Category: Physical Disability

Danni

On NaBloPoMo, M.E. and Generic Stuff

Danni, M.E., NaBloPoMo, Physical Disability, Real Life

Yesterday’s post was important, as not only was it the first day of NaBloPoMo but it was Autistics Speaking Day, so I got to talk about how autism affects me. Lots of people read it, and some even commented, so thank you very much.

Today I wanted to blog about M.E., sorta the same post as yesterday only relating to how M.E. affects me. Unfortunately, I’m too ill to do that today, so it’s been postponed until I’m feeling better. Even though my computer is now very close to my bed, I’m not well enough to go on it again today, and shouldn’t have earlier as I’ve made myself worse. Silly Danni.

I have mostly sorted out my sleeping pattern. Kept pushing back my bedtime, and last night it was 7pm. I then slept for 17 hours, but I think that was mostly because I’m more ill today- I’ve been overdoing the sitting up the last few days. My body has lovely ways to remind me that I’m ill, which includes massive amounts of pain that the tramadol is only slightly helping, double vision which is making typing this rather interesting, exhaustion that means even turning over in bed feels like too much effort, dizziness to the point where I feel like I’m on a boat when I’m just lying in bed, and increased light sensitivity which means I’ve had to ask Johan to turn the main light off.

All of those could be worse though- and have been. Although today is a bad day, it’s nowhere near a very bad day. Okay, it sucked not being able to have a bath as I can’t even get into the bathroom, and I can’t go on my proper computer, but I’m well enough to tolerate the light on my tablet with the brightness turned down to low, I can eat a bit so long as it’s finger food, I can type this and I can watch the lights on my colour changing candles.

Today I got my appointments through about getting my bad teeth removed. The pre-admission assessment is in about a fortnight, then the actual removal is in a month. I’m getting it done under a general anaesthetic as the sedation didn’t work earlier this year. I’m mostly worried about how I’m going to get there, so I’m going to see my GP (hopefully on a better day than today) to ask him what would be best. I also need to ask him if there’s anything I can take for the muscle spasms, as they were what caused my sleeping pattern to be so messed up when they kept me awake for about 10 hours after I was intending to sleep. I’m also a bit frightened of hurting myself when they launch me off the bed. My legs are already covered in bruises, and I don’t exactly need to add to them.

I need to rest now, so will leave it there. I’ll be blogging again tomorrow, and every other day this month, so long as I’m conscious at least part of the day 🙂

Danni

Looking Out Of The Window

Danni, M.E., Physical Disability, Real Life

The update post!

November (tomorrow since it’s Monday already) is NaBloPoMo. I am planning on taking part this year, even if I only manage to post a video or a picture everyday. It should give me something to do 🙂

Blizzcon was awesome, though I did get payback from watching a lot of television (live stream). I’m very excited about Mists of Pandaland, can’t wait to be a Pandaman Monk and also will be buying the collector’s edition of Diablo 3. I’ve also subscribed to the annual pass for WoW as I should be continuing to play, and I pay every 6 months anyhow.

I’ve spent a lot of time in bed as normal. On Thursday I went to my hospital appointment, where I didn’t see my consultant 🙁 but did see a member of his team. She’s going to write to my GP I think, and doesn’t want me back until I improve, because going there made me very ill. She is happy with this because I have such a decent GP, and there’s not much they can do there that my GP can’t anyway. If I improve enough, I’ll be going back in about 3 months.

I have given up keeping the activity diary for a few days. It’s been pretty freeing, actually :p The doctor at the hospital wants Johan to call my physiotherapist about me not being well enough to travel to the CFS clinic, to see if they can see me at home or something. I haven’t been able to figure out baselines at all, though I do know roughly how much I can do on a good day and a bad day. The problem is on a bad day, I can do pretty much nothing, and spend most of the day with my eye mask and ear defenders on, maybe occasionally taking them off to stare at Twitter. I will work on it this week, as I’m meant to be seeing them on Thursday. I will also start filling in the activity diary again.

