Apr 102017
 

Bullet Point update cos easier:

  • I got my PIP award. Standard care, no mobility. I apparently only need aids and adaptations (not carers), as I can type on my tablet. I have no communication difficulties despite being non-verbal during the assessment. I can somehow walk more than 50 metres (but less than 200) despite not being able to sit upright or stand, due to being able to lift my legs from the bed once while lying down. We asked for a reconsideration, they said it was right. We’re going to go to tribunal but I’m not sure when that’ll be. I’m not surprised, and I’m glad I get enough that Johan still can get carers allowance in the meantime (as getting nothing would have messed everything up due to the way our finances work), but it’s a bit ridiculous really. The report was full of lies, and they’ve still not told me how I’m meant to walk without standing as I really want to know so I can get out of bed by myself!
  • New care agency has been sorted, and started. It’s so much better than the old one. It’s weird having two carer workers on an evening, but unless it’s a task requiring two people (basically hoisting) normally one does stuff in another room while the other does my personal care. Other than asking for one particular care worker not to come unless it’s an emergency (she’s not bad, just not really suited to me), I’ve been getting on with everyone fine, and I have a pair who are probably my favourites that I see several times a week. I also get rotas which makes things much easier, and the lunchtime call means Johan worries about me less when at his day service. It’s already saved him having to come home at least once 😛
  • We got the new day bed! Only problem is it’s a bit low down so need to find the elephant feet for it (I have some in the flat somewhere, just not sure where). I’ve been in the living room a few times, but not as frequently as I’d like for various reasons.
  • We had a power cut. I managed to report it online (I have backup internet through my phone for these occasions). My normal bed wasn’t flat but the hoists are battery powered and the new day bed is, so Johan took me into the living room when we were told it was going to be a few hours to fix it. I ended up spending the night in there.
  • Power cut told us our burglar alarm (which we don’t know how to use) is broken. When the power came back on it kept going off and it wouldn’t accept the code (the only bit of information we have about the alarm). Housing repair person came out and fixed it, then said we need to ask for a new battery. Due to the lack of people turning up to fit a new battery, I think Johan has forgotten to ask for it.
  • I survived the noise due to new earphones I bought. They’re Bose QC20s and the noise cancelling is amazing. For most noises it’s better even than the earplug/ear defender combo, and I can put ear defenders on top. Definitely not cheap at all, but considering how noise sensitive I am, definitely worth the price.
  • I’ve been out once so far this year, at the end of February. I tried to find a suitable hat, failed, but did find a visor. Bought that instead, then had dinner with Johan. Was nice, though noisy. Hoping to repeat it at some point.
  • No showers yet. Felt up to it a couple of times, but Johan wasn’t available. I’m really hoping it’ll be soon.
  • Two hair washes so far. One at the beginning of February, one last week. Had to explain to new care worker that I don’t need anti dandruff shampoo, the dry skin is just because I don’t get it washed or brushed very often.
  • Upstairs neighbours are no longer there. The circumstances were very much not good, but I’m grateful that I don’t have to listen to the arguing, music and noise anymore. They seem to be clearing the flat out today.
  • Brain is still refusing to work properly. Making silly mistakes when trying to do online shopping, and needing Johan to help me with online forms. It’s very frustrating as I used to be good at that stuff.
  • My body is still evil. I sleep a lot. I need a lot of cyclizine. Nothing much has changed there.

Games stuff separate as only I’m interested:

  • When I can get on puter, I’m playing WoW still. Loving the patch 7.2 stuff, though annoyed I miss invasions, buildings being up and stuff. Finally ran my first heroic this morning, and only only one other person died (I missed a mechanic that one shot me due to not having done the dungeon before). Maybe I’ll get those quests I’ve had for months done at some point.
  • I’ve stopped playing a lot of my mobile games as wasn’t enjoying them as much. Picked up a few replacements. Mostly playing 1010!, Fishdom, Godville, I Love Hue and Neko Atsume. Godville is the best as it’s a zero player game so I don’t need to do anything if I don’t want to (though I can do stuff to try and influence my heroine if I want). Also playing Word Cookies but Johan is so much better than me, and it overheats my tablet so it turns off.
  • I played a bit of Stardew Valley on puter, but put it on hold again until I’m caught up a bit with WoW stuff. It’s fun but I had to use a mod to make fishing much easier as it was impossible before.
  • I miss playing any first person games. I really hope they stop making me dizzy soon.
 Posted by at 10:00 am
Nov 122016
 

Physically I have got better. Cognitively I have got worse. This is not unexpected but very annoying. I am struggling to understand even simple things like my bank account and emails.

