Feb 282015
 

So I had a relapse. Luckily a short one (only a couple of weeks) but it was a hard one. Lots of paralysis, loss of speech, extreme sensory sensitivities, difficulty chewing, moving and swallowing. Not fun.

I think I have to accept I’m not improving as fast as I hoped. Watching telly and playing Minecraft are too much for me at the moment. The second one hurts as it’s something I like to do with Sammie, but the movement makes me dizzy and more nauseous. I’ll have to think of something else we can play together, though for now we just talk while she plays games on her computer and I do whatever.

Urgent things on the to-do list are a hair wash and bedding change. I only want to do it with a carer I trust as I’m still not quite back to where I was. I really desperately want a shower but no hoist or shower chair makes that impossible. I had a bath last June in the care home but I really need something a bit more frequent than that. Bed baths just aren’t the same and I have a build up of dry skin on parts of my body again (there is a rule at the care agency that they’re allowed to apply makeup but not creams. I have no idea why or what the logic behind this is).

I admitted on Tumblr I’m not sure that I’m a cis (not trans) female. I know I’m not male but also don’t feel female, though do like being feminine sometimes. Since I learnt that gender isn’t a binary I realised that just because I’m not male it doesn’t automatically make me female. I think I need to do a bit of exploring in that area. I’m not particularly bothered about pronouns (though male ones do make me look at you weird) and Danni is pretty gender neutral anyway so there’s not much to change. Just something for me to sort out. I’m going with genderqueer or gender questioning for now. (My sexuality is still the same- I’m bisexual/pansexual, depending on definition, as I’m attracted to those of all genders and of no gender. Gender just isn’t a big thing to me.) Identity is important and interesting.

It’s funny but the thing I missed most during the relapse other than talking to Sammie was playing World of Warcraft. I missed the end of the Love is in the Air holiday (so didn’t get all the achievements I wanted) and most of the Lunar Festival. Patch 6.1 has come out and I’ve no idea what I’m doing. I’m still not well enough to do much in game so it’ll take me a bit to catch up I think.

We’re finally getting some of the old furniture out and next week we’re getting the daybed. Esther will have a proper bed to sleep on (we already have the mattress but the sofa is in the way). When I eventually get the hoist sorted I might be able to spend time in another room!

What has been keeping me sane the last few weeks are tablet games. I’m currently playing High School Story, Hollywood U, DragonVale, Kim Kardashian Hollywood (I feel like the only one still playing this), Sudoku and now AdVenture Capitalist. Simple games that require little brain power or movement but keep me entertained. I’m hoping as I get back to where I was I’ll be able to play more complicated ones. I’ve also restarted playing Draw Something as it’s fun.

Communication issues suck. We need a better system to get things done when I’m not well enough to do them (especially food shops). Brain power not good enough to manage to figure this out yet. I need an advocate for health/care stuff, but don’t know how to get one.

Grah. Sometimes I wish life were easier. At least I have people who love me and care about me. It helps a lot :)

 Posted by at 1:22 am
Feb 182015
 

I’m not having a good day. Woke up this morning and the slither of light between the curtain and the wall was too much even with sunglasses. Had a different carer who didn’t introduce herself which made me anxious, especially as I was non verbal and feeling horrendous. Johan fixed the light issue with my slanket and once my tramadol kicked in I was feeling a small bit better, but that was not a good start.

I’ve not been well enough to have someone in my room and I’ve been feeling lonely. Since typing was also hard I couldn’t even chat to someone online for more than a few minutes. I’ve spent most of the day lying there not doing anything because that was all I could do. Eventually I got my voice back and could tolerate my lamp on, but understanding speech and movement meant I had to kick Johan and Esther out.

Was a different carer this evening as well. She arrived early but luckily I was kinda expecting it so didn’t panic. I like her (I very rarely see this one) but talking to her for a few minutes made me feel horrendous and I had to kick her out after the pad change (I did so as politely as I could manage). I’ve been really emotional all day and it’s probably related to how bleh I’ve been.