We’ve also rearranged the living room. We originally shoved the spare bed in the corner after I’d been sleeping on the sofa for a couple of weeks because I was unable to get upstairs, but I was hoping to improve so it was only meant to be a temporary solution. As it is, I’ve got worse instead of better, and acquired an awful lot of disability equipment that needs to be in here, so we’ve moved things about. We’ve removed one bookcase completely (did have Star Trek videos and DVDs on- I’m not well enough to watch them), put another behind the door, moved my bed where my computer desk was and that desk where my bed was, and moved the other computer desk around so there’s room at the bottom of the bed for stuff like the commode. I’ve also swapped computer desks with Johan, so his is near the door and mine is near my bed so I don’t have to crawl to get there anymore. We’ve still got the sofa to sort out (it’s been moved slightly for the computer desk, but otherwise is pretty much in the same place- but it’s been turned into the dumping ground for everything while we’re moving stuff) and I want my small bookcase from upstairs to put next to my bed as a table, but it’s getting there. I’ll take and post photos when we’re done, which should be tomorrow.

The main advantage of moving everything is that I’m no longer near the living room door, the wall next to the pub and above the gas pipe, so I should be disturbed a lot less. It used to be when I was asleep that I was the first thing you’d see coming into the living room, so people mistook it for a bedroom :p Now if I’m not well, I’m in the corner so people coming in will disturb me less. Also not being on top of the gas pipe means not waking up to vibrations whenever a carer runs the hot water to do the dishes or similar :p I can also see out of the window, so I’ve been able to see some awesome sunsets.

My plan for today is to wake up and get up about 10am, to try and sort out my sleeping pattern. I’m guessing it will make me feel pretty rough for a bit, as I’ll be tired, but trying to go to sleep earlier hasn’t worked yet, so I’m going to try waking up earlier instead. Johan doesn’t think it’ll work but we’ll see. Johan needs to call the physiotherapist about Thursday, and it’s Halloween so I’ll be asking him to see if he can find some face paints (I want to be a zombie :p) and we’ll be carving the pumpkin I bought last week. I’m also thinking of asking him to find some halloween treats in the shops, and maybe try watching a scary film I’ve seen before (though that may be a bit optimistic).

We also both need to make GP appointments, but that’s not overly urgent. I want to see if there’s anything he can suggest for the muscle spasms, as them keeping me awake is what made my sleeping pattern so bad to begin with. They’re also quite scary as if I’m lying on my back they can launch me off the bed. Johan and I think we may have to consider something to stop me ending up on the floor if that happens, though I don’t really want to feel like I’m in a cot. We’ll see.

Danni

Being Too Tired To Care

Danni, Important Stuff, M.E., Physical Disability, Real Life

(An update post is coming soon(tm).)

I used to have an interest in many different areas. Human rights, discrimination, politics, free software, and other stuff- things I used to try and keep up with and trying to help reduce world suck in whatever way I could. Recently, I’ve not been able to do this.

The last time I took a proper interest in something like this was when Troy Davis was executed. I stayed up all night praying and hoping for the best, then praying and being upset when the worst happened. It completely exhausted me, and made me more ill. Since then, I’ve had to be careful not to allow myself to get caught up in injustices in the world, as the emotional energy I would spend on it is too much for my body to handle. I’ve been feeling really guilty about this, as basically I’m too tired to care.

The hardest hit march was last week. I was hoping to go, but I was too ill to do so. I sent one message on Twitter, and did nothing else. Well, I read the Twitter messages about it, but I watched no videos, read no blogs I wouldn’t have anyway, didn’t contact my MP or similar. I wanted to do something for the day a month ago, but I was just too tired too really care about it on the day. And this was for something that could affect me directly in the near future, as I’m currently living on disability benefits.

