Month: October 2011

Danni

World Mental Health Day

Danni, Important Stuff, Mental Health, Real Life

(I have permission from Johan to talk about his mental health on my blog.)

Today I’ve had an enjoyable day. Woke up this morning, got washed, dressed, and hair done (in a French plait :D) when lovely Icelandic carer came, then fell asleep again until this afternoon. This afternoon I went on my computer for a short while, and have been reading twitter and blogs while chatting to Johan about things. This evening we went to the MetroCentre, where I had makeup applied and then bought it all in Boots, followed by buying chocolates in Thorntons and going to Nandos for a lovely meal with Johan. We came home, and Johan gave me a lovely bed bath then a massage.

All that is very nice, and though I’ll pay for the day out in a day or two, it was worth it.

So what on earth does this have to do with World Mental Health Day?

I’m lucky- apart from some anxiety issues, I no longer have any severe mental health problems (I did have severe depression and also some psychotic features such as paranoia and hearing voices). I’ve been mentally stable for over 18 months, and stopped taking the last of my psychiatric medications about a week and a half ago. I had been suffering from depression for nearly 12 years before that, so I am extremely grateful to have reached this level of recovery. If it weren’t for the M.E. there is no reason why I wouldn’t be either at university or in a job right now.

Johan, on the other hand, is not so lucky. He’s currently suffering from bad depression. His brain is telling him nearly constantly to hurt himself. He is getting thoughts of suicide. His mood has dropped a lot, over the last fortnight and especially the last few days. Going out this evening and giving me a bed bath were distractions for him, but he was unable to enjoy them as he would have done if he was not depressed. He has asked me to stop him going into the kitchen and to stop him taking my medications as he’s worried that he will hurt himself. I am very worried about him.

Tomorrow we both have appointments with awesome GP, at about the same time. My appointment will be for discussing how I’m getting on with the tramadol (pretty well- it takes the edge of the pain most of the time) and probably talking about having to call an ambulance out on Saturday night (I’ve probably pulled a muscle in my chest, and it’s nowhere near as bad as it was). I’ll talk about that more in another blog post.

Johan’s appointment will be tell the doctor how Johan is getting on mood wise. He was started on sertraline a couple of weeks ago, when we told the doctor his anxiety was getting worse. Johan at the time wasn’t admitting that he was getting depressed again, so I didn’t mention it to the doctor. The medication takes a few weeks to get working, and it’s been making Johan very lethargic among other things, so we’ll be telling the doctor that. We’ll also have to tell the doctor about all the things I mentioned before. I’m hoping that awesome GP will be able to do something to help, though I’m not entirely sure what. Johan, as he’s depressed, is convinced he’s evil, he can’t be helped, and that he doesn’t deserve help. I am aware that this is depression talking, as I used to to think the same way. I do think he can be helped, and will be as supportive as I can be to try and get him that help. It may be that he will need a short stay in hospital, as I am unsure of our ability to keep him safe. Hopefully it won’t come to that.

So there we go. Today, on World Mental Health Day, I’ve been not doing anything to try and raise awareness, but more trying to cope with the mental health problems that have been hurting Johan, while at the same time have been grateful for how mine has improved.

Danni

Okay Body, You Win

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

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.

Danni

Bad Weekend

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

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.