, but tomorrow is the Christmas meal and cinema trip with my tutor group, which I will be going to even if I need to get a taxi to go there. I will be attempting to go to college in the morning, but will need to see based on what the weather is, what the buses are doing and what the roads and pavements are like near here. We do have a plan that involves pulling my wheelchair backwards in the snow, as the bigger wheels should mean it works better.

I shall try to keep blogging daily, or near daily, but I won’t put myself under the pressure I did this month. At least there won’t be any more panicked blog posts just before midnight because I’d forgotten earlier in the day πŸ™‚

The Test That Was

Had my Computing test today. I didn’t answer everything πŸ™ I also think I got some of the answers wrong. I just hope I got a few marks. It was the only lesson I had today, as I’ve dropped Problem Solving and I couldn’t go to Enterprise as I had an appointment with my psychiatrist.

The appointment went fine. As expected, I’ve been discharged. I’m doing much better mentally, so that’s fine. She thought I’d hurt my leg because I arrived in a wheelchair (I waddled my way into the consulting room, as the doors are a bit narrow and I go in by myself). I explained it was ME, we talked about random stuff, and then agreed that I didn’t need to see her any more. I know how to access the services again if I need to, but for now I don’t.

On the way back, the first bus that arrived had a broken ramp. A man in a high-visibility jacket flagged down the bus trying to overtake, and reassured us that if that ramp didn’t work that he’d sort us out. The driver of the second bus (the ramp worked fine) joked that we always cause him trouble (we’ve had him as a driver a few times now). When we were leaving the bus, he asked us when we got all pally with the owner. Turns out the guy in the jacket was the owner of Go North East. I guess that helps explain why he was so helpful πŸ™‚

I’ve been sucked into TV Tropes website again, so blog posts will continue to be short until I figure a way out…

Dancing Robots

Title relates to today’s Computing lesson- at the start, Simin (our lecturer) showed us a dancing robot (ASIMO). I also discovered that she watched Lost in Space as a child, and she loves Data from Star Trek: The Next Generation. Geek win.

Otherwise in that lesson, I was there but didn’t really take much in. This is a problem, as I have a test on the processor, machine code and fetch-execute cycles tomorrow. I’m hoping to read the book and gain some understanding tomorrow, as today I couldn’t concentrate, and still feel rotten.

Interface afterwards did not go well. Too much muchness. I asked Johan to pick me up early as I couldn’t concentrate and was just totally fed up. At least I’d finished panicking when he’d arrived. I’ve done nothing since I got home, and I think I’m going to have an early night. I need it.

Whoopsie

I forgot to put my prescription in until Friday, and last night it wasn’t ready yet. I ran out of quetiapine on Sunday evening, which means I didn’t really sleep last night (I napped for a couple of hours, lay in bed for another few hours, then got up at 4.30am as I was bored of lying in bed). This morning I’m feeling nauseous, but slightly more energetic than normal (I can walk relatively well around the flat, though the stairs were still an issue). Today is going to be interesting at college, as when the meds from Sunday night completely wear off I’ll probably start experiencing all the troubling symptoms the quetiapine is meant to control.

The good news is I managed to watch the new episode of House before my alarm has gone off. It was good, and it’ll be interesting to see where the House/Cuddy relationship goes πŸ™‚