For other areas, I’ve been doing even less. I’ve even been ignoring certain Twitter messages from friends, as I don’t really want to know what bad stuff is going on. Emotional stuff for me is probably more draining than any other type of activity (mental or physical) though is harder for others to see as I don’t show my emotions that well. My carers and Johan may yell at me for crawling across the living room, as it’s using too much energy and will make me worse, but they can’t see if I get upset that someone’s going to become homeless due to ATOS, or has been killed, yet that will make me worse than the crawling.

I admire those who are able to protest and do stuff, especially those who are also disabled. I wish I could join you, but right now I’m just too tired to care about any cause. 

Danni

Excited for Blizzcon

Danni, M.E., Physical Disability, Real Life, World of Warcraft

Had a rough time recently, but slowly coming out of it. The nausea is nowhere near as bad now, and I’m back to eating mostly normally. It was probably made worse by overdoing it (going to the MetroCentre then the doctors at the beginning of last week) and since I’ve not been out since then and resting and taking it easy, it’s started to behave.

I do have a cold, which is trying to make me feel miserable, but ibuprofen is taking care of that. On that subject, why does children’s Nurofen taste disgusting (it’s a horrible orange flavour) while Calpol tastes nice? I’d have Calpol instead but paracetamol gives me a horrendous headache. I also get the Nurofen on precription, which since I don’t pay for them makes it cheaper.

I can manage about 3 1 hour sessions on my computer without getting any extra symptoms or getting any payback. I think I’ve found my baseline for that activity, anyway 🙂 Now to work on all the others. I have found talking to my social worker is exhausting and gives payback, but that’s a necessary activity, unfortunately 🙁

I’m getting a bath lift! 😀 The occupational therapist came out today, and didn’t even need me to get out of bed :p He asked Johan some questions about me (even if he did add nearly a stone to my weight. Humph.) and has recommended a reclining bath lift. He said that normally they’d start with a bath seat, but since my main problem now is that I have very little upper body strength (or lower body strength) the bath lift is most suitable. I am looking forward to having baths again, without having to fall in and risk getting stuck. They’re awesome for pain relief, as well.

Blizzcon is on Friday and Saturday, and I have a virtual pass so I’m looking forward to watching that. I get access to the videos for a bit after they’ve been streamed, so if I miss something because I’m ill I can watch it when I’m able to. I want to see what the next expansion is for World of Warcraft, and the Foo Fighters are performing 🙂

I am starting to adapt to being this ill. It’s hard, but I’m learning to ask for things more so I can conserve my energy for more important things. I’m also asking Johan to heat up my wheat bag and penguin to try and ease the pain when it’s only in one limb, as heat does help and means needing to take less painkillers, which is always good.

We’ve had to turn the heating on. The last couple of days have been freezing. We turn it off a couple of hours before the pizza shop opens, and turn it back on again a couple of hours after it shuts. Luckily we can save money during the period the pizza shop provides our heat. I’ve also noticed I’m more sensitive to the cold this year- this is probably just because I’m a lot more ill. Still, my DLA is to cover disability related expenses and extra heating bills is one of them.

My doctor has sent off a letter to the council about moving to more suitable housing, I think. At least, he’s sent back the letter I gave him telling me I needed the doctor to write to them.

I’m also sorting out direct payments. Currently looking for someone to work as my personal assistant twice a day. Unfortunately I don’t know anyone immediately who can do it, but I’ve asked on Facebook and will also be advertising in the Job Centre and stuff. This is something that living so far out will probably make harder really though, as it’ll only be a few hours a week and unless the person lives in the area there will be quite a travel to get here. I’m hopeful though, and we can be relatively flexible regarding hours if a college or university student wants to do it. The paperwork currently looks like a nightmare, but I think that’s just because I’ve been so ill the last week or two. It will probably be less scary when I look at it when my brain is partially functioning.