I’m fed up. I’m fed up of being stuck in bed because the hoist isn’t installed yet. I’m fed up of not being told of changes with the carers so I end up panicking. I’m fed up of not being able to do things because I’m too ill. I’m fed up of not being able to fix things. I’m fed up of being so reliant on other people. I’m fed up of being so sensitive (to noise, touch, light, smell, movement…). I’m fed up of having muscles that get weaker the more I try to use them. I’m fed up of having joints that creak and crunch and keep trying to move out of position. I’m fed up of muscle spasms and jerkiness and getting stuck on one word that I keep repeating instead of saying what I want. I’m fed up of constant pain and weird sensations and being nauseous for years on end. I’m fed up of other people not doing what they’re meant to. I’m fed up of not being able to chase it up because I’m just too ill.

I just want to be better. Please?

 Posted by at 9:23 pm
Feb 062015
 

Understanding other people is something I’ve had to work on for a long time, since I first realised that others weren’t just like me. It’s still something I struggle with, but so long as I’m aware of it I normally do okay.

My default position is that I am average human being (or penguin). I know that in reality I’m pretty far away from average, but it’s an automatic thing. The easiest part for me to understand is that others have different interests, as my own have changed as I’ve gone through life. When I was little I wasn’t obsessed with penguins, but wanted to learn everything about different subjects (such as living in Victorian times). I’m still interested in that type of history, but it’s no longer all consuming as it was then. It’s easy for me to understand that I might not like watching soaps but that others are, and my need to know everything means I’m genuinely interested in what others like and want to talk about, even if I’m not particularly interested in doing said thing (like watching soaps).

It gets more complicated when it comes to life experiences. My childhood was pretty different from the average British kid growing up in the 90s. Although I shared a lot of the same cultural heritage (watching most of the same TV shows and reading the same books), I had domestic violence, homelessness, living with alcoholic and mentally ill parents and other stuff that most people didn’t experience. Add to that being autistic so the way I think is different and my perceptions of life and events are processed differently and it’s no surprise I was seen as weird and odd, though I didn’t realise it until I was 8 (and didn’t know why until I was about 20). I’m still learning that average British person of my age probably knows of Noel’s House Party and Gladiators like I do, but doesn’t know the fear that you might have to leave home unexpectedly or that the scariest thing in the world is adults screaming at each other.

Once I’ve thought logically, I know think people are not like me unless they show they are. What I think or feel in a certain situation is probably going to be different from how I feel, and therefore respond. It’s a conscious process though, as by default I think they will be like me. Johan is very similar to me in personality and thinking style, so in most cases how I will think, feel or respond in a situation is often the same as how he’ll respond, and because I know him very well I also know when he’ll respond differently. My sister Meggy (who isn’t autistic) had a similar upbringing (though with more foster care than I had) but is closer to neurotypical than I am. We often respond in completely different ways to the same situation because of this, and that’s okay. It just means I find it harder to predict how she’s going to respond, though as she’s my sister and I know her pretty well I have a better idea than for a stranger. My other siblings (Becca and Martin) are somewhere in between, as is Sammie.

My autistic and neurodivergent friends are all over the place. Some are very similar to me in many ways, some are basically the complete opposite (they can be just as far away from average, but in the other direction- like I might respond to something by withdrawing into myself and becoming silent, but they’d respond by shouting and being loud). Many of my autistic friends are similar in some ways and different in others. I have friends who absolutely love and crave really loud music, whereas I cannot tolerate it. In general I do better understanding those whose neurotype is close to mine, which includes people with learning disabilities and things like dyslexia or ADHD as well as autism (and some autistic people I struggle with as theirs isn’t like mine). I do have neurotypical friends (and some of them aren’t disabled in other ways) and I have difficulty understanding them, but I’ve put extra effort into trying as they make up most of the population and I don’t want to get it wrong.

Difference is good and I love it, but it does make understanding how people will react to stuff difficult. On a more individual level, I also don’t always know what topics are appropriate for different people- I’m getting better at it but unless I’m told someone doesn’t want to talk about something then I’m not necessarily going to pick up on any non-verbal cues to shut up (though I can read autistic and other neurodivergent body language much better than neurotypical body language in general). Some of the difficulty is because of my childhood (what was normal for me wasn’t the norm for others) but most is just because of how I think differently. The difference in processing things is a factor as well- generally I pick up on sounds, smells and other sensory input much more than others, and it doesn’t take much for it to become overwhelming. That’s got worse since I became ill, but it was there beforehand as well. As a kid I couldn’t figure out why I was getting overwhelmed (so didn’t think to do things like cover my ears or wear sunglasses) and it made my tolerance for things much worse so I’d become aggressive (mostly verbally). I also would have massive meltdowns without knowing what they were. When I was a teen I stopped taking it out on others and turned it more on myself, and shutdowns became more common than the meltdowns did. I don’t hit people who touch me unexpectedly now, though still don’t like it. I’m more likely to bite myself when overwhelmed by panic or in overload.