Because of this, Johan is now my Appointee when it comes to the DWP. This means he’s responsible for contacting them, filling in forms, and my money now goes into his account (which he then sends to mine because the bills come out of it, but when we’re able he’s going to be added to my account so he can manage it as well). We were worried that they’d say I didn’t need an appointee but instead they asked why it had taken so long. It was very hard for me to admit that I needed that help, and as soon as I’m consistently well enough to manage it Johan is going to hand control back to me.

Johan had his PIP renewal. We were a bit scared as it was only a 6 page “has anything changed” form and then we didn’t hear anything for weeks, but it’s been renewed again at the same rates so we don’t need to worry for now. My DLA to PIP transfer is in progress- we’ve now got the form that Johan needs to fill in. He says it’ll be easier than filling in his own, and he even managed the phone call to initiate it okay. We’re going for our usual tactic of sending tons of supporting evidence (mostly my care plans, where it says they’ll find me in bed both calls) and hope it goes smoothly.

As I’ve been doing better physically I have been out of bed a bit. I’ve been in the living room and to Newcastle (I went to the yarn shop! I bought yarn!). I saw Snow Dogs and they are awesome. I also went to the local park for the fireworks display and it was good, though people kept climbing over me while we were in the queue for food (we think they didn’t realise how long the chair was so thought there was a gap when there wasn’t). I wore my penguin onesie and was nice and warm. I’m definitely glad I managed to go, and hope to go next year. We’re planning on putting lights on my chair and skipping the food queues though 🙂

I have a shower chair now so I’ve had two showers! Showers take a lot out of me and the chair isn’t quite supportive or padded enough but person from CFS team has suggested using towels to make it better and we’re going to try that. I am so glad that it’s here now though. The main thing stopping me using it is not being awake and well enough at the same time Johan is available to shower me.

Last week we finally got my new hoist slings with head support. I’ve tried them and they make it so much easier and mean my head no longer flops backwards and my neck doesn’t get sore! We’re not sure if one will fit in my normal going out changing bag, but if not I’ll just get a bigger one.

I saw mental health team. They can’t help me because I’m not at high enough risk. Blegh. I’m both glad that I’m not that ill mentally, and frustrated that they couldn’t help even with suggestions. Last night fireworks going off made me really out of it, but I was also able to describe what was going on to Johan (he was with me at the time). I think it’s the first time I’ve been able to do that, explain what’s going on in my brain while it’s happening, but I don’t know how to stop it and I was exhausted afterwards and slept all night then all day. That was not in the plan.

I went to the local hospital for a smear test and coil change. Was funny the first time I went as they didn’t know I’d be in a stretcher, most of the information they had was wrong, and they didn’t know where to put me. They figured it out though (they had a second waiting room that had a curtained off bit- they put me there with a guard nurse at the door) and the doctor took my smear. I went back a few weeks later for the smear to be repeated as the first one didn’t have enough cells, and this time the doctor changed my coil as well as he didn’t want me having to go back there again. The second time they had two rooms ready for me- one in case I could stay on the stretcher like the first time, and since I couldn’t (the ambulance guys needed it for other people) they kicked a doctor out of his office so I could go on the only bed in the department that lies flat. It wasn’t exactly fun, but the coil change went about as well as it could have and I was in less pain than the day before, so I appreciate that. My second smear came back normal so I don’t need to worry for 3 years now, and 5 years for the coil. I’ve been a bit crampy and moody since but hopefully that’ll calm down in the next few weeks.

I have a hospital appointment at the beginning of December about my dental surgery. It’s going to be at a further away hospital, which will be the furthest I’ve travelled in over 4 years. Hopefully it won’t take too much longer after that to have my broken teeth removed- one of them has had a temporary filling in for over a year.

I’ve been playing a lot of World of Warcraft since Legion came out. I’ve done all the current quest lines, got all three artifacts for my Priest, and am concentrating on levelling my Discipline one. I’m okay doing most World Quests, LFR and normal dungeons. I’m too scared to try heroic or mythic dungeons yet, though since I have a 853 item level I am geared enough. Part of the problem is that I don’t really know how to heal with the new Disc system- in LFR it doesn’t matter too much if I’m not sure what I’m doing as there are other healers, but in a dungeon I’m the only one. I’m considering learning Holy for it, but I think I need my brain to work better first. WoW is a lot of fun though, and I’m glad I’m able to spend a decent amount of time in it (mostly at night while Johan is asleep).

