"I find penguins at present the only comfort in life. One feels everything in the world so sympathetically ridiculous; one can't be angry when one looks at a penguin." – John Ruskin
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.
In January I reported my change in circumstances to the DLA people, as by that point I was unable to walk outside at all. They decided to ignore everything I said in the letter, and kept my original award of higher care, lower mobility. While I was waiting to hear from them, I went from being able to take a few steps to not being able to walk at all, so I felt that I should be entitled to higher mobility (for those who are unable, or virtually unable, to walk). I put in an appeal, and they contacted my GP, consultant, then sent out an evil ATOS doctor last week to do a medical. It must have convinced them, as on Friday I received a letter saying my appeal has been stopped as they’d changed their decision and awarded me higher care, higher mobility 😀 My reasons for having higher care have also been changed from mental health (which is much improved, if not completely fixed) to physical care needs, which is more accurate now.
The back payment came in on Saturday, so I sent Johan out to buy my new television. It does iPlayer and YouTube and stuff, as well as being a million times better than my old one, which is nearly dead. It was less than £300, which for a 32″ LCD with internet is extremely good 🙂 It’s also nice being able to operate it from bed 🙂
What else has happened? I’ve still been really ill. I now spend most of the day in bed (about 20+ hours, sometimes nearly 24) at least four days a week. My sleep is a bit all over the place- little things stop me getting to sleep for hours after my meds would normally knock me out, then I struggle to wake up in the mornings (though to be fair, that’s not unusual).
I had my Computing exam. It went better than expected, so I’m hoping for at least a B, despite not being able to remember anything I’d been taught since Easter. I did the exam in the first aid room, but the bed was too high for me to use it. I took some beanbags but ended up not using them either, as by the time I needed to lie down I only had 3 short questions left, so I answered them, checked my answers, printed it off and went and lay on the recliner in Interface for an hour, napping for quite a bit of it. We stayed in a hotel near the college the night before so I didn’t have to worry about the journey in (we got a taxi from the hotel) and it was nice, though I couldn’t get my wheelchair into the bathroom, despite it supposedly being a disabled room. I crawled instead, and let them know when we were checking out.
Apart from that, I’ve not been in college as much as I wanted to. It’s the last week next week, and there’s the leavers ceremony, prom and things. I want to go but will have to see how my health is.
I did manage to make it to Flamingo Land with the college on Friday though 🙂 First of all everything that could go wrong, did. I struggled to get up after not being able to sleep until 1am because there were people talking very loudly outside. We were slightly late leaving because we forgot something, so we missed the first bus by about 30 seconds. The second bus wasn’t accessible, and we got on the third but I reacted badly to a woman’s perfume so had to get off at Blaydon. We got on the forth bus, but were running really late by then. We missed the metro by less than a minute, so ended up emailing the college to let them know we would be late. One of the support staff picked us up from the metro station, which was good 🙂 Then the lift on the coach wasn’t working properly because the road and path are uneven there. It took 25 minutes until I was lifted onto the lift so I could actually get on the coach 😛
After that though everything went well. I got a disabled band and Johan got a carer band, so we didn’t have to queue for the rides. I went on the first roller coaster to see how I’d manage with it, and it turned out that because they had good back support and I don’t get scared I could manage them fine, so I went on a few 🙂 I also got to see the penguins, which was awesome. I’ve been tired since, but overall I’ve not been much worse than I was anyway, so it was more the long day that did it than being at the theme park itself. Luckily it was pretty quiet there.
I went to little Martin’s birthday party on Monday. He’s getting so big 🙂
I am having problems communicating beyond just Twitter and Facebook at the moment. Instant messenger is exceptionally difficult, even with friends, and emails and letters are pretty much impossible to write. I keep losing speech, which makes communicating with the carers difficult when it happens. I am currently creating an Android app that should help with that at least.
I’ve also started project 365. I’ve posted the first two days to Facebook, and I’ll copy them over here in a minute. I’m hoping that taking a photo everyday, no matter how crappy, will give me something to do 🙂
A lot has happened since my last update in February. The big thing is that Johan’s depression became really bad, which resulted in him having to go into hospital for a bit on 27th March. You can read more about that on his blog here. This was mainly because we still had no help from social services, and even though they’d been warned he was getting that ill they didn’t do anything.
Because Johan went into hospital, social services had to start providing my care. The morning the nurses came out on the Monday (Colin stayed with me overnight on the Sunday, but had to leave for work at 6.30am) they realised I needed a lot more help than two visits daily would allow, as I need help with getting drinks, getting to the toilet, getting food and stuff, as well as things like washing and dressing. Because of this, it was decided I needed to go into a care home while Johan was in hospital. One was found that would take me, and then an ambulance came to take me there (social services suggested a taxi, until Louise (from college) told them I couldn’t walk and was in an upstairs flat, so would need help getting down the stairs). I managed to forget things as I normally do, but it was sorted in the end.
