Okay Body, You Win

Since Monday, I have finally realised that yes, I am actually ill. This may seem silly, but even though I’d accepted that I had M.E. and that it was affecting me, I wasn’t accepting just how ill I was, so still trying to do things I really shouldn’t be doing. I’ve learnt my lesson.

On Monday, I went to college. I vomited on the bus on the way there, as sitting up for more than 10 minutes = bad idea, and motion on top = even worse idea. Turns out other bus passengers are either disgusted or concerned when someone is throwing up in front of them. When I got to college, I lay on cushions on the floor of the chill out room as I couldn’t do anything else, and did not make it to my lesson. It was the first time anyone at college had seen me that ill, though it’s been my normal level for the past month. I went home in a taxi about 2 hours later, and was vomiting in there, too.

Tuesday I had an appointment at hospital about my teeth. Got there on time, went for an x ray then had to wait nearly 2 hours to see someone. If I’d known I’d be waiting that long I would have cancelled the appointment. When going through the list of medical issues, I finally realised just how bad I’ve got. Had any blackouts? Yes (once just after using the commode while having a bad day, the other time after trying to sit up in bed, also on a bad day). Any seizures? No, but I get jerks in my limbs that can throw me off the bed, as well as muscle spasms and milder jerks in my limbs that last for hours (and can jerk me out of my wheelchair, with the seatbelt on). Dizziness? I can’t remember the last time I wasn’t dizzy, but it can get really bad if I sit up, even on normal days.

I managed to contain the vomiting on Tuesday by swallowing it. Not nice, but I didn’t want to upset any other bus passengers. I’d also lost 4lbs that week, as I found out at Slimming World on the Tuesday morning (too ill to go really, but I was still being stubborn). That was in the week I wasn’t really following the plan.

So what’s come out of this? I checked where I am on the AYME functioning scale again. Answer: around 10-15% normally, lower on a bad day. No denying I’m severely affected any more, though it’s still hard to accept. When I was going out, yes I could do it, but I was trying to ignore how ill it was making me. I’ve asked how to join the SAMs (severely affected members) list at AYME,

I’ve told my tutor that even distance learning isn’t going to be possible, as I’m just too ill. I can’t even concentrate on a TV show all the way through without it making me more ill, so trying to study would be far too much (not to mention I’ve already fallen behind and not heard from my lecturer about what I’ve missed). So I’m going to be withdrawn from the course. I’ve also let the Interface students know via the Facebook page. I’m really going to miss college, as it was the last bit of normality in my life, but I need to keep what functioning I still have.

I’m also putting Slimming World on hold, at least for now. The meetings are making me more ill (as much as I didn’t want to admit it) and trying to follow a diet while spending so much time nauseous is probably not the best idea. Also, since coming off the quetiapine my appetite has reduced drastically, so I’ll be able to lose weight just be being sensible with what I eat. I’m also not going to pressure myself to lose weight- I just don’t want to gain any. I’ll be weighing myself at home every Tuesday morning on the Wii Fit to monitor it, and will change what I’m eating if I start gaining, or losing weight too quickly. I shall be emailing my Slimming World consultant after I’ve finished this blog post.

I’m also not going to be having any more baths, at least until the bath lift is fitted. I’ve been stuck once, been close a few more times, and it’s not worth making myself ill over. We tried washing my hair in the sink, but I’m too tall to make that work, so I’ve bought an inflatable hair washing thing for use on my bed. Bed baths are also a lot less tiring than washing in the bathroom, so it will be better overall (I still get exhausted when trying to do it myself, though).

No more going out unless it’s necessary. I’ve a doctors appointment on Tuesday, so will be going to that. I will also be going to the hairdressers next week. This may not seem necessary, but it’s been over a year since I last got my hair trimmed, and getting it done will make it easier to brush. It will also allow me to get my hair washed outside of bed :p Today nice Icelandic carer put my hair into a French plait, which keeps it pretty tidy even spending 22+ hours a day in bed.

