Jan 062013
 

I started doing this two years ago, and think I’ll continue πŸ™‚

1. What did you do in 2012 that you’d never done before?
Met some awesome friends for the first time (and hopefully not the last) πŸ˜€ (I’ve met friends before, but these specific ones only in 2012.)

2. Did you keep your New Year’s Resolutions, and will you make more for next year?
I kept one of them. I was happy most of the time πŸ™‚ I’ve made new ones that are internet organisation based πŸ™‚

3. Did anyone close to you give birth?
Nope.

4. Did anyone close to you die?
Yes :'(

5. What countries did you visit?
I didn’t go very far this year. I don’t think I even changed county πŸ˜›

6. What would you like to have in 2013 that you lacked in 2012?
I’d like to start getting better. Overall I got worse again.

7. What dates from 2012 will remain etched upon your memory, and why?
Due to my brain fog, I’ll remember some events (especially moving house) but I can’t remember the dates πŸ˜›

8. What was your biggest achievement of the year?
Going to the Interface prom. It was the furthest I was able to travel all year, and it was brilliant even though we had to leave early.

9. What was your biggest failure?
Sitting up. I faint if I try, which is highly annoying πŸ˜› I also could have done better at keeping in contact with people.

10. Did you suffer illness or injury?
My health got a lot worse. I spent nearly the entire year in bed. Getting a tilt in space wheelchair did mean I could go out a bit until I relapsed in September though. I ended up in hospital due to the pain and not being able to swallow of the September relapse, where I discovered hospital is not the best place to be if you have severe noise and light sensitivities and are non-verbal. I’m now trying to avoid it πŸ˜›

11. What was the best thing someone bought you?
That is so hard. I’ve had penguins galore, penguin thermal socks (awesome now my feet don’t know how to stay warm), a purple sparkly penguin for my birthday. I’ve had so many awesome gifts I can’t pick just one, so all of them πŸ™‚

12. Whose behaviour merited celebration?
Johan managed to look after me even as my healthΒ deteriorated. My friends for being awesome and helping me despite most of them being ill themselves.

13. Whose behaviour made you appalled and/or depressed?
The Government. Labour haven’t been great either. The press that have been making out disabled people are all scroungers.

14. Where did most of your money go?
Bills and disability stuff.

15. What did you get really, really, really excited about?
PENGUINS!!!!!!Β :DΒ I got not quite as excited but still really really excited about My Little Pony: Friendship is Magic!

16. What songs will always remind of 2012?
Gangnam Style by PSY

17. Compared to this time last year, are you:
a) happier or sadder?
Happier.
b) fatter or skinnier?
Skinnier. I wanted to stay the same but didn’t. I’m now underweight *curses body*
c) richer or poorer?
About the same really.

18. What do you wish you’d done more of?
I wish I’d been able to get out of bed more. It was my ME that prevented it though.

19. What do you wish you’d done less of?
Fainting πŸ˜› Being so ill in general.

20. How do you plan to spend Christmas?
I spent Christmas in bed, opened my awesome presents, and played Monopoly and had takeaway pizza for tea. Was too ill to watch Doctor Who this year though.

21. Did you fall in love in 2012?
Nope, but I’m still madly in love with Johan πŸ™‚

22. How many one night stands?
None.

23. What was your favourite TV programme?
Doctor Who and My Little Pony: Friendship is Magic πŸ˜€

24. Do you hate anyone now that you didn’t hate this time last year?
My feelings towards the government are getting closer to hatred.

25. What was the best book you read?
The Fault in Our Stars by John Green. I also loved Realand by Dee Kirkby, and can’t wait to read the rest of the Portal series πŸ™‚

26. What was your greatest musical discovery?
Pony Music!

27. What did you want and get?
A new wheelchair that enabled me to go out more than I would have otherwise. Penguin thermal socks πŸ˜› Penguin shoes!

28. What did you want and not get?
To get better. I got worse again. Naughty body.

29. What was your favourite film of this year?
I’ve not seen any films this year. I’m hoping I’ll improve enough to watch them again soon πŸ™‚

30. What did you do on your birthday?
Had a friend come over and chat and play Draw Something on my bed. It was awesome πŸ™‚

31. What one thing would have made your year immeasurably more satisfying?
Being well enough to see more friends and my family. I was mostly happy though πŸ™‚

32. How would you describe your personal fashion concept in 2012?
Pyjamas were the definite main feature. Also got a penguin onesie πŸ˜€

33. What kept you sane?
Chocolate, penguins and TwitterΒ :)Β (Same as last year then :P)

34. Which celebrity/public figure did you fancy the most?
Not really fancied any celebrities this year. Do get a little fangirlish when people I admire talk to me on Twitter (normally mildly well known people, like Bendygirl, Suey2y, or Ember Isolte)

35. What political issue stirred you the most?
The rubbishment of PIP. Argh!

36. Who do you miss?
Sammie. I miss her so so much. I’m hoping to be able to contact her again properly when I improve a little.

37. Who was the best new person you met?
I’m sticking with in person here, and I’m gonna say Persephone River. She stayed with us for a few weeks (as did Sanabitur Anima Mea initially) and it was awesome!

38. What was the best thing you ate?
Probably macaroni cheese. I had been craving it for ages so getting it was so so nice πŸ™‚ It wasn’t even the best macaroni cheese in the world πŸ˜›

39. Tell us a valuable life lesson you learned in 2012?
Penguins make everything better.

40. Quote a song lyric that sums up your year:
I’m not well enough to even listen to songs at the moment, so I’m going to replace this answer with a picture of a penguin.

