Category: Physical Disability

Danni

Random Post about Energy

Danni, M.E., Physical Disability

I am meant to be sleeping, but instead my brain is going over lots of lots of different topics (also, my night time meds haven’t kicked in fully yet as I took them late).

One of the main symptoms of M.E. is fatigue, tiredness, lack of energy. All those words don’t really describe what it’s like, but it’s late and I can’t think of better ones. Anyway, I have been overdoing it the last few weeks. Not just in the “one event so I crash” way, but also by doing too much on a daily basis so slowly my symptoms and illness get worse.

The main culprits are sitting up and playing World of Warcraft. And that sucks.

I really enjoy playing World of Warcraft. It’s a game I started playing before I got ill, and that shows because I’m still able to play it to an adequate level, even though I’m pretty ill and struggle to learn anything new. It does take a lot of mental energy though, especially for dungeons or raids, both of which I’ve done in the past week. I enjoyed them- they were a lot of fun. But it’s also made me mentally exhausted, which means that I’m finding it hard to find the right words (especially for verbal speech), remember stuff, and to concentrate on anything. I really don’t want to give it up, but I do need to cut out the dungeoning and raiding, which are some of my favourite parts, as it’s when I get to play with my friends. My other problem with it is I spend too long at a time playing it, which also makes me worse.

Sitting up is a difficult one. I feel a lot worse sitting up than I do lying down (or even in a propped up position in bed). I get dizzy, feel more nauseous, my back and neck really ache, and it’s painful. It’s also the only way I can do anything constructive. Sitting up in my wheelchair lets me go outside. Sitting up at my computer lets me play games, which are an awesome distraction (as my laptop can’t handle them). I’m not yet too ill to do either of those things in moderation, the problem is I do them too much, then I get more ill. I’ve been trying to ignore as many of them as I can (only way I can cope) but some of them are difficult to ignore. Like spasms that mean I can’t use my hands, or the inability to move my arms or legs, or choking every time I try to drink water. The pain, the nausea, the weakness, the dizziness I can normally block out for a while (had a ton of practice of blocking out bad feelings as a kid) but those ones I can’t.

Trying to figure out where I am in terms of the severity of my M.E. is hard, especially because with the blocking stuff. I can’t walk. I can stand for a few seconds, sometimes. I’m in agonising pain all the time, but at the same time I’m able to deal with it, at least temporarily. Oh, and I have to spend most of the day in bed, or I crash. So that would mean severe, yes? Except I’m not completely bedbound, and not always housebound. I can go out whenever I’m well enough to sit up, even if the very act of doing so makes me worse. And I even made it into college a few days this month, even if that has made me worse overall and I’m now doubting my ability to even complete the course at home. In the next week I have two days of going out: a doctors appointment on Tuesday morning, and on Thursday I have the CFS clinic in the morning and a hospital appointment in the afternoon. I’ll be able to attend all those things, so I must not be more than moderately affected. But then I can’t hold a toothbrush for long enough to brush my teeth, and I can’t lift my arms high enough to dress myself or wash my own hair. It’s so difficult to judge.

I know there are a lot of people with M.E. who are a lot worse than I am. I don’t want anyone to feel sorry for me- I know things can be a lot worse. At the same time, I think I’ve been trying to kid myself that I’m a lot better than I really am, and that’s hard. I don’t want to admit how bad I am now. I’m so good at ignoring how I’m feeling that the only way I can really tell most of the time is if I make a conscious effort to find out. And then I don’t like what I see.

I know I need to rest more, but I don’t know how to rest. Even when I’m trying to rest, my brain becomes hyper aware of everything going on around me, and I actually even less rested afterwards than if I spend the time reading Twitter. That’s something I’ll speak to the CFS clinic about on Thursday.

Danni

Am I Well Enough For College?

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

So, this last week I have been at college.

Correction: I was at college on Monday, too ill to go in on Tuesday (and lost the ability to speak for much of the day), in on Thursday, then my limbs stopped working just before I got into my flat, which required Johan to lift me up the stairs then drag me into the flat, lift me onto my wheelchair then get me into bed, while I couldn’t move my arms or legs.

Luckily it was only an hour or two before I could move my arms again, and a few more hours before I could move my legs, but it made life very difficult while I couldn’t move them. For the first time, Johan had to wipe my bottom after I’d been to the toilet, which was something I was hoping he’d never have to do.

Since then, I’ve stayed pretty ill, though I did get my bath on Friday, and was able to sit up for a couple of hours on my computer. I know this is more functioning than a lot of people with severe ME, but still, this is worrying if I want to be able to continue at college, as my body is really protesting it.