One thing I wish though is that understanding other people wasn’t all placed on me. I’m expected to act as if I’m neurotypical, and many neurotypical people react badly if I don’t. I’m expected to just understand social situations and body language that isn’t natural to me, yet others aren’t expected to understand me, even if I try and help by explaining what I’m thinking or experiencing. My communication difficulties (which are mostly hidden as my speech is normally fluent) are dismissed as I can appear normal, and it makes life more difficult than it should be. It’s especially upsetting to me that some people who are paid to help me refuse to try and understand my needs, yet I’m expected to understand theirs. It’s scary and makes me afraid to even try. When they do make the effort it’s really good, I just wish it were the norm.

 Posted by at 4:04 am
Jan 282015
 

There are parts of this illness that are really frustrating. Some are really obvious, like not being able to get out of bed, my hands not working properly and fainting when sitting up too much. Others are less so.

Yesterday I wanted to watch television. Overall I’ve been relatively stable the last few months, and I was getting a bit bored of my normal mobile games/reading stuff on my tablet/resting routine. So I watched two television shows. The first was Penguins on a Plane (which I recorded a few months ago) and the second was Supernanny US. Neither show had fast movement, loud explosions, or a complicated plot to keep track of.

Soon after finishing Supernanny, I felt horrendeous. I’d been sweating while watching telly (I also sweat when going on my computer or reading a book) and now I was alternating between too hot and too cold. My pain levels went through the roof and I was really close to throwing up. All because I watched a bit of television. Now we’re pretty good at getting my symptoms back under control so they’re bearable again, yet trying to do something as normal as watching television makes me more ill. It’s not fair.

I’m not sure what it is about watching television that my body doesn’t like. I can spend much more time on the computer than I can watching telly (though recently I’ve been going from fine to really ill in seconds when on my computer as well). If I knew what it was it would be easier to deal with. It’s frustrating.

Things have happened since my last post. Somehow I got my DLA renewed before it ran out (and we only got the form in two days before the end date). That was a massive relief. We finally got everything together to tell the housing benefit side of the council that Esther is here, so we’re no longer paying the bedroom tax (they probably didn’t complain about us taking so long because it increased our amount of benefit rather than reducing it).

I had an eye test (in bed) and it turns out I’m a lot more short sighted than I was. This brings my left eye closer to normal as it’s my long sighted eye, and makes my right eye worse. Overall my right eye is my better eye (closest to normal) but it’s also my weakest. That surprised the optician. He also said he doesn’t get many people who can read the bottom row as most people he sees are older. I’m getting my new glasses (and sunglasses) tomorrow so I’m hoping they’ll help with the double vision and stuff. Maybe it’ll make watching telly easier as well?

I saw the CFS team but there’s not much they can do until I have my hoist. They’ve written a letter to the OT in charge of it asking why he’s not sorted it yet (they phoned him last year and he said he’d speak to us before Christmas). I wanna get out of bed and all that’s stopping me now is not being able to transfer safely. I also want a shower. Some stuff is the fault of the illness, but others is people not doing what they said they’d do.

 Posted by at 9:47 pm
Jan 122015
 

I got woken up around 1am by the neighbours playing music. They finally stopped about 3am but I’ve had to take cyclizine for the nausea it caused and I’m now sleepy but not quite enough to actually sleep.

DLA form was sent last week. It’s been received but as my end date was the 11th January I’m expecting to go without for a bit.

Johan’s Carer’s Allowance was also meant to stop (as it’s tied to the DLA claim but unlike DLA is paid in advance) yet he got the full amount this morning. Cue confusion. I guess we’ll see how much DLA I get on Tuesday (it should be slightly lower).