A Little Penguin

Little Penguin by JJ Harrison (jjharrison89@facebook.com)

 Posted by at 8:29 pm
Jul 282012
 

After my visit from the CFS clinic peoples on Thursday, I’ve been thinking a lot about how adapting things is meaning my life is actually pretty good for someone with severe M.E. (though at the higher end of severe- yay improvements!). I’m unable to sit up unaided for more than a minute or two without feeling horrendously ill and getting severe payback. What sitting I do do is normally limited to using the commode or a toilet- to manage it I either have to be held up by Johan or I lean on something in front of me- my bed or my wheelchair most commonly.

Most people who can’t sit up would be stuck in bed all day, as I was until very recently. Thanks to a tip from a fellow Spoonie friend, I found and bought a tilt in space reclining wheelchair on eBay. It’s not perfect- I’m too tall for it and as it’s a manual I’m completely reliant on Johan to move it and to adjust it, but it’s many, many times better than my old, unsupportive wheelchair that I could only managed by being strapped up and even then would pay dearly for any use of it.

This wheelchair means I’m no longer completely bed bound. As it’s tilted, gravity keeps me in position so I’m not at risk of falling so don’t need strapping in (though it has a seatbelt that I use to stop it getting caught in the wheels, mostly :P). As it’s reclined, I don’t get the horrendous symptoms that being too upright causes me. Since my health in general has sightly improved, I can now manage most of the day sitting/lying in the chair, which means I can go into the living room and use my desktop computer (which means I can play computer games, which are an excellent distraction from pain and horrible symptoms) and also means I’m able to go out about once a week to go shopping or for a meal or something. I’m very lucky in that noise, light and other sensory stuff don’t make me as ill as they once did, so with sensible precautions (sunglasses, headphones and ear defenders as needed) I’m able to tolerate gaming, the outside, having the television on and stuff pretty well now. I can also sleep in it if I need to.

Since I’m getting less muscle spasms and am a tiny bit stronger, I can now use a fork or spoon again. Only a very lightweight plastic one, and I have some foam tubing over the handle to make it easier to grip (which also absorbs the spasms I still have which helps). My physiotherapist recommended the tubing (she said to get it from a DIY shop, though we got ours from Complete Care Shop as I was buying other stuff from there at the time anyway). This means I can feed myself foods that I can’t use my fingers effectively for, and don’t need Johan to feed me. I still have days I can’t manage it, but when I can it’s amazing for my independence.

When I’m in bed, I don’t have access to my desktop computer. I have an over bed table (also from Complete Care Shop- I really like them for decent priced disability stuff) so I can use my laptop if I want/need to, but for most things I use my ASUS Eee Pad Transformer. I used to use my mobile phone a lot in bed, but as my M.E. got worse I found typing on a small screen (even with Swype or Slide-IT) really difficult, especially when my hands were shaky or spasming a lot. Having a tablet is much better for me, as the screen is bigger so the keys are as well, I can see things better on the bigger screen, if I’m lying on my side I can just prop it up with pillows/a teddy/my hand, and it also has a keyboard dock that means longer typing things (such as this blog post) are much easier and it becomes like a lightweight netbook.

Using my tablet means I can read blogs, use Twitter (and Facebook, though I find that harder), play Draw Something, keep up with emails, check my calendar, the time, the weather, read websites, listen to music and lots of other stuff when I’m stuck in bed, serving as a distraction, keeping me in touch with friends, and basically helping me keep my sanity, especially when I can’t sleep at night (which happens a lot since I’m naturally nocturnal, and I also sometimes get painsomnia). I also use it with Kindle to try and read children’s books when I’m able to, and use it to communicate with Johan through Google Talk as we both find that easier than talking a lot of the time (or when he’s gone out).

I also have an iPhone. I never thought I’d get one (I’m a big Android lover- I have a HTC Desire and my tablet also runs it), but I discovered that there are better communication apps for iOS (I have a couple on my tablet but they’re prone to being buggy). My main uses for my iPhone are for internet tethering when I go out (yay for 3’s One package with actual unlimited bandwidth and tethering allowed) and as a communication device when I’m unable to speak, using the awesome Grid Player (the iPhone/iPad app is free, but only comes with a couple of grids- fine for occasional use but I’m thinking of buying the main Grid 2 software for Windows so I can customise them, though that’ll be a few hundred pounds). I also have apps on there for checking my bank account, emails, calendar and stuff and sometimes use it when a tablet is too big for whatever reason for the stuff I’d often use my tablet for (the iPhone keyboard is remarkably shaky/spasmy-hand friendly, to my surprise).

Without my technology, I’d be stuck when I can’t speak, as I’m unable to hold and write with a pen (I can sometimes manage a scribble for a signature, but that’s very hit and miss and I can only do it once). I’d be much more isolated, bored out of my mind (as I’m unable to hold up physical books most of the time, plus I can’t change the text size if needed). I’d be unable to talk to my friends, wouldn’t keep up with my interests, wouldn’t be able to manage the household finances or help with the shopping (we do it online- sometimes I place the order and Johan helps me, sometimes Johan does it but I go through the online shop myself to choose things). I communicate with pretty much everyone by email, Twitter, Facebook or instant messenger, including people like social services, the council and even local businesses, so I can feel like a part of society even when I’m too ill to go out into it.