I can’t rest at college as I can’t lie down.

Sitting up is now classified as high energy. It makes me feel really ill, and get a lot of unpleasant symptoms, really quickly. To do college, I have to manage it for 2 hours travelling each way, on top of my time at college. It’s often more than 6 hours in a day.

It’s too much.

So, what to do.

I could continue being stubborn, and keep going into college. Either I’ll stay as I am at the moment, or I’ll get worse. Worse means not being able to get out of bed at all, more instances of not being able to move limbs, more losing speech, and maybe new things that I’ve not experienced yet. That’s on top of the tiredness and pain getting a lot worse. I’m already struggling to cope with it, though I’m able to try and deal with it using positivity and plenty of painkillers.

I could give up college. That would mean never being able to finish A Level Computing, as South Tyneside College has discontinued it, and no other college in the area does it. I’m good at it.

Of course, getting the A Level isn’t necessary to go to uni or get a job. I can get there through other methods. It helps a lot though, and it fits my style of learning.

I’m not going to decide now. I’m going to give it another week, talk to my Computing lecturer, and see how things go. I’ll report back next Friday.

Danni

Yeah, About That M.E. Thing…

Danni, M.E., Physical Disability

Dear Danni,

Please remember that you are ill. Specifically, don’t spend hours and hours on high activity things like sitting up when you should be resting in preparation for college, otherwise you will spend the next <insert time scale here> in bed, in a lot of pain after painkillers, trying not to be sick and so dizzy you feel like you’re on a rollercoaster. It’s not pleasant.

Yours sincerely,

Your Body.

Danni

Project 365: Day 62: 18th August 2011 – Results

College, Computing, Danni, M.E., Physical Disability, Project 365

Results

I think I’m allowed to be happy with them 🙂

Long day. Picked up results at about 8.40am, which meant I left at silly o’clock. My appointment at the CFS clinic was at 11.30am, so we decided to go into Gateshead. On the way to the Metro station one of my footrests fell off. I was able to hold it in place with my foot until we bought some duct tape in Gateshead, where we bodged it back together.

Went around the shops until my appointment. Didn’t buy much, just shampoo, conditioner, duct tape and chicken Bovril (it’s for a recipe).

Went to my appointment, and it went well. They agreed that my mental health problems/autism are not my main issue (though they’re contributing), and there was a definite onset of new symptoms following the bout of Swine flu I had in August 2009. They have offered me Graded Activity Therapy, which looks good. Combines pacing and activity with the aim of gradual improvements. They’re also going to contact my social worker over me getting a walking frame, as I need something more steady if I’m going to be starting to walk again. I also have colour charts and activity diaries to fill in.

Went to the MetroCentre after the appointment, which was okay, but stayed out too long. Spent all day since then in or on my bed, alternating between resting and messing around on the laptop. Johan has also spent the time feeding me and taking me to the toilet.

Danni

Project 365: Day 34: 21st July 2011 – Stripy Socks

Danni, M.E., Physical Disability, Project 365, World of Warcraft

Stripy Socks

Didn’t sleep much last night, as in too much pain (toothache on top of normal pain in arms and legs) and wasn’t well enough to go across the room to find painkillers.

Had to be up early this morning because I had my appointment at the CFS clinic. Threw up on the bus (I was prepared with bags, luckily) and felt really rotten travelling, but wasn’t too bad when I got there. They wanted to go through all my history, and there’s a lot of it, so I have another appointment in a month.

The photo was taken on the way back- the man sitting near us was wearing a shirt, tie and smart trousers, with colourful stripy socks 😀 It was good.

Went to the MetroCentre on the way back, heading to Asda. Found (and bought) a new penguin!It’s one of the ones from Madagascar. In Asda bought a new pair of wellys (they’re a size 9! and purple! and girly!) and a new dress that should be long enough to wear by itself 😛 Also got a salad, cherries and shortbread, but was feeling really ill by this point so we paid and went home.

Went for a nap when we got back, as I was knackered and in agony. Woke up and took painkillers, then had a bath. Also cancelled carers as I was in too much pain to deal with the one I don’t like.

After my bath, lay on my bed for a bit, then went on my computer to do dailies. Completed the Filling the Moonwell part of the Hyjal dailies, and did an epic storyline to kill Leyara 😀 Also was sad after doing the locket quests 🙁

Still in a lot of pain after full dose of painkillers. I need to make an appointment with the dentist (though I’m waiting to have the tooth removed) and see the doctor about the nausea and vomiting as it’s getting a bit difficult to cope with now.