The care home itself was okay. It’s designed for people with physical and learning disabilities, and the other residents were nice. My room was okay, apart from being very brown (I don’t like brown that much) and the doors being too heavy for me to open. This meant that I couldn’t manage to take myself to the toilet after a while, as even though I could crawl there (until I got ill- more on that in a moment) I couldn’t open the door. There were other problems as well, that we’d not realised would happen. I can’t ask for things for myself and I can’t cope with open questions, such as “do you need anything?” (this is a communication problem caused by my autism). This caused problems. It became a big issue on the Friday when I couldn’t ask to get into pyjamas, so had to sleep in my day clothes, including my big hoodie (I can’t lift my arms above shoulder height, so need someone to help me with my top half of clothing).
By Saturday I was ill- I’d overdone it (crawling to the toilet, lifting my bottle of diet coke so I could have a drink, getting myself ready for college on Wednesday morning because the staff claimed I’d changed my mind about going, when I hadn’t, and things) and I couldn’t sit up unsupported or move much. I was in a lot of pain, and I became non-verbal, which is normal when I’m overloaded. The staff’s response was to keep asking me to talk to them. I couldn’t- I couldn’t remember how to speak, and my attempts to do so failed. They had been warned that this could happen, and it was on my care plan, but it must have been forgotten at the time. One of the care staff even touched my face (there was a big sign on the door telling them not to touch me without asking) which didn’t help, and caused me to panic.
Because of my inability to communicate, I went without a drink or going to the toilet for 19 hours. This was not good. I still have a mild UTI from this. When I finally was able to type on my phone, and get one of the care staff to look at it, I was able to tell them that I couldn’t speak, and that the pain was unbearable and I couldn’t take codeine (on the Monday I’d taken some and the abdominal spasms where horrendous even with the buscopan). They called the doctor out, and while I waited (it took him 6 hours to arrive) Johan came and saw me.
Johan was able to get me out of my hoodie (when I’m that ill, I alternate between sweating madly and feeling too hot, to being freezing, so wearing a big hoodie was not the best), get me a drink and somehow get me to the toilet. He was also able to tell the care staff that I needed more help than they were giving me. Louise also phoned the care home (we were in contact via email) and told them about how my autism affects me, and that they need to ask closed questions, such as “do you need a drink?” or “do you need the toilet?”. After she’d spoken to them, things improved a bit, but there were still times they only asked open questions and I couldn’t answer.
Luckily while Johan was there I slowly got the ability to speak back (being more comfortable and being able to talk with him using messenger helped) so when the doctor arrived a few hours later I was able to explain to him that the pain was unbearable and I was too scared to take codeine because of the abdominal spasms being nearly as bad. He gave me a prescription for nefopam, which I’d never heard of before. The care home promised I’d be able to get it in the morning (it was quite late at this point).
Sunday I was still in a lot of pain, and still unable to get out of bed except to go to the toilet, but at least I was now able to drink. My visit that day also cheered me up a bit, which helped. Unfortunately, the chemist the care home uses decided to not be open that day because of a wedding, and hadn’t told them so I wasn’t able to get any painkillers that day at all. I survived though.
On Monday I finally got my painkillers, and they helped a lot. This meant that by the evening I was feeling much better, was able to sit up, and finally got a bath so felt a lot more human (I’d meant to have one on the Friday, but it didn’t happen). Tuesday I was able to go back to college, but by this point the stress from the weekend, on top of the anxiety caused by not knowing if my needs were going to be met meant my mental health had started to get worse, and I started having my first thoughts about suicide in a year. By Friday’s meeting with my social worker and the home care staff (I had been reassessed during this time- the previous assessments weren’t good enough for the physical disabilities team) I was desperate to get home, so when they said that the home care would only be another 10 days, Johan agreed that it would be better for both of us for me to be home. I’ve been back a week and my mental health has gone back to being mostly stable, so I guess it was just the stress.
The good news is that the home carers start on Monday 😀 I’m getting 12 hours a week from them, some in the morning, some in the evening. They’ll help me with getting up in the mornings, getting ready for bed at night, baths three times a week, and also help with doing some basic housework on days I’m not having a bath. This should take a lot of the stress off Johan (who is doing a lot better), which should help a lot.
Okay, what else has happened? I have seen the M.E. specialist, who wants to make sure my tiredness and stuff is not caused by depression (erm, apart from the blip caused by the stress of being in the care home, I’ve not been depressed for a year) or being autistic (even with the explanation I was given about it being caused by overload, I’m not convinced it can cause such exhaustion that you can’t walk). Hopefully once that’s happened, and the M.E. is confirmed again, I should get some coping strategies and things to help. I know that M.E. can’t be cured, but I’ll accept any help at the moment I can, as my functioning is really poor.