Another thing that makes my life so much easier is my Trabasack. I’ve reviewed it before, but it does help me a lot. Right now I’m using it with the media mount to hold my tablet and the keyboard dock in the right position to make writing this blog post as easy as possible in bed. I use it as a table when I’m in my wheelchair- when I go out I use the media mount to hold my tablet (normally without dock) in the correct position to make it easy to use (and Purple Penguin can peek out at the back :P), and it’s my table when I’m eating as well- in bed, when I’m in the living room, and even at Wetherspoons if I can’t get under the tables (as I’m tilted and reclined, my seat is very high and rather long). Oh, and it’s a bag as well so when I go out I keep my glasses, bus pass, purse, medication, tablet dock, tissues, waterproof cover for the Trabasack (useful especially when it rains- which happens a lot in this country), letters- all that sort of stuff in there. I used to be able to get my college books in there along with my tablet and a bottle of pop, though you can’t carry all your technology and your clothes in it for a trip, as Johan once attempted (it resulted in the bag splitting :P).

I have other things that make my life easier. I now live in a ground floor flat, with a wetroom (which will be perfect when I can use the shower and the toilet safely- we’re waiting on the OT for that) and a ramp. The rooms are pretty big and the doors are wide enough to get my chair through without problem. I have a commode so I can go to the toilet despite not being able to get to the bathroom most of the time (and at the moment I can use it independently most of the time- though when I’m a bit more ill I need Johan to help me). I have a double bed to myself so I no longer fall out of bed and can use lots of pillows to hold me in a comfortable position, which we’ve raised up using elephant feet to make transferring easier and to help my carers out. I have a Hydrant (also reviewed before) that means I can drink by myself even though holding a cup is difficult to impossible. I use extra long straws and napkleens to try and stop spillages.

I’ve also adapted to being ill and physically disabled. When I first got M.E. I tried to push through it as I’d always done, only to get more and more ill. I am exceptionally stubborn and that is good for some things, but not so great for others. Due to my other issues and disabilities, it took a while to get diagnosed, so I didn’t know I had M.E. to know to rest. When I did find out it took a while for me to figure out the best way for me to manage it, as with being autistic as well some of the normal methods were a bit counter-productive for me, plus I was still being stubborn about doing Computing at college πŸ˜›

I lost the ability to walk pretty quickly- I first used a wheelchair seven months into the illness (before I’d even twigged on to it not being just depression), was using crutches most of the time not too long after that (and a wheelchair for longer distances), needed a wheelchair outdoors all the time just after a year into the illness (I realised this when I tried to walk to the doctors and nearly didn’t get back home), and then had a big relapse that completely killed my ability to walk even one or two steps about three months after that, caused by overdoing it when Johan got the flu and then exam stuff. Although using a wheelchair didn’t cause me to be unable to walk (if I’d used it more often earlier on I may not have become as ill as I did) I adapted pretty quickly and realised mobility was more important.

I managed to complete a year at college (using a wheelchair most of the time, though I could walk with crutches in Interface initially), thanks to the support of my tutors and support staff at college. My illness continued to get worse over time (some due to me still pushing a bit, despite everyone around me trying to tell me not to- silly Danni, and some just generally getting worse) and I realised I couldn’t manage the second year when I tried to get in for my fortnightly lesson (the college had agreed I could do most of it at home) and ended up lying on the floor of the chill out room at Interface exceptionally ill just from trying to get there. At that point I was mostly bed bound but hadn’t exactly accepted it πŸ˜›

December last year I reached rock bottom. Lots of things added up and I had a massive relapse, which at its worst meant I was barely existing. The only reason I didn’t end up in hospital is because Johan didn’t know to call a doctor out when I stopped being able to drink (luckily only for a couple of days- I was too exhausted to be able to swallow). I couldn’t eat, couldn’t move, was in so much pain I was hallucinating, was in and out of consciousness, couldn’t deal with any stimulation (Johan being in the same room was hell, I couldn’t tolerate any noise, light or touch at all), couldn’t communicate. Luckily the worst of it lasted only a few days, though I was still very very ill most of that month, and although I’m improving now I’m still pretty ill.

One of the things that experiencing very severe M.E. in December has done is given me a new perspective. I currently judge how I am based on how I was in December, rather than what I was like before I had M.E. That way, I know I’m doing really well and improving, even if from the outside I’m still severely disabled. I might not be able to sit up (though I’m very very slowly trying to work on that), but I can go out- which is more important really?

I’m lucky that I have very supportive professionals helping me. My GP at my old flat actually had a decent understanding of M.E. (he was the first to diagnose it, and although he knew he wasn’t an expert did try and help any way he could). My specialist is very good with M.E. (even calling it that) and I really need to see him again as the only problem was he doesn’t do home visits and I was too ill to go to the hospital πŸ˜›

The CFS clinic people see me at home, and despite their insistence on calling M.E. chronic fatigue syndrome (which I disagree with but think that getting into arguments about the name isn’t going to help me right now) they’ve been exceptionally helpful. When it became clear that I wasn’t well enough to try graded activity therapy (trying to monitor my activity levels was making me more ill) instead of telling me to continue they told me to stop and came up with a plan to help me learn to manage it myself. What I’m doing now is trying to listen to my body. I do what I feel able to do, and rest when I need to. I’m trying not to worry about when I sleep while it’s been disrupted, though ideally I want to be getting into some sort of sleeping routine in the long run. I can nap if I need to. I’m not worrying about walking- my physiotherapist would much rather I be in my wheelchair as much as I can be than walking a tiny bit but then spending the rest the time in bed. By the way, they’re okay with me in bed if I need to be- I’m not to force myself up if I’m not well enough, it’s just at the stage I am now I can go in my chair (which they like, and they’re supportive of the idea of an electric version so long as I can transfer safely) and that’s better for my body than being in bed all day as I’m slightly more upright and moving a little bit more. They want me to use equipment and things to improve my quality of life, and the main thing is I’m not to overdo it if I can help it.