Long blogpost has turned out long. Johan is amazingly still awake- I think he’s getting ready for Blizzcon. Lovely Icelandic carer is due in about 6 hours. That will be interesting if we’ve both not really slept (I’m currently sleeping for about 9 hours in two blocks of between 4-5 hours each, one in the morning and one in the afternoon/evening). Still, I’m not too concerned about it as I am sleeping enough, and if it becomes too troublesome I may ask for a very short course of sleeping tablets just to reset it.

Danni

Staying Positive

Danni, M.E., Mental Health, Physical Disability, Real Life

At the moment, I am a generally positive person. This may not come across much in my blog posts, mostly because I’m using them to record how my M.E. is treating me, and at the moment it’s making me rather ill. I have been talking to friends, and one said she felt guilty as she’s improving while I’ve been getting worse. The last thing I want is to make people feel guilty about getting better, just because I’m not. So here’s a list of the positive things in my life at the moment.

  • I’ve not been depressed since early 2010. This is the big one- although I do get periods of low mood, and other negative emotions such as anger and things, they are always within the bounds of normal (whatever normal is) and I can normally cheer myself up. Also, if I’m having a particularly bad day, painkillers normally fix it as it’s normally caused by pain.

  • Despite being very ill, I’m not completely bedbound. Most days I can get out of bed, even if it’s just to use the commode or spend 10 minutes on my computer at the other side of the room. It’s only on very bad days when I can’t manage getting out of bed at all, and faint if I try and use the commode.

  • It’s rare for me to be completely bored. My main past time is just reading Twitter (I respond when I can, but I’m not always well enough for that). It takes very little energy and concentration, as it doesn’t matter too much if I miss or forget a tweet. If I can’t do that, then I’ll look at the penguin pictures on the wall, and when I’m at my worst and wearing eye mask and ear defenders, my imagination can normally keep me entertained.

  • I can take pleasure in other people’s achievements. I may not be doing much myself, but I am genuinely happy to hear about other people doing well, whether they have M.E. and improve a bit, or passing exams, or just doing something cool. Hearing about that sort of thing makes my day a lot brighter.

  • I have a lot of friends, who accept me for who I am. Okay, so most of them are online, and I’m terrible at keeping in touch with them, but when I am well enough to do so, they help make me feel good about myself.

  • I have a really good medical team. My GP is excellent- understands M.E., treats me well, and is willing to do whatever he can to help me. My consultant is also good, and wanted to make sure that there was nothing treatable causing my symptoms. The CFS clinic are doing graded activity therapy, not CBT and graded exercise therapy which would probably make me worse. They also take into account my autism when working with me (so I may not get enough proper rest, as I don’t find it restful, but they understand that I do find my Twitter reading as low enough activity to count as rest).

  • I have an amazing, supportive husband, who cares for me very well. He may be going through a bad time at the moment, but I’m still getting fed, have enough to drink, and get to the toilet when I’m well enough. He also empties the commode and my sick bucket when it needs it.

  • I have the most beautiful daughter in the universe. Enough said.

  • I have painkillers that actually help. I’m lucky that I don’t suffer from nerve pain (which is difficult to treat) and only have muscle and joint pain, as well as some headaches and a sore throat. The worst of my pain responds to tramadol, which while it doesn’t get rid of it completely, does make it bearable so I can concentrate on other things.

  • I don’t have insomnia. I may have sleep reversal at the moment, but when I am sleepy, it doesn’t take that long for me to drop off. I was surprised at how quickly I got back to sleeping naturally after coming off quetiapine, but I’m very grateful for it.

  • I’m not having any financial problems. I get all the benefits I’m entitled to, and one of the advantages of being nearly completely housebound is I don’t have that much to spend it on :p I buy the disability equipment I need when I need it, and also have enough left over for the odd book, or for some small treats such as bath things or chocolate. When I am well enough, I have enough money to go out, and can save a little bit so hopefully we’ll be able to go on holiday soon.

There are probably other important things that I’ve forgotten, but overall I am enjoying life, even if it’s not exactly what I want it to be.