Author: Danni

The Purple Penguin! 31 year old autistic geek, living in bed with severe ME (myalgic encephalomyelitis). Likes gaming, purple and penguins.
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.

Danni

Ambulances and Doctors

Danni, M.E., Mental Health, Real Life, World of Warcraft

Saturday night I started experiencing some strange chest pain. It felt like someone was stabbing me every time I breathed. As the pain continued to get worse, my normal dose of tramadol wasn’t touching it, and because it was unusual for me, we called an ambulance (we would have called NHS Direct but as it was chest pain they would have just called an ambulance anyway).

The ambulance men were brilliant. I’ve no clue what they look like, as I was having a bad day, was very noise and light intolerant, and was wearing my eye mask and ear defenders (this is also why I’m calling them ambulance men, as I don’t know if they were paramedics or technicians or one of each). They understood why we called them, and also realised that going into hospital would not be a good idea unless necessary, so they performed all the tests to rule out anything serious. They asked questions about my M.E. and autism, reassured me as appropriate (both that I was okay and that it was right to call them out) and also cracked a few jokes (then told me not to laugh as it made the pain worse).

Once they’d done everything they could, they called the urgent care team (who are nurses) to ask them to come out to see if they could figure out what it was and how to deal with it. They checked to make sure I didn’t have a chest infection or anything like that, and concluded I’d probably pulled a muscle in my chest at some point, and told me to take more tramadol (double my prescribed dose) as they couldn’t prescribe anything stronger themselves. All very useful, and the extra tramadol knocked me out so I was at least able to sleep through the pain.

Johan coped remarkably well on Saturday night, but unfortunately he wasn’t doing overly good mentally. Sunday I spent a lot of time trying to reassure him, and he was unable to distract himself as he normally does. On Monday, I went with him to the MetroCentre as mentioned in the previous post, even though I wasn’t well enough, because he wanted to go and couldn’t do it alone.

Tuesday we both saw the doctor. He swapped my prochlorperaine to a form that dissolves next to the gum, as my nausea and vomiting got so bad I couldn’t keep my tablets down. It works well, except on days where I wake up with severe nausea and end up vomiting before I get the chance to take it. I’ve also been given permission to double my tramadol as I need to, which is useful.

For Johan, he took him off sertraline as the side effects weren’t helping things, and put him on mirtazapine instead. Previously Johan has said he didn’t want to go on it because of the weight gain, but he didn’t protest, and I wasn’t going to as if any medication is going to help him, that one will. He also referred him to the crisis team, despite us not being too happy about it, because of how quickly he’d deteriorated and his risk of harming himself.

While in the chemist waiting for our prescriptions, I picked up a few items I wanted to get (makeup brushes, wipes and gloves to make cleaning the commode and bed pan easier, my favourite shampoo and conditioner, some new hair bobbles as most of mine had broken). We also went to the bakery to get some lunch and to another shop for some sweets on the way back, as I like to take advantage of being out when I can. He was still bad on Tuesday evening, but he fell asleep not too long after taking the mirtazapine.

Wednesday morning the crisis team came out. For once, they didn’t make things worse. They can’t see a role for themselves as most of Johan’s anxiety and depression is being caused by the problems with the carers, but they are also sending out some information about advocates for Johan as I’m not well enough to do it for him any more, and contacted my social worker in an attempt to see if he can fix things with the carers. Johan then fell asleep again (mirtazapine is very good for sleep, just sometimes it’s too good) and I dozed off not too long after, as the crisis team exhausted me.

My social worker turned up in the afternoon, to the surprise of both of us. Apparently Johan had been told, and he thinks he told me, but I had no record of it so either he was mistaken or my memory was being lousy :p The social worker realised it wasn’t a good time, so rearranged to come back the next afternoon. By the evening Johan was doing a bit better, and really craving sweet and sour chicken, so went out to the Chinese to get some. He also didn’t need anywhere near as much reassurance as he had been, which is making me think the sertraline was making things worse.

Thursday was a quiet day for me. I didn’t get to sleep until 5am because of sleeping in the afternoon and things being on my mind (which I tried everything to try and solve, including typing them all up, but it didn’t work). When I woke up I was very nauseous, and ended up throwing up before being able to take the prochlorperazine. I did apply some makeup, but took it all off because I didn’t like wearing it when being sick. My social worker arrived at 2.30pm with a woman from A4E, to talk about direct payments. It was fine, apart from being exhausting, and I was also able to tell him things still aren’t improving with the carers and ask about respite for Johan. Ended up falling asleep again afterwards, while Johan went to the MetroCentre (by himself) to get his iPod repaired, which they very kindly replaced for free. Woke up this evening, went on my computer for far too long to level Elisaveta (I got her to 82) then have been resting in bed and chatting to friends in IRC all night.

I have messed up my sleep patterns, but hope to get them back to normal over the next couple of days. We have no appointments until Monday (when Johan sees a psychiatrist) so will be able to work on it. I also still need to figure out my baseline for activities, and have a plan which requires buying large quantities of non-specific, pretty greetings cards. I’m also two weeks behind on Waterloo Road, and trying to get caught up on NCIS whenever I’m feeling well enough to watch a TV programme. Plenty of things to do, just not enough energy to do them.