They’re helping me with the goals I want to achieve. I want to go to Leeds, but I’m not well enough yet. They’ve suggested that I try staying in a hotel somewhere a bit closer first, and then if I can manage staying away from home then work on being well enough to be able to travel and stay away. I want to go to the cinema, and they’ve said that I should try that after I’m able to watch an entire film plus do stuff on either side (to allow for the travelling) at home first. All very sensible, and it helps me plan what I’m wanting to do.

They also say that the attitude I have now, of accepting what I can and can’t do and not pushing myself to do more than my body is capable of just because I feel I should is the right one to have, and the one that’s most likely to help me improve. I hear so many people being told to push through their symptoms by professionals (and other people), yet I’m being told to listen to mine and not to overdo it by pretty much everyone (one GP excepted). I take medication as I need it (painkillers, anti nausea tablets, that sort of thing) and try really hard to stick within my body’s limitations. It seems to be working- I’m improving. I still have a long way to go (I can watch television, as in tolerate the light, sound and movement, but can’t follow a plot, and I can physically manage reading an ebook but struggle with following the plot, which is why I’m sticking to children’s books right now) but I will get there.

I know how lucky I am to have the support I have. Johan looks after me day and night. He gives me my medication (capsules and tablets are hard to hold, as are cups with drinks to take them with, plus I can’t remember when to take them), empties my commode, prepares and cooks my food, fetches everything for me, takes me into the living room or outside, helps me with getting changed and washing if the carers aren’t here, remembers things for me, helps me when my brain is broken, lifts me when I’m struggling or I’ve fallen, supports me in every way, as well as being my husband and a brilliant friend. I have carers who wash me, change my clothes, brush my teeth and hair, and who also help with the housework to take the load off Johan a bit. We now have a cleaner who can do more in an hour than Johan can do in a week (I can’t do any of it at all). I have the support of the CFS clinic, who may not have a cure for me, but are doing their best to help me have the best quality of life I can and try and help me improve it a bit. My friends have always been there for me, even if my illness means that keeping in touch can be difficult or even impossible at times.

I still have severe M.E. I can’t sit up, I can’t walk, I have pretty severe cognitive issues, I need help with nearly all tasks, I have to be very careful about how much energy I use for anything. But with the slight improvements to my health meaning I can tolerate just that bit more, and adapting things, my life is pretty good regardless. And I’m happy.

(I’m also happy that I’m able to write this blog post, meaning that after my big scare a few days ago my brain is finally getting back to where it was- I may not be able to remember the things I need to and ask for pasties I don’t even like in Greggs as I get words muddled up, or follow plots or things, but at least I can do massive word dumps again πŸ˜‰ )

 Posted by at 8:51 am
May 192012
 

I wasn’t feeling well so Johan went to the shop to go get me some Milkybar and a bottle of Vimto squash. I am such a big kid but it did help πŸ™‚

This week has not been brilliant. Seems all the blogging and stuff last week was just a bit too much, so needed to be in a darkened room and couldn’t sit up until today. On Thursday the CFS Clinic peoples came to see me, which we weren’t expecting as we’d forgotten to put the appointment in the calendar. They were nice though- understood that this relapse is one of those things (it’s still the one from the end of April) and just want me to do what I can when I can, and rest lots. They also said I could use heat as much as I like for pain, so long as it’s not so hot it burns me πŸ˜› They’d been contacted by my GP but they don’t deal with medication themselves, so have recommended that he contact the pain clinic. That is all very good. They were not here for very long as talking and processing verbal stuff is the most tiring thing I can do, but they’ll be back in about 6-8 weeks to see how I’m getting on. I likes them πŸ™‚

The big thing for me is that I’ve been invited to the Interface Prom again this year (the old students are normally invited). I really really want to go. It’s in about a month, so it may be possible if I improve enough. The venue is the same as last year which is good, and as the staff and students already know me and my M.E they won’t mind if I need to lie down or stuff (there are some sofas just outside the room the actual prom is in- ideal for lying on :P). I may be being a little optimistic since I’m currently still bedbound, but if I can get back to where I was in April (which is doable) then I’ll be able to go. We’ll have to plan it really well and I might not be able to stay very long, but it would be worth any payback/relapse I’d get as I’d get to see my friends πŸ™‚ We’ll see.

Today I’m doing the best I’ve been for a little bit- I can cope with light normally again, I’m sitting propped up in bed, and I just feel much more with it. I actually feel well enough to go into the living room but I don’t want to push it yet- if I’m still the same tomorrow I’ll go through then. I’m just aware that yesterday I still couldn’t cope with light and couldn’t cope with more than one pillow until the end of the day, so don’t want to overdo it.

Diablo 3 is out and Johan is playing a lot of it. He has a level 55 Monk (level cap is 60) and has completed Normal and Nightmare difficulties. He’s currently on Act 2 (of 4) of Hell difficulty (second highest- the hardest level is Inferno) and is doing pretty well. I want to play it (I got it free with the World of Warcraft Annual Pass) so I’m hoping I’ll be able to go on my computer soon.

