Category: Physical Disability

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 Danní 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.