I’ve been spending far too many hours making spreadsheets to help me organise what I’m doing in various tablet games. They’re mostly done, though I need to remember one formula I’ve forgotten and Google isn’t telling me. I’m sure it’ll come back to me.

In Dragonvale I’m trying to breed a Panlong Dragon while it’s available. There’s a chance I’ve got it as the breeding time is long enough but there are other cool dragons it can be. The spreadsheet helps me work out which habitats I need and should put dragons into, which ones I should use for breeding and helps me keep track of what dragons I already have.

In High School Story I’m trying to party for a Country female. I keep getting Country males, Slacker males and Musician males. The spreadsheet helps me track which classmate types I’ve already got, what Hangouts I need and the party times of each type. I’m also completing as meant quests as I can, concentrating on the main storyline first. It would be nice if it didn’t conform to the gender binary but I have a few classmates I head canon as trans, genderless or androgynous.

In Hollywood U I’ve finished all the current quests and dates. I’m currently partying for a Composer male, but keep getting Composer females. The spreadsheet is basically the same as the High School Story one. I’m also trying to level a male and female of each type to level 10, so it’s easier for quests as they come along. Once I’ve done that it’ll be levelling any remaining students to level 10 and the main characters to at least level 20. As I’ve a lot less students than in High School Story I only have one trans woman so far.

I’m still playing Kim Kardashian Hollywood. I nearly quit but they came out with new quests. This one doesn’t require any brain power or spreadsheets, and I just play it to see how the storyline is going.

I’ve been able to get on my computer quite a bit recently, though mostly at night so not when Sammie has been around much (though I did get to speak to her yesterday which was awesome). I’ve mostly been working on the spreadsheets but also played a bit of World of Warcraft. I did the first part of LFR on Danni yesterday, which was easy. I’m still too scared to do Heroic 5 man dungeons though, as I’ll be the only healer.

The last few days I’ve managed to watch a few Doctor Who episodes. The latest one was Time Travel Heist. It was good, and I’m liking Peter Calpaldi as The Doctor though not how he’s mean to Clara.

Now I’m sleepy tired so it’s time for me to come off my tablet and hopefully not have any nightmares. Mine have been including my pain in them and nightmares about being tortured aren’t fun.

 Posted by at 4:28 am
Jan 072015
 

Now is the time I make my resolutions and goals for the year. First of all though I look at last year’s resolutions and see how I did.

 

  1. Have a bath or a shower. – I managed this one! While I was in the care home in June I had a bath, and felt much cleaner afterwards. Definitely a success.
  2. Sort out health book/care plan. This one I didn’t manage completely. I got the most important bit done, a care sheet for the home care workers I have, but I’ve not done the full health book yet. I think I’ll be continuing this one.
  3. Be kind to others. I asked Johan, and he said I was kind to others. I also feel I was a lot less snappy at people last year, so I think this one was a success.
  4. Be kind to myself. I think I’m doing better on this one. It’s always going to be harder than being kind to others, but I think there was improvement here.

Not too bad overall. I also had a few goals- getting an iPad (I changed my mind on this one, as I now have a decent text to speech app for Android), trying to blog once a month (didn’t manage in September due to being ill), and getting out of bed again, which I did do a few times but nowhere near as much as I’d have liked. I had a Goodreads goal to read 50 books, of which I managed 46 I think (I can’t be sure as I can’t figure out how to see my own past challenges on Goodreads). That’s not too bad and I’m hoping to manage it this year. One goal I did manage to complete though was NaBloPoMo in November, which made me happy :)

So, resolutions for this year:

  1. Go to the toilet. This one might sound strange, but I’ve not been on a proper toilet for years. I’m doubly incontinent, but sometimes I can control things a bit. I would really like to go on an actual toilet at some point this year.
  2. Sort out getting the flat sorted. I’m not sure how this one is going to work yet, but it needs doing. If my bedroom, the hallway and the living room are all properly accessible to me in my wheelchair without having to move stuff around, then that will be a good indicator that the flat is getting sorted.
  3. Improve my eating. I’m not gaining weight and I need to. I’m also low on several vitamins and minerals. This one isn’t going to be easy, but I’m hoping that being referred back to the dietician and having more help from the carers when it comes to mealtimes this should be doable. Bonus points if Johan’s eating improves as well :)
  4. Finish the health book. I’ve now added this to HabitRPG so I have a daily reminder I need to do this. I’ve also got a working printer, and I’ve bought the last bit of stationery I need so I’m going to really give this a go.