I managed to call T-Mobile on Wednesday (I think) to sort out my contact. I was going to move my number to Three (who I got my iPhone with) and they gave me the PAC I needed to transfer it, but immediately after they phoned me back and begged me to stay for Β£5 a month. I agreed as I was originally going to put it on a Β£10 a month contract anyway and the 300 anytime minutes inculding 08 numbers is very useful, as they’re currently not covered by my iPhone and I have to pay using the landline for 0845 and similar. I don’t need internet on it as my iPhone contract includes tethering, but having a spare phone is useful and means I have access to all the Android Market (I refuse to call it Google Play- silly name) as well as the App Store. The contract is for 12 months so is only Β£60 in total, which is less than 2 months worth previously, so I’m happy.

Twitter has been amazing as normal, keeping me sane while I’ve been stuck in the dark mostly by myself. I’m still completely overwhelmed by Facebook, so still only using it very occasionally. Johan’s been coming in and talking to me when I’ve been up to it, and disappearing again when he can see it’s making me (more) tired, as well as looking after me generally.

The carers are starting on Monday. Not spoken to them yet (I’m hoping to do that at some point) but it’s a different agency and they offer a bigger range of help than the last agency, so we’re hoping it’ll go well. If they’re really good we may ask for some extra hours paid privately for some extra help for Johan. First visit is at 10am, then it’ll be late evening (not sure what time- we do have a care plan but I’ve not been able to look at it yet). I’m hoping them washing me, helping me with teeth brushing, hair brushing and when I’m up to it getting dressed will help Johan out a lot. When the shower’s fixed I’ll be able to have one up to three times a week if I’m able to (1 hour calls) which will be awesome.

I think things are looking up πŸ™‚

 Posted by at 3:28 pm
May 092012
 

For M.E. Awareness week I am blogging about living with M.E. On Monday I wrote about what M.E. is, and yesterday I wrote about how it affects me. Today I’m writing about how I cope with severe M.E.

Due to the severity of my M.E, I’m unable to do many of the normal everyday stuff that other people do. This doesn’t mean that I spend all my time moaning about stuff though (I do a bit of that when things are bad, but I try to limit it). I’m very lucky that I don’t have depression alongside my M.E, (in fact, I recovered from 12 years of severe depression a few months into getting M.E, which is hard to understand but I have my theories) so the motivation to do things is intact. It’s just my body doesn’t let me do them.

As I spend a lot of time lying in bed, I need something to do while there. The answer for me is the tablet computer I mentioned yesterday- my ASUS Eee Pad Transformer. Her name is Cameron πŸ™‚ She runs Android Ice Cream Sandwich 4.0.4 with a custom rom (that bit’s just because I’m a geek) and she basically keeps me sane. On Cameron I’m able to use Twitter (I like the Plume app- I’ve made it all colourful), keep up with emails, read blog posts and websites, play Draw Something (and get complimented on my drawings as I’ve got a 10″ screen which makes it easier than on a small phone), communicate with other people either online or when I can’t speak or it’s too exhausting, and when I’m well enough I can watch videos or television shows, read books or listen to music on it πŸ™‚ I’m also using it with the keyboard dock to type this blog post (the keyboard dock makes it like a netbook).

Twitter is an awesome source of support for me. As tweets are 140 characters or less, they’re short enough for my brain to process. I’ve met so many wonderful, supportive people on there, both with and without disabilities, and it’s so helpful to be able to talk to people who are going through similar things to me. I’m very fond of virtual hugs and squishes, especially as I’m often too ill for real life ones. The Spoonies* especially are amazing, as they’re all ill themselves yet try to help other people as much as they can. We celebrate each other’s acheievements, help each other with problems, and just chat and share things between us. I also get most of my news through there (often shared by someone I follow). Quite a lot of my day is spent on Twitter as it doesn’t make me more ill, and it’s a very postive thing for me.

I follow quite a lot of different blogs in my Google Reader, and try to read all the posts that are there. This doesn’t mean I necessarily understand them, and some of the longer ones can be quite hard (which I feel a bit bad about as I’m guilty of that myself) but it helps me keep up with things and follow what people are doing. Since reading is the easiest way for me to take in information, I read blogs in a similar way to how people listen to podcasts (which is very difficult for me- some people find it easier than reading but I’m not one of them) so it’s another good way for me to pass the time and feel like I’m doing something, even if I’m unable to comment very much at all. I also follow some I can haz cheezburger? and comic feeds that are normally good πŸ™‚

My faith is very important to me, though it’s personal so I don’t talk about it all that much (it’s not that I’m embarrassed, it’s just something I don’t feel I need to share constantly). I’m a Christian (Anglican- mostly Anglo-Catholic though I’m very much for gay marriage, gay and female clergy at every level, and other “liberal” stuff) and knowing God is always there for me and Jesus knows what suffering is like is a constant comfort. I pray a lot, sometimes in words, most of the time without, and though I can’t make it to church I know He understands πŸ™‚

I used to spend a lot of time on the AYME (Association of Young people with M.E) member forums, though now it’s difficult for me to get on there much. When I can though the support is awesome, especially from the other SAMs (severely affected members). I also receive emails and the magazine from them, and can contact them (or Johan can contact them for me) if I have any questions or I need help regarding my M.E. As most of the members are of normal education age it was especially helpful when I was attending college, as there were other people going through similar things. Although I don’t agree with their stance on some things (I’m not going to go into that here) the support I’ve had as a member, especially from the other members, is excellent.