The biggest problem my cognitive issues is causing is I can’t initiate conversation now. I can know what I need to say and who I need to say it to, but without a prompt I just can’t do it, and I don’t know how to explain that. Replying to someone is easier but still really difficult, especially if I don’t know the person that well. I’m also muddling up or forgetting words and stuff much more these days, which if nothing else gives Johan something to laugh at (as he hears most of them). It’s so frustrating needing to do something but not actually being able to do it, even though I technically know how.

Johan is now very busy. He’s in Newcastle 3-4 times a week now, and he’s taken up running so does the 5k park runs most Saturday mornings, and goes to the gym when he can to do more running. If I’m asleep at the wrong times, I sometimes don’t see him for more than a few minutes while he sorts me out in between stuff and sleeping. Both the exercise and being out regularly is helping him a lot, and what he’s doing now might lead to a career in the future. I struggle quite a bit if I’m awake while he’s out, but it’s mostly feeling vulnerable- if something happens, I can’t do anything about it. It also means my pads leak more which isn’t fun. We’ve asked our social worker to change the call times so I’m not left alone for quite as long (the morning call moved to lunchtime so Johan can sort me out before he leaves then the carer can sort me out a few hours later) and also for the evening call to be made much later so I don’t need to cancel it whenever I’m able to go out. He’s put the request in but I don’t know how long it’ll take.

The agency finally stopped trying to send the bad carer in October. It took my social worker putting it in the contract not to send her before they’d stop. I’ve had several carers say they’d happily do those calls if asked, so it’s not that no-one wants to deal with me, but they kept insisting she was the only person available. I’ve still not heard anything about my official complaint (that I put in during July) so once everything else has calmed down we’ve got that to chase up. It’s the usual problems we’re having with the care agency now- most of the carers are lovely and do their best, but there’s a complete lack of organisation and communication, and I still don’t get rotas so get panicky every weekend as I don’t know who’s coming.

At some point I need to see my GP as my antiemetic has started causing tachycardia and palpitations, which stops me sleeping and is very uncomfortable. I can reduce my heart rate manually for a bit (by holding my breath and tensing my muscles- I discovered it myself years ago when I thought I was panicking but was actually having POTS attacks, and it turns out it’s an actual treatment) but it eventually goes back up and the palpitations stay. I’ve been on it for several years without problem so I’m really annoyed this has started now, as it was the third one I tried and I really like not vomiting. Hopefully we can fit it in around Johan being out all the time.

I’ve now written a blog post that’s too long for me to read. That’s probably a sign I should publish it. Hopefully there aren’t any massive mistakes in it.

 Posted by at 7:12 am
Aug 262016
 

It’s been a busy couple of months. I currently have an actual social worker, and he sorted out a care home (which went well) and is helping to try and sort out the care agency problems I’m having. They’re still sending that particular care worker that I can’t cope with, so I’m now panicking a lot and not having stuff I need doing done. My main care workers have complained, I put in an official complaint (which I’ve heard nothing about) and my social worker has complained, but they keep sending her. I’m not sure what to do as I’m spending all my energy on panicking instead of useful or fun stuff.

Johan went to Sweden and he had a very good time. I went into the care home I requested (as the previous one couldn’t take me due to renovation work) and though there were a few communication issues overall it went about as well as it could. I even managed two baths which was amazing! I managed to make a pair of slipper socks while in there, watched the ESA Marathon that Johan was in Sweden for, and went to a open day for the floor upstairs from where I was staying and stole two helium balloons. I also slept a lot and had to reassure the staff that was normal.

Since then I managed to go out for my sister’s birthday, which was the same day as our 6th wedding anniversary. We went for a meal in Newcastle which was nice. I had Chinese starters and a couple of desserts as I was too slow and full for a main 🙂 It’s the first family event I’ve managed to make in a long time so I’m really happy I was able to go out for it.

I bought a Haribo cake for our anniversary, which we started yesterday. It is rather yummy and doesn’t have icing on that Johan doesn’t like, but does have sweets on top. Haribo Starmix are Johan’s favourite sweets at the moment, so it works well for both of us. 