I’m also slowly compiling a list of all my current symptoms, that I’ll be giving to my GP and consultant. Hopefully they’ll have ideas on how to deal with some of them, but if not, at least it will mean they’re aware of them. I’m also trying to figure out the baseline for activities, but this is hard as it’s in direct competition with my problems with transitions (if I try and stop an activity before I’m ready, then I get incredibly anxious and may panic, which uses more energy than just continuing the activity for a bit longer). I have made it so I’m only sitting at my computer for an hour at a time, maximum, and reminding myself after half an hour and 45 minutes that I’ve only so much time remaining. That worked well today- came off after 45 minutes because I’d reminded myself after half an hour, and I was at a good stopping place in levelling on my mage in World of Warcraft 🙂

I’m not doing so well on the getting to sleep at the same time every night, but I’m less worried about that. I managed 12 hours yesterday (from 1am to 1.30pm, with a half hour dozy resting period when the carer arrived at 10am) so it looks like I can sleep naturally. It does mean that it’s 2.08am now though, and I’ll probably not be going to sleep before 3am. Oh well- one thing at a time.

Bad Weekend

So Thursday. CFS clinic then colposcopy then flu jab. In the CFS clinic, we agreed I’d try and find a baseline for all my activities. This is going to be hard, as on good days I can do most for quite a while, then on bad days I can’t do most of them at all. I will give it try though. The physiotherapist also wants me to split up my high activity stuff with more low activity (as resting isn’t restful for me at all) which is also going to be difficult, depending on the activity. I am working on it.

The colposcopy was very painful, but it turns out everything is fine. My cervix is perfectly normal for a woman of reproductive age. I also got to see it on the screen, which was pretty cool 🙂 I now have to make an appointment to get my coil changed, which I’m really not looking forward to.

The flu jab hurt. I also had to be very brave and not make a big deal of it, because Johan was petrified, even after taking diazepam. It took him 15 minutes to get his, but he did it, and I’m very proud of him. My left arm has been very sore since.

I was out in my wheelchair for about 7 hours on Thursday. I can manage sitting in it for about 10 minutes before getting worsening symptoms on a good day. It is too upright, and even with the headrest I struggle to remain sitting up. I also ran out of nefopam completely on Thursday, so had to swap to tramadol (and I couldn’t take any more quetiapine). It was a very long day.
Friday I was really ill. Even with the antisickness tablets, I was vomiting everything I took, then vomiting bile. I was intolerant to light and noise, so spent a lot of hours lying with my eye mask and ear defenders on, hoping to die. Oh, and my review with my social worker and the care agency was that afternoon. Trying to explain what was going wrong while trying not to vomit or appear too ill was exhausting, and it didn’t really work that well. I will have to email my social worker to tell him everything I forgot to on Friday. Also on Friday was my friend Kate’s fundraiser for a new wheelchair. I really wanted to go, but was no way well enough, so Johan went by himself. He enjoyed himself, it was fun, she raised lots of money towards her new wheelchair, and Johan won a Segway experience in the raffle 🙂

Saturday I was a little better, but not much. I stopped vomiting, and ate a few things. Still had to nap, and spend a lot of hours with eye mask and ear defenders on. I was on Twitter when I could be, but I was too hot (the weather has been rather summery here) and felt just rotten. The karaoke in the pub next door didn’t help either. On the plus side, I was well enough to watch Doctor Who, which I really enjoyed.

Today I have been a bit better. Even managed a bit of time on my computer (my computer chair is more supportive than my wheelchair, and it reclines, so I can manage longer before feeling ill). Also managed a bath, and got dressed. All of this with Johan, as wasn’t well enough at 10am when the carer came. We also cancelled the bath call for tonight as I’d already had one and it was making me very anxious. I did get a bit emotional, but that calmed down after I’d remembered to take painkillers. Johan made me roast chicken for my tea, which was lovely. Tomorrow I go back to my normal food, as I’ve just been eating what I want the last couple of days. I am worried about Johan though, as the sertraline is making him exhausted, and he’s too tired to even do things he enjoys. It’s also making it harder for him to care for me.

The distance learning has been sorted out. I am to go in one a fortnight, then keep up to date by talking to my lecturer in between, probably using Skype. This is good, as I should technically be able to manage it, if I get back to the same level of functioning as I was last month. The only problem is I’m meant to be going in tomorrow, and that means sitting in my wheelchair for 6 hours. I’m not sure I’m well enough, and the only other option is withdrawal. I’ve also not done any work the last couple of weeks, which also isn’t helping much. I will see how I am in the morning.

Am I Well Enough For College?

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.

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