I try to remain as positive as I can (this does not mean you should tell me or any other ill person to be positive- that just makes the person feel lousy). Everything I’m able to do is something to celebrate, even little things like being able to roll over and being able to eat solid food πŸ™‚ I am so grateful for everything I can do as I’m aware it could be so much worse. I limit the amount of bad news I read- I don’t avoid it entirely but as I can’t process things properly or do anything about it there’s no point me getting upset. I like trying to be as supportive of my friends as they are as me- not sure I manage that but I do like giving out squishes πŸ™‚ I hope they improve, especially those who are more ill than I am. I surround myself with things that make me happy- I have Penguin and Katie (my teddy) in my bed with me at all times (Penguin is normally in constant contact with me), Erica is close by, I have a penguin on my wall and a purple penguin canvas next to my bed. When we get the room decorated and the blind up it’ll be even nicer in here for me πŸ™‚ I know and like who I am and although I hate my M.E, I don’t hate myself.

When I can do something, I take advantage of it (though I try not to overdo it as that leads to payback or relapse). Sitting at my computer and playing World of Warcraft (which I currently do about 2 or 3 times a week, though I’m trying to build that up) is a big thing for me, even if I’m not well enough to do progression raiding with my guild now (though when I’m having a good day I can sometimes do Looking For Raid as that’s easy). That’s the best distraction from the pain and how ill I am I’ve got, as I get into my character and what I’m doing so well. Sometimes we’re quite creative to let me do things- I originally discovered I could stay upright in my wheelchair to stay upright by tying a scarf around my chest, which meant that getting a torso harness allowed me to go out a few times. That was just amazing and the memories from then helped me stay positive during the relapse. My weekly wash is one of the best parts of the week, even though it is so exhausting and painful at the time and causes payback.

The main thing I do is listen to my body. I don’t concentrate so much on what or how many symptoms I have (though sometimes they’re pretty demanding for me to know they’re there ;), but more on how I’m feeling overall. I then judge if I feel up to doing something, and if I do I’ll do it. Sometimes I get this wrong and overdo it, but most of the time this works really well and it allowed me to build back up from the relapse in December, and it’s helping me recover from the relapse a few weeks ago. I don’t have structured rests breaks (trying to do that and track them was too exhausting), but most of the stuff I do is pretty low energy and I often just stare into space or just lie there with my eyes closed for 5-10 minutes, which seems to work just as well. Sometimes if I feel I need it I’ll either nap or lie with my eye mask on to rest completely. I sleep when I feel sleepy (which is slightly different to the exhaustion and fatigue I experience all the time) and do things when I feel able to do them. It means I’m not always awake at the same times each day, but trying to force a “normal” sleeping pattern just makes me worse.

On the more medical side, I take tramadol and ibuprofen for the pain, lansoprazole to protect my stomach from the ibuprofen (which also helps with my acid reflux and heartburn a bit), cyclizine to cope with nausea, Buccastem (buccal prochlorperazine) if I’m vomiting too much to take the cyclizine (which works better and for longer, but the Buccastem works long enough for me to take it) and I was meant to be taking vitamin D and calcium supplements but the form I was given (a powder to be mixed up as a drink) was intolerable so I need to ask the doctor for an alternative (when I was last tested for them my vitamin D levels were on the higher side of normal after intensive supplementation as I’d been severely deficient and my calcium levels were normal, so it’s not urgent but it’s to prevent any problems from occuring). These make life tolerable. Last year I was able to come off the psychiatric medication I’d been taking for severe depression (which had helped me a lot) without any relapse. That was a big achievement for me.

Every medical professional I’ve had dealings with since I’ve had M.E. has been very supportive. Some have been surprised at how severe my M.E. is (I then tell them that it can be a lot worse) but all have accepted it’s a physical illness and just want to help me be as well as possible and hopefully improve. This makes me exceptionally lucky, but being believed and knowing I have medical support there makes things so much easier to deal with. The main advice I’ve been given is to get lots of rest, and there has been no suggestion that I do exercise or get any counselling to think my way out of this, though I do see a psychologist and a physiotherapist (the CFS clinic people) to help with management. I did have to have depression ruled out as a cause but due to my history I understood why my consultant wanted to do that before confirming my diagnosis. My old GP recognised my M.E. and initially diagnosed me. My new GP hasn’t even met me yet but has already been very helpful with prescribing medication and contacting the CFS clinic to see how they can help more, and if I need one I can get a home visit (I don’t want to bother them if I don’t need to, and the things I need at the moment are minor so can either wait until I can get there or possibly be sorted through another appointment that Johan attends for me),

I get (or am in the process of getting) all the support I’m entitled to (at least as far as I know). My benefits are currently sorted, and although I’m yet to be transferred over to ESA I’m obviously ill enough and very easily meet the criteria to get into the support group, though I’m aware I may need to appeal for that. My main worry is the medical but I’m hoping my GP will support me for a home visit, and I already convinced one ATOS doctor for DLA. I’m also entitled to social care, around 15 hours a week, which should be in place again soon. That should help quite a bit. I also go into a care home three times a year for respite to give Johan a break, which helps him loads which in turn helps me. We’re also getting some people in (paid for from my DLA) to do some housework.