Since I got home from the care home I’ve seen my social worker again, and have got dates for changing my coil and seeing the community mental health team. For the CMHT I got a bit worried when they said it was in a clinic, as I wasn’t sure I could manage talking for an hour and a half at the same time as sitting up (both use energy and mine is limited). Luckily they phoned Johan and told us that it was going to be at home so I don’t need to worry about not fainting in my chair, just on being able to manage an assessment for 90 minutes. I’m hoping they have some ideas on how to cope with stuff that affects me but I have no control over, because panicking and having meltdowns (they’re different) are both extremely exhausting even when you don’t have a chronic illness. 

The best thing that’s happened this month is seeing Sammie today 🙂 She came over to bring me presents from her holiday and chatting to her is amazing, as is being able to cuddle her in real life. I’m so proud of how she’s doing so well. Johan worries about her, especially when she stays up past her bedtime. It’s quite funny how he’ll keep reminding us what time it is. She’s still growing and is visibly taller than Johan now. I don’t think it’ll be too much longer before she’s taller than me.

I enjoyed watching the Olympics when it was on. I mostly saw some of the artistic gymnastics as I wasn’t well enough to watch all I wanted to see, and I was really impressed by Simone Biles and how she flies through the air. I’m looking forward to the Paralympics and hoping to watch a lot of that. Just need to have the energy to manage it.

When I get on my computer I’m mostly playing World of Warcraft. I’ve pre-ordered the Collector’s Edition of Legion, and if I’m going to be awake and well enough for launch I’ll get the digital version so I can play immediately, but if I’m not I’ll wait until the box arrives. I’ve been enjoying doing the prelaunch invasions and quests, and hopefully I’ll figure out how to DPS heal as a discipline priest before I get too far in. Johan has been levelling loads of characters through invasions and he’s not sure which one will be his main, or his first to level 110.

On my tablet I’m mostly playing Minesweeper. It’s slower and a bit harder than on PC as you don’t have separate buttons for flagging and uncovering, but I’ve managed to get under 200 seconds on expert which makes me happy. I’m still playing most of my other mobile games but only in bits and pieces. I’m also reading a lot of Reddit when I’m not feeling up to much, as it doesn’t matter if I lose track of what I’m doing. I hope to get back to reading books when things calm down. I’m still happy though, and have many plans that I’m working on 🙂

 Posted by at 10:40 pm
Apr 232016
 

The problem with sleeping a lot and randomly is that time somehow disappears so one day it’s February and then suddenly it’s the middle of April.

I’ve been very up and down the last few weeks. Still got issues with the care agency. ESA form is in so I’m waiting to hear if I’m still in the support group, and if so for how long. Some time spent on my computer but nowhere near as much as I’d like, and not at all for about two weeks until this week. I’ve not been in my chair much either, though did go into the living room for a bit and outside for 5 minutes to try and spot the International Space Station (and failed due to clouds) at the beginning of the month. I’m hoping to be able to go properly out again soon. Esther has moved out, as our flat was just too small for the three of us, especially with my health being affected by everything (she was a great flatmate, and her new place is better for work so I’m hoping it goes well for her).

Easter was good. Eggs and bunnies were bought and eaten. I managed to watch the church service on the telly which was awesome as I miss going to church. I’ve looked into inclusive church services that happen at a time that I can actually get to them (there’s no chance of me getting anywhere for 10am, especially on a Sunday) and I’ve found one that looks really promising, so when I have the spoons I’m hoping to email them about the stuff I need to know (how accessible is it, whether there’s a set routine or service I can learn and follow, how noisy it gets). Emails are hard even when I know what I want to say.

April is also autism awareness/acceptance month. I’ve done pretty much nothing for it, other than speak to my GP for help with my anxiety and ways of coping before I end up in meltdown (unfortunately happening all too regularly due to care agency stuff, like being yelled at by a care worker, or someone I don’t know letting themselves into our flat and into my bedroom with no notice, name or ID- the first I knew of it was when I rolled over and she was there, as I had earplugs in). I think this was the first time I’d told a doctor about my meltdowns, as when they happened once a year it wasn’t that important for them to know. It’s also in my care plan now, along with what to do (leave me alone and if Johan is in, get him- it might be scary seeing me hit or bite myself but I’m not likely to hurt myself too badly and the worst thing you can do is talk to me or try and touch me). Unfortunately most of my coping/prevention methods involve things I can’t do due to being so ill with ME, so I’m not sure what to do, especially when our ways of trying to prevent them (like telling the care agency not to use the key safe except for care calls, and to contact us in advance before turning up) are being ignored.