I also got my exam result from my AS Computing. I got an A 😀 This is awesome. My predicted grade for the next exam is either an A or a B, depending on what sort of day I’m having. I’ve been enjoying the programming part of the course, even though Visual Basic.net is a bit weird in how it does things. I’m still slightly behind, as I’ve missed a lot of lessons because of being too ill to get in, but I’ll be able to catch up as it’s the Easter holidays now.
Interface has been good. I’m now running an Internet club for the other students, doing stuff like how to send emails, how to behave appropriately on different parts of the internet, how to keep yourself safe and things. I’m hoping it’ll go well.
Tomorrow I’m going to a friend’s wedding. Yay! This will be the first wedding I’ve ever been to as a guest, so it’s very exciting. I may blog about it afterwards 🙂
On my functioning- well, I can stand up for a few seconds on a good day (yay!) but there are so many things I can’t do or need help with. I can’t walk at all, I can’t lift anything heavy so need someone else to pour my drinks, I knock things over all the time (the M.E. has made my dyspraxia much worse). I need someone to brush my teeth, wash/brush my hair, help me with the top half of my clothing. I need my food cut up for me as I can’t do it myself, and often have to eat with my hands because holding a fork or spoon causes my hand to shake uncontrollably. I can self propel my wheelchair for a few seconds, but it’s normally just enough to get around the toilet or get through doors if needed, and if I try to do too much I end up stuck in bed. I can type, but writing is nearly impossible. This is all on good days- on bad days I can’t get out of bed, can’t sit unsupported, and sometimes need Johan to feed me or hold my cup to my mouth. I hate being so dependant on other people, but I’m starting to get used to it.
Okay, I think this blog post is long enough now, but I may do that 30 day song challenge thing I’ve seen on other blogs, starting tomorrow. No promises, though 😛
I’ve had an interesting time. I saw my GP. He persuaded me to try codeine again, at a higher dose. It worked… for the first 90 minutes. Then I had the most horrendous stomach cramps- worse than the pain I was already in. So I stopped taking it. A week later, I ended up in A+E because the pain was unbearable. The morphine I was given also gave me stomach cramps. Because the doctor was able to ask what they were like while I was there, I was able to describe that they were like spasms (I have very poor body awareness and also a bad short/medium term memory, so after they’ve finished I can’t remember what they’re like). She had a think, gave me buscopan and it worked! No more stomach cramps. She also gave me tramadol to last a week (well, until the next morning with a prescription for the week) to last until I saw my GP.
My GP took me off the tramadol and put me back on the codeine, with the buscopan. It works, but it turns out not all the tummy troubles were spasms- I still get a really sore, uncomfortable abdomen with the codeine, but without the spasms I’m not rolling around in agony. I’m taking it because my experiment of not taking it failed, but I’m not happy as tramadol didn’t cause the same problems, and worked better. I am aware that the tramadol shouldn’t really be taken with the other medication I’m on though as it can cause fits, so I’m being a good girl (mostly).
Seeing the doctor also made me a lot more ill. He had me trying to stand up and trying to walk, which exhausted me so much, I’ve been bedbound pretty much all the time since then. Yeah, thanks. I’m currently refusing to go back there, as it’s not worth making myself more ill over it. I need more codeine though, as I only had 2 weeks worth from the first time, so I need to figure out a way of getting a prescription without getting out of bed or using the phone. I suspect I may be writing a letter, then asking Johan to take it down there.
I did manage to get out of bed long enough to go to college last Monday, but I couldn’t concentrate and I really wasn’t well enough to be there, as now I can’t even sit up unsupported for a few minutes. I’ve fallen really behind on Computing, especially since my brain is really foggy. It is half term next week though, so I’m hoping to be able to catch up a bit. I also need to do a bit of catching up with Interface work, but that’s not quite as difficult so shouldn’t take too long, though if it’s worksheets I’ll need a scribe as I can’t hold a pen for much longer than to sign my signature.
Some good news though- my laptop has been repaired, and now works mostly okay. It needs a new battery (not covered by insurance) but it lasts long enough, and since I don’t move around much I can keep it plugged in. It also means that when my concentration comes back I can do some Computing work in bed, as the laptop has Windows on it and runs well enough for VB.Net. I can also play World of Warcraft on it. It’s not good enough for instances or raids, but it’s okay for chatting and dailies. It’s also lighter and cooler than Johan’s laptop, so better for me in bed. I’m really happy to have it back.