My friends have been amazing. Some of them don’t understand M.E. itself (I’m happy to answer any questions they have or direct them to information if they’re interested but don’t want to force it on people who may not want or may struggle to understand) but they’ve all been very supportive and stood by me when I got more ill. They understand that contact may be sporadic as chatting to people is exhausting but when I’m able to they’re just the same as ever πŸ™‚ I’m unable to use Facebook much at the moment as it’s too confusing and exhausting so I don’t keep in touch as often as I like, but I like to see what they’re up to when I can and celebrate with them. I’ve already mentioned the Spoonies and my other friends on Twitter who are a great source of support, and as well as Twitter and Facebook I’ve also made new friends through AYME.

South Tyneside College helping me as much as they did and trying everything they could to help me achieve what I did and to try and help me continue was brilliant. I am sad that I just got too ill to finish my A Level, but I did get my A in AS Computing and I learnt lots at Interface (the autism unit) as well. A special mention goes to Simin, my Computing lecturer, the staff and students at Interface, and especially to Louise, who was my key worker/personal tutor the entire time I was there, and did everything she could to help me, not only with my autism but also with my depression and anxiety and then with my M.E. I don’t think I’d be coping anywhere near as well as I am without what I learnt at Interface and without the support that Louise gave me.

The main person who helps me cope with everything though is Johan. He is my husband and my main carer, and for both he’s been as supportive as he could be. He does everything for me that I can’t do, and helps me with everything that I need help with, and he doesn’t complain and acts like it’s no big deal (except when I’ve woken him up, but that’s understandable :P). He struggles with some bits (the carer and cleaners will help a lot with that) and needs a break when he can get one, but he rarely complains and just get on with it. Without him, I’d be in a care home (which would be worse for me, especially long term). I love him so much and he helps me deal with life so well, and I’m so much happier being with him. I know he feels the same πŸ™‚ He often doesn’t realise just how much he does for me, but he’s giving me the best life I can possibly have with this illness and I’m extremely grateful for that. He is awesome πŸ™‚

I was hoping initially that this post would be shorter than yesterday’s, but it’s turned out longer. I think I like that my coping post is longer than the post talking about how I’m suffering πŸ™‚

*For the Spoon Theory, see butyoudontlooksick.com. It’s a very good, simple way to describe living with a chronic illness, especially one that can fluctuate like M.E or Lupus (which the author has) does. Some of us who use it call ourselves Spoonies.

 Posted by at 1:49 pm
Jan 042012
 
Happy Danni

Happy Danni

I am happy. Considering there was a 12 year period where being happy was exceptionally difficult, being able to say that on a near daily basis is awesome. There are lots of things that make me happy.

I like penguins. Seeing penguins makes me smile- it’s very difficult for me to be sad or upset for long when I am around and aware of penguins. When I was depressed I wasn’t able to be properly aware of penguins, so they couldn’t make me as happy as they do now. My living room is covered in penguins, and everytime I spot one I get a rush of happiness in my brain.

I like the colour purple. Purple is nice and calming and reassuring. I also have quite a lot of purple, as it’s my favourite colour. I covered my wheelchair in purple fabric. When we move house my bedroom is going to be purple (and possibly the living room as well).

I have some amazing friends. Most of them are online- I talk to them on Twitter, Facebook and AYME. These are people who make me feel good about myself, which in turn makes me feel happy. I have reduced my contact with people who get me down, which has also helped. Funnily enough, a lot of my friends have depression or other mental health problems, but because they are so nice and kind even with their illnesses they are a positive part of my life rather than a negative.

Reading blogs and being in touch with people on Facebook and Twitter helped me recover from my depression. Being able to read about other people’s experiences and seeing that I wasn’t alone made it so much easier to get out of the hell I was in. Blogging myself (on my old blog) also helped a lot, as it let me get some of my thoughts and feelings into a way that I could understand them. Being on the right medication also helped, as did having doctors (GP and psychiatrist) who listened to me, accepted me as I was, and stopped trying to force me into boxes that I don’t fit into.

Being diagnosed with autism was also a major step in the right direction for me. I had an explanation for why I was different to other people. I came across autistic adults on the internet who were able to teach me mostly through example that being autistic is okay. Accepting my autism made my life so much easier. I’d especially like to thank Kassiane S., Amanda B., Laura T., Laura R. and those who used to go to the Autistic Liberation Front meetings in Second Life for chatting to me and helping me through the period before and during diagnosis, and while my life was turned upside down.

My old social worker Balamory was also a massive help in my quest to recover from depression. She noticed my autistic traits and badgered lots of people on my behalf, helped me find acceptable housing when I needed it, and also found and helped me attend Interface, the autism unit I used to go to. I wish I had a way of letting you know how far I’ve come since I first met you.

Interface was a massive help. It was my first experience of specialist education, and it allowed me to be successful at college for the first time. There were lots of skills I learnt there that I needed to know to help my independence, both taught on the curriculum and learnt just by being there and with the help of the staff, especially my keyworker Louise. Being able to attend such a brilliant facility just after receiving my diagnosis and having a safe space to just be myself made college doable, even while I was still very mentally ill. Without Louise I don’t think I’d be where I am now.

Learning to be myself again was probably the biggest thing that has made me happy. I spent many years trying to fit in with everyone else, and not quite succeeding. Learning that I was autistic, that being autistic is okay, that being different is okay was one of the best lessons I could have learnt. Once I stopped surpressing my need to move (rocking, flapping, pacing, bouncing) in safe places (at home and in Interface) and then gradually becoming less concerned about doing some of the less extreme movements when out in public meant that I could control my anxiety and actually manage with stuff without it becoming overwhelming. Listening to music, wearing ear defenders, wearing tinted glasses, carrying a pen, my stones and a penguin of some kind with me everywhere are all things that don’t affect anyone but help me to deal with things. Rocking and flapping may look a bit odd, but they don’t hurt anyone and are much better than biting myself or melting down (which sometimes results in head banging).