My GP was awesome as always. She seemed to understand that a meltdown is different from a panic attack (though I still get plenty of them, normally at night when the neighbours are arguing). She’s not got many ideas yet, but she’s going to see if there’s someone who understands autism who may be able to help me come up with some coping strategies. I don’t get why I’m so nervous about seeing her when she’s always so nice and tries to help, even though I’m not the easiest person in the world to deal with (yay neurological illness with no currently known effective treatment and communication difficulties due to autism!). She even sorted out an antihistamine prescription for Johan even though it was my appointment.

I’m still getting used to the side effects of cetirizine I’m taking for hay fever (even though there are no leaves on my tree yet there’s definitely pollen around). Mostly extra drowsiness and dopiness, though it might also be why I’m getting worse headaches than normal. Luckily it’s nothing that I can’t cope with and it’s worth it so my eyes aren’t as sore and itchy.

I got selected from the waitlist to buy Here Active Listening ear buds. They work well for what I want them for (turn down certain noises while still being able to hear what I want, such as turning down background noise while still being able to hear speech) but only when I can actually get them working with my tablet. Unfortunately the left one doesn’t seem to like turning on every time and I’ve had difficulties getting it to connect to my bluetooth, but I’m hoping that it’s just teething issues and they’ll work better soon.

I’ve also recently updated my tablet to Android Marshmallow from Lollipop. While doing so I took the time to encrypt it, so it’s now more secure (though I’ve also turned on smart lock so when I’m at home with it then it’ll automatically stay unlocked, as typing in the password every time would be too much for me). The only bug I’ve found is that the IR Blaster doesn’t seem to be working, which means I can no longer control my telly from my tablet. When I’m not able to press the buttons on the remote myself I’m needing Johan to do it for me. Hopefully that’ll be fixed soon, or I’ll have to look into a touchscreen remote control.

I’m getting excited for Overwatch coming out next month. I’m hoping I’ll be able to get on my computer to play it, as I preordered it. I’m probably going to be terrible but it looks fun anyhow. Today I managed to get my Diablo Wizard to level 70, which only took a couple of years. Hopefully I won’t take as long with my next character 😛

I’ve been enjoying watching the Penguin Cam at Edinburgh Zoo, which shows the gentoo penguins and their stone nests. Watching the penguins mate has been interesting, especially as they keep being interrupted by other penguins wanting to steal their stones while they’re doing so. There are quite a few eggs now and hopefully in the next month or so there will be some chicks. Until then there’s lots of stone stealing from nests, and occasionally the king penguins invade, especially at feeding time.

 Posted by at 12:54 pm
Jan 272016
 

A quick blog post as I want to blog at least monthly, but this month I’ve not been well even for me. January relapses are normal but this one is lasting longer than I’m used to.

I have a cold. I’ve had it now for several weeks, might now be months. I’m sleeping a lot, though my FitBit is telling me that I’m getting a lot less sleep than I realised (will sleep for a 13 hour period but only actually get 8 hours of sleep in that time, as I’m waking up so much due to pain/not being able to breathe/nightmares). I’m very lucky if I manage mood than an hour of uninterrupted sleep a day. I don’t even remember what a sleeping pattern is.

I’ve managed to go on my computer twice, which is less than normal for me. There are some things I can only do on my computer so I’m frustrated but pushing myself results in being worse. I spent 15 minutes in my chair at the beginning of the month to have my sheet changed but haven’t been well enough to go back in it. That small amount of extra dizziness, pain and exhaustion makes such a difference in what I can do. Anxiety because the care agency still isn’t doing what I need them to doesn’t help.

Good news is Johan almost has a passport. He went for the interview on his birthday and it went well so he’s just waiting for it to arrive. It’s awesome seeing him so excited. He’s planning on going to Sweden in the summer to play games very fast and see friends who also like playing games very fast. When my body has been behaving enough I’ve been eating the goodies we were given for Christmas. Gingerbread penguins and posh fudge are very nice, and not too bad when they reappear multiple times 😛 I’ve also had McDonalds which I caused me less pain than most other foods, because my body is weird (only the lettuce caused issues).