All of them require help from other people, which will make things interesting. The one I can do mostly by myself is the health book, as I can type the pages on here and only need someone to fetch the printouts, the folder and the page protectors for me. I’m also making some goals (all except the reading one I’ve added to HabitRPG to make it easier to remember):

  • Read 50 books. I’ve been well enough to read now for a while, which is awesome. My Kindle Paperwhite makes it easy for me. If I manage this goal, I’ll reward myself with a new Kindle (the new version will make it even easier for me to turn the pages as I just touch the sides rather than the page bit itself).
  • Buy the daybed. Esther will feel loads better if she can sleep on something other than our old sofa. I’ll be able to go into the living room more. Win win. Just need to sort out collection of the old sofa (and the broken wheelchair, old bed frame and several boxes of junk) and actually buy it. I have found one I prefer to the Ikea one on eBay from a few different sellers, so that means I can buy it myself.
  • Get my pictures and posters on the wall. I’ve been wanting to get this done since I moved in, and it hasn’t happened yet. This year I intend to fix that. There’s a lot of them though so it’ll have to be done in bits :P
  • Play some of the games I already own but haven’t yet tried. I’ve got loads of games that look good on Steam and from Humble Bundles. I know I have limited and inconsistent time on the computer, but I’d like to try at least 5, more if I can. Some of them are for my tablet as well so I can try them even when I’m not on my computer.
  • Catch up with Doctor Who and My Little Pony. Very dependent on being well enough to watch television, but I’m hoping I can manage this.

Lots of things to be getting on with. If my health improves I obviously want to be getting out of bed more, but though it’s better than it was this time last year I know it can be very up and down. Three main symptoms are keeping me in bed- dizziness (which turns into fainting if I’m upright too long), muscle weakness, and muscle spasms (which have improved since I stopped pushing myself too much but still are a daily occurrence). Oversensitivity to everything (well, not everything but it feels like it at times) would need to improve for me to go further than the living room or the ramp outside, as the noise, light, smells and movement are too much otherwise. I’m hopeful though, and maybe seeing Professor Julia Newton will give me some answers.

 

 Posted by at 1:32 am
Jan 062015
 

A bit later than usual, but I enjoy doing this each year :)

1. What did you do in 2014 that you’d never done before?
I was hoisted into bath for the first time while in a care home :) Less never done before and more not done for a while, I managed to stand up and take three steps with my zimmer frame one day I had a lot less dizziness than normal :)

2. Did you keep your New Year’s Resolutions, and will you make more for next year?
I managed 3 and a bit. That’s not too bad going. I’ve got some new ones for this year I’ll be blogging about :(

3. Did anyone close to you give birth?
Yes! A few friends gave birth during 2014 :)

4. Did anyone close to you die?
No-one I was very close to died, but two friends from twitter did unexpectedly :(

5. What countries did you visit?
I went all way across the river Tyne to Newcastle for a hospital appointment! It was a massive adventure :P

6. What would you like to have in 2015 that you lacked in 2014?
Still want that hoist and shower chair :P The ability to go out without needing a stretcher would be nice.

7. What dates from 2014 will remain etched upon your memory, and why?
I saw Sammie three times! I can’t remember the exact date of the first two visits (silly memory) but the second was on Christmas Eve so I think I’ll be able to remember that. Speaking to her on Christmas Day and her birthday was awesome too :)

8. What was your biggest achievement of the year?
Standing up and walking three steps on the one good day I had all year :P

9. What was your biggest failure?
My health again.

10. Did you suffer illness or injury?
On top normal bedbound ME stuff, I had a pressure sore on my ear that took three months to disappear. That wasn’t fun.

11. What was the best thing someone bought you?
Everything that people bought me was amazing :) My favourite present (after seeing Sammie) was a purple penguin ornament she made me for Christmas :D

12. Whose behaviour merited celebration?
Johan was amazing as always. Sammie dealt with a difficult issue in a very mature way and I’m so proud of her for it.

13. Whose behaviour made you appalled and/or depressed?
The government trying to screw the lives of sick, disabled and poor people even more than they already have.