At home I’m free to not do anything to try and fit in. I play with language- making up words, messing with grammar, talk about random things when they pop into my head. Colin, Vicky and Johan know this very well πŸ™‚ I also do some of the stuff that people are less understanding about, such as having something in my mouth a lot of the time (sucking on things reduces my anxiety and helps me concentrate), humming and random singing, making noises with hands and fingers, wrapping myself tightly in my quilt, piling pillows on top of myself. I also ignore “age appropriateness” when at home, so can go from discussing politics or science or other “grown up” topics to talking in very simplified language about wanting penguins or jelly within seconds. I also play with my wooden blocks, and can spend hours just looking at my colour changing lights or sparkly things. One of the things I want is a sensory room or area with soft flooring and nice lighting and reflective sparkly things where I can spend time just to be myself and not have to worry about things like bills or food shopping or anything else that is difficult for my brain. I was originally going to use the space behind the top of the stairs in our flat (maisonette), but since I can’t walk or manage stairs now and we’ll be moving, it’s been put on hold until we move so I can figure it out when there.

Sammie also makes me happy. As much as I wish I could have her living with me and that I could look after her myself, accepting that I wasn’t in the right place for that (before with my mental health problems, now with my M.E.) and that she is doing so well with her grandparents and is happy herself is enough to make me very happy. I have been terrible at keeping in contact with her, but I’m trying to fix that as I love her more than anyone else in the world.

Johan is just amazing. I am so lucky to have found someone who accepts me for who I am, who has similar interests, and who I love being with and spending time with. That he voluntarily took on the role of carer, both with my mental health problems and now with my physical health problems, while he was struggling himself makes him my hero. I does help that he seems to love me as much as I love him, and I would quite happily spend the rest of my life with him.

Colin and Vicky also took on the carer role for me, going way beyond what was needed as a friend. Both of them helped me to become more independent, and that also meant it was easier to learn to be happy. I will be eternally grateful to both of them for this.

All of this- learning who I was and accepting me for me, learning I wasn’t alone and that there were other people who had similar experiences or similar ways of thinking to me, making some amazing friends who help me feel good about myself, some great support from some brilliant people, having a happy daughter, being in a loving relationship, feeling safe and secure and able to be me, means I was able to recover from depression and be happy. And I like it.

 Posted by at 2:14 pm
Oct 082011
 

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 πŸ™‚

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.

 Posted by at 1:12 am

Project 365: Day 7: 24th June 2011 – The Sad Onion

 College, Danni, Interface, Project 365  Comments Off on Project 365: Day 7: 24th June 2011 – The Sad Onion
Jun 242011
 

The Sad Onion

It was the last day of college today, so I forced myself in. To start with, the Metro I needed to get was off because of cable theft, so I had to get the bus in. Luckily we didn’t arrive too late.

In Interface there was a talent show, which was awesome, though it was very loud at times. I sang with the band (I think they called themselves “In Your Face”).

After leaving college, we decided to go into South Shields to get lunch, and we fancied some cocktails, so had some πŸ™‚ It was fun, though we both had too much food πŸ˜›

We then had a bit of a look around the shops. While in Poundland I spotted a bottle of PVA glue with a Sad Onion on, that is 0-5 instead of 0-3. It has 2 more years of sadness! I also found the whiteboard markers that I like (and bought a packet for my Computing teacher, as she wanted to steal mine), and some coconut hair stuff and batteries.

I also bought a new MP3 player from Argos, to use as a backup when my phone battery dies. I put the pink cover on it πŸ™‚

I was getting rather tired by this point, so we decided to go home, so I could nap before the carer came to give me my bath. That didn’t go to plan, as someone decided to slash another person’s face with a knife on the Metro we were on. That meant the Metro and the station were crawling with police, and I panicked πŸ™ I don’t think the injuries were too serious, though the guy retaliated by beating the other one up.

We finally got home about 5.20pm, but it was too late for a nap. I had my bath when the carer came, and after a rest have been on the computer since then.

 Posted by at 11:54 pm
Jun 232011
 

Prom

Woke up very late today, gone midday (I can’t remember exactly when). Was totally exhausted, and felt pretty rough. Was unsure whether to go to the prom today, but after much dithering decided to go. Got ready, then we left.

The Prom was brilliant πŸ˜€ There were most of the Interface students, both current and past. It was nice seeing some of the old students again πŸ™‚ It was quite loud, but alcohol works brilliantly for pain, anxiety and copingness, so I managed okay. Even danced a small bit in my wheelchair πŸ™‚

I had a great time, and I think other people did too. Got home just before midnight, and have been looking at motability cars since πŸ˜›

 Posted by at 12:15 am

Level 25

 College, Computers, Computing, Danni, Interface, Real Life  Comments Off on Level 25
Jun 202011
 

Saturday was my 25th birthday. It went well.

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 πŸ˜€ 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 Β£300, which for a 32″ LCD with internet is extremely good πŸ™‚ It’s also nice being able to operate it from bed πŸ™‚

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 πŸ™‚ 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 πŸ™‚ 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 πŸ˜›

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 πŸ™‚ 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 πŸ™‚

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 πŸ™‚

 Posted by at 1:10 am
Apr 152011
 

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 πŸ˜€ 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 πŸ˜€ 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 πŸ™‚

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 πŸ˜›

 Posted by at 10:39 pm