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

Purple is the Best Colour

Danni

I did type out a long blog post, but it was in an app rather than on the website, and I lost it all when it crashed. Won’t be doing that again.

So, I sorta stopped doing Project 365. I kept forgetting to take photos, forgetting to upload them when I had, and I was running out of things to take photos of in my living room. Maybe I’ll start it up again when my health improves and I’m going out more.

I’ve been a bit busy the last couple of weeks. Medical appointments, deliveries of new wheelchair and assorted other stuff, covering my wheelchair cushions in purple fleece, enrolling and then starting at college, and other such things. I also bought Eee Pad Transformers for Johan and me. It’s awesome, apart from the WordPress app losing my blog post when I tried to add a photo :p

I’m hoping to get back into daily or near-daily blogging again, if only to keep track of my M.E. symptoms. I’m still filling in the activity diary, and I have an appointment at the CFS clinic in about 3 weeks to go over it and see if they can help me with activity management. Luckily I’ve not been too bad recently- my muscle spasms have been small and short-lived, mostly in my hands, the pain has been manageable, and most days I’ve had the energy to get out of bed, even if only for a short while.