14. Where did most of your money go?
Food, bills, disability stuff. Being an adult sucks in some ways.

15. What did you get really, really, really excited about?
Sammie :) Talking to Sammie was amazing. Seeing Sammie was amazing. She is an amazing person. (Yes, this is a repeat from last year. Still true.) I also got excited about penguins :D

16. What songs will always remind of 2014?
Spread the Hope. You can listen to it or buy it: http://spreadthehope.christmas/. It’s for four good charities to help sick children :)

17. Compared to this time last year, are you:
a) happier or sadder?
Happier. Spoke to Sammie loads!
b) fatter or skinnier?
A bit skinnier. This gaining weight business isn’t going so well.
c) richer or poorer?
Hard to tell. Johan got PIP but that’s his income rather than mine.

18. What do you wish you’d done more of?
Having good days :P

19. What do you wish you’d done less of?
Relapsing. Getting pressure sores.

20. How do you plan to spend Christmas?
I spent most of Christmas talking to Sammie. Johan was the one sleeping all day :P I had a lovely dinner made by Esther and opened presents and it was good :D

21. Did you fall in love in 2014?
I got more penguins I loved :P I still very much love Johan and Sammie :)

22. How many one night stands?
None. I had a 10 second stand :P

23. What was your favourite TV programme?
Doctor Who and Great British Bake Off :)

24. Do you hate anyone now that you didn’t hate this time last year?
Still don’t hate anyone. I try to dislike actions rather than people. Like the actions of the government.

25. What was the best book you read?
Hyperbole and a Half by Allie Brosh :)

26. What was your greatest musical discovery?
Why so many questions on music? I need to get well enough to listen to some.

27. What did you want and get?
Lots of contact with Sammie :) I saw her three times and spoke to her loads on Skype (whenever I was well enough to go on the computer during the day, pretty much). I also got a new, bigger telly so I can see things on it properly :)

28. What did you want and not get?
My health to improve, and a hoist so I could get out of bed. (Same as last year then. That hoist would be really helpful…)

29. What was your favourite film of this year?
Despicable Me! Frozen was also good, and I liked Divergent (I think they’re the only films I actually watched, at least all the way through).

30. What did you do on your birthday?
Mostly slept. I got a McDonalds for tea, some awesome presents and Sammie sang to me on Skype, so it was a good day even though I was ill :)

31. What one thing would have made your year immeasurably more satisfying?
Being able to get out of bed and my health improving. I was still very happy though.

32. How would you describe your personal fashion concept in 2014?
Penguins and pyjamas. Sometimes even penguin pyjamas :P

33. What kept you sane?
Penguins, Johan, Sammie and friends :)

34. Which celebrity/public figure did you fancy the most?
I didn’t get any new crushes.

35. What political issue stirred you the most?
Welfare reform stuff again. All the different ways the government is screwing over poor and/or disabled people.

36. Who do you miss?
Sammie (though the extra contact makes it easier) and my friends and family.

37. Who was the best new person you met?
I met Sue, a friend from Twitter!

38. What was the best thing you ate?
Hard one. The pork pie from French Oven, the festive dinner at Christmas and the birthday McDonalds are all up there (I’m not a sophisticated eater at all :P ).

39. Tell us a valuable life lesson you learned in 2014?
Don’t get near a horny seal if you’re a penguin.

40. Quote a song lyric that sums up your year:
If you’re happy and you know it, flap your hands :D

 Posted by at 9:03 pm
Dec 252014
 

To all my readers and friends, Merry Christmas! Or if you celebrate something else or nothing at all, I hope you have a wonderful day!

I’ve had an awesome Christmas so far. Yesterday Sammie came over for a bit to pick up her presents, which meant real life hugs and squishes were had :D Best present ever!