I’ve got so many plans for when I next go on puter and go out. Taking my Deed Poll to the bank to get my name changed, and sending it to the people we’ve not managed to contact yet. Playing World of Warcraft. Talking to Sammie (I miss her the most when too ill to talk). Going for a meal with Johan for his birthday (he went out by himself but it’s not the same). Hopefully writing letters/emails, though they take more cognitive energy than I’ve had for a while. Having proper cuddles. I’m hoping this cold will be over soon, or at least I’ll have another slightly better day so I can manage something. I’m sure it’ll happen 🙂

I’ve been so grateful for my friends the last few weeks. Sending me penguins (especially for Penguin Awareness Day). Giving me (online) Squishes. Being understanding when I disappear from Twitter and Facebook for a bit. My cousin Elka linked me a penguin shirt that had a picture of a penguin made up of lots of little penguins, and I bought that and it arrived yesterday. I can’t wait to be well enough to get changed into it. It’s purple and long sleeved and awesome.

This ended up longer than I expected. Brain dumps are definitely the easiest form of communication. Time to go back to sleep and hopefully stay asleep this time. I can hope 🙂

 Posted by at 8:44 am
Nov 252015
 

Watched Doctor Who with Esther. Too many feels. Argh that episode. *Sniff*

Anxiety is still bad but I managed to let the carers help me a bit today. I know what my brain is telling me is completely irrational but it’s hard to argue with your own brain. I went on my computer and managed to organise some tickets to see the Enchanted Park next month, even sending emails to sort out a carer ticket and why mine was broken. Also played some World of Warcraft where the guild boosted me through heroic Archimonde so I’ll be able to get a moose mount. Thank you Trivial 🙂

Also tried the Tavern Brawl in Hearthstone with Sammie. She was winning then I got a great set of cards which changed it so I won. Hopefully we’ll get another game in before it finishes.

Got out of bed while evening carer was here so my bedding could be changed. It was nice 🙂 Johan gave me hugs from behind. Stayed in my chair for about an hour.

Digestive system is now being very mean to me so I’m gonna curl up in a ball and ask for penguins to be heated. That seems like a good idea. If anyone knows how to make a brain stop telling me I’m evil, please let me know.

 Posted by at 11:57 pm

Tablet Trouble

 Computers, Danni, M.E., NaBloPoMo, Physical Disability, Real Life  Comments Off on Tablet Trouble
Nov 162015
 

Been awake since last night so very tired. Morning carer didn’t come into the flat (door was unlocked and she’s meant to have keys anyway) so didn’t have a care call this morning. Johan had just got out of the shower so couldn’t get the door when she knocked on the door. We thought it it must have been for another flat or something.

Managed to soft brick my tablet trying to install a new rom. It was stuck in a boot loop and I couldn’t even get into recovery so had to go on puter for a bit to fix it. Sorted now but I hope not to do that again any time soon. Once I’ve finished configuring my apps again I’m going to take a backup and try not to break recovery so I can use it if I need to. I’m still pretty pleased I was able to fix it without Johan’s help.

I had buttered toast this morning that tasted so good. I think I need to convince Johan he’s good at it so he’ll make me more 🙂 I’ve had too much fruit and veg the last few days so my digestive system has been more painful and bloaty than normal for me. One day I’ll learn they’re bad for Danni’s in anything other than small portions. They stay in my stomach longer than pretty much anything else as well.

Hopefully staying awake until 8pm will fix my sleeping pattern. I hope so as I’ve got stuff I want to do. If not then I at least hope I’ll be awake on Friday.

 Posted by at 7:57 pm
Nov 102015
 

Since the care worker came on Sunday morning making me panic, I’ve been unable to speak (I regained it for a little bit during the early hours of Monday morning, but lost it again a few hours later when I struggled to wake Johan up to help me with various things). To make things more complicated, my hands are being silly so I’m not able to type as accurately as normal on my tablet, so it’s taking me a lot longer to say things using it than is normal for me (which is why I’m using the laptop to type this, as my touch typing still seems to be working). I’m also still panicking whenever I’m awake for a care call as I don’t know when or who it’ll be. This is not a good combination.

When I’m talking to Johan I’m using a lot of body language to communicate: nodding, shaking my head, shrugging my shoulders, using fingers