In World of Warcraft, I’ve completed my first level 85 normal dungeon! Possibly not the biggest achievement, but it felt good and went well. I could tell how healing has changed, and how I need to adapt for when I get to heroics and raids. I also went to ICC and did a ton of hardmodes, and achievements. It was a lot of fun, as with being all level 85 it didn’t require much concentration, and I already knew most of the fights. I’m hoping to be able to do the rest of it with the same group.
My mood has been a bit up and down, mostly because of pain and being fed up of being stuck in bed. Overall it’s good, I just get a bit sad or upset when I can’t do something, like sit up. Johan’s been pretty ill though- he had a breakdown, and his anxiety and depression got really bad, and he couldn’t speak. He’s back on medication to help with anxiety, and has been referred to the CMHT to get help overall. We know the main cause is being under so much stress from looking after me, but he needs a bit of help to get through this patch.
We finally got our Social Services assessments. The conclusion is I should be entitled to quite a bit of help with personal care, and hopefully Johan can get some respite. Eventually, I’ll probably get a personal assistant, who may be able to help me with getting to and from college. That would be awesome. We also have forms to fill in to move house, on medical needs. I need a property which has level or ramped access, an adapted bathroom, and that is generally wheelchair accessible, since it doesn’t look like I’ll be walking any time soon. When we have moved, I’ll be getting an electric wheelchair if my appeal for higher rate mobility is successful, which would be awesome, as it would give me so much independence.
I’m trying to think of things that I can do in bed, that won’t make me any more ill. I really need to spend less time on my laptop, and I can’t concentrate well enough to read, so I’m thinking of maybe getting some crafty stuff like beads to work with for when I’m not napping. I’m hoping that I’ll be able to get up and maybe go out soon. I’m on day four of not biting my nails, so I’m hoping to get some nail varnish and things to make them pretty 🙂
I’ll try not to take so long over my next blog post 😛
Last week, I pushed myself ridiculously hard in order to pass my AS Computing Comp 2 exam. I was in college Monday-Thursday, and in for far more hours than normal so I could revise. This was mostly because at the beginning of the week, I was only able to complete about 40% of a past paper, so needed to relearn most of the topics.
I managed the exam on Thursday, and I think I did well in it. I managed to answer all the questions and think I may have even got some marks on the essay-style question. My computing lecturer thinks I will get an A in it, and I think that’s a possibility. I even managed the computing lesson that evening, even though I’d had a very long day at the end of a long week.
I was expecting a bit of a relapse from this, and warned both Interface and my Computing lecturer that I may not be in on Monday (yesterday). What I wasn’t expecting was just how hard this relapse is hitting me. Yesterday, I was only able to sit up for about 50 minutes in total, split into a few periods of a few minutes each. Enough for me to get things done, and I lay in bed the rest of the time.
Today, I can’t sit up at all. I try, but I get really dizzy, my vision goes blurry and dark and I feel like I’m going to pass out, so I lie back down. This makes attempting to go to the toilet interesting, as I have to crawl there and lie down after a few seconds. When I get there and on the toilet, I’m having to sit as far forwards as I can without falling off. In total, the process for going to the toilet and then back into my bed is taking around 20 minutes, and then I’m even more exhausted than I was originally.
I’m also experiencing even more pain than normal (which considering I experience severe pain on a daily basis, is saying something), and other little weirdness like being too weak to hold my phone up and not tolerating Johan touching me at all. My temperature regulation is even worse than normal (it’s not that warm in here as the heating has been off, yet I’ve been sweating tons, and then I’ll get really really cold so I’m shivering under my duvet.
Despite feeling more ill than I’ve felt before, I’m in a super happy bouncy mood. My concentration isn’t that great, but it’s not as poor as it has been on other days, which I’m grateful for. Reading and things does make me more exhausted, but I’m managing it by having several 5-10 minute breaks in between stuff. My light sensitivity isn’t that bad, so I can tolerate the laptop (when I can cope with the weight on my legs or chest) and the light being on, though I have to close my eyes every so often. My sound sensitivity is worse, but not intolerable (though I may need to ask Johan to get my earplugs for me at some point).
Anyway, the result of this is that I can’t go to college, and I can’t do any work because I can’t sit at my computer. I’m hoping this is very temporary, and I’ll be more okay in a day or two. I can use the laptop to type for a few minutes at a time, and to browse for a bit longer. I’ve been writing this blog post since about 5.30pm, and I’m just about to finish it now, after 9pm. I’m going to go to sleep soon (I sent Johan out to meet Total Biscuit as I wanted to go but couldn’t) and will see how I am in the morning. If I’m no better, I’m going to ask Johan to contact my doctor to get reassurance that is just an M.E. relapse, and not anything more serious. Hopefully next time I blog it will be a bit happier.