Today I’ve been completely spoilt with masses of presents, from lots of family and friends. I’ve been unable to get all mine to others sorted in time for Christmas this year, but I’m hoping to get those I’ve missed within the next week or two. My favourite was a gift from Sammie- she made a ornament of us two as penguins, me being purple and her being pink, hugging each other. Me being a purple penguin and her being a pink penguin has been our thing now for many years, so it means a lot to me. She also got me new penguin bedding and a matching cushion which are super cute :D

Johan had bought me a telly for Christmas a few months ago, but surprised me with a Pingu ball (Hafu Pingu rather than telly Pingu), and Rarity, Rainbow Dash, Fluttershy and Twilight Sparkle soft toys. My sister Meggy had visited a few days ago and she gave me an amazing super soft penguin which I love to stroke. My other sister Becca gave me some awesome penguin pyjamas and penguin stickers. Esther gave me some penguin fuzzy socks (I love fuzzy socks!) and an awesome penguin Christmas jumper. Other presents included penguin stationery, a loom band penguin and money/gift cards. Very very spoilt Danni :D

I also saw my brother on Christmas Eve, which was a lovely surprise. I’ve spent most of the day on Skype with Sammie, sometimes playing Minecraft (with her and her friend), sometimes just talking. I’m so grateful that I’m well enough to speak to her, be on my computer, listen to a few Christmas carols and songs and hopefully later have Christmas dinner. I even managed to speak to my mum-in-law on the phone for a minute. Now is time to rest and hopefully I’ll continue to have a good day :D

 Posted by at 5:56 pm
Dec 092014
 

I’m frustrated. Mostly because of illness/disability stuff. And I don’t know how to deal with it. There are various things I’m frustrated about, but I don’t know how to deal with them without making myself more ill (I can explain the basics okay but going into the details is so draining I can’t just ask someone else to help). The frustration isn’t helping.

The kitchen is a pigsty. Again. I tried to investigate cleaners but I’m not up to contacting them and explaining everything that would need to be explained. The carers are limited in what they can do, and it’s back to the point they basically can’t do anything. Johan can’t do it due to executive functioning issues, and can’t ask anyone else to do it (or let me ask someone else to do it if I have a good day) due to anxiety issues. Esther has similar executive functioning issues to Johan and it isn’t fair to expect her to do it all anyway. So I’m stuck. I’m sure nice people would offer to call people for me but it took me 2 years to get a 2 page document to give to the carers written and printed so it’s highly unlikely I’ll be able to provide them with the information they need anytime soon. I want to just go in there and do it myself but that’s impossible from bed.

My bedroom needs tidying. I don’t have enough storage space for everything in here. Now I can ask the carers to help with this, but at the moment when they come I’m either asleep or feeling horrendous, and I don’t feel well enough to cope with the movement/noise until after 10pm. I might need to just suck it up and deal with the payback it’ll cause if they do it while I’m not really well enough as I’m meant to be going to the hospital on the 16th and I’ll need the room for the stretcher. But it takes so much energy dealing with the constant questions about where things go (which I mostly can’t answer because I can’t see if there’s room on the shelves or in the cupboard or anywhere else). Then it takes one day for there to be random stuff on the chair, wipes on the floor, I knock things off the bedside table, random bowls or plates to be left in here, toothpaste not taken back to the bathroom. No one is to blame but I can’t fix it, and I’m not well enough to ask anyone else.

I need to sort getting the sofa, broken wheelchair and boxes of electronics taken by the council. I nearly got the first part of this this done but needed to know how many boxes of stuff there are as they’ll only take what’s listed. Johan said he’d let me know but never did. The second part requires Johan to pay for them to be taken which I’m scared he won’t be able to do when it needs doing. At the moment there’s no way to automatically pay online, and I’d need the council to tell me how much it’ll be because there’s nothing on the price list for boxes of broken electronics and computer parts. With Johan not doing well we’re stuck and it means I can’t buy the daybed and they might refuse to put my hoist in there (and in here if my bedroom is still a mess).

We’ve heard nothing about Johan’s support. The last we got was a letter with a provisional budget and his statement of needs but it’s been silence since then. Neither of us are in a fit state to be chasing it up. The support for him would, in combination with my care being rearranged to work with it, solve most of the problems we’re having, as some of it is to communicate with other people for us. I basically can’t read letters on paper now without massive effort (the words fade in and out and the letters keep switching around – it’s better on a screen with larger text as they stay put more) and made myself stupidly weak just trying to read the DLA form that was meant to be in months ago. I want to fix things but I can’t.

I’m not asking for advice on how to solve the issues I’ve mentioned, just wanted to state some of the things I’m frustrated with. What I am asking is how can I cope with the frustration of things being wrong but not being able to fix them?

 Posted by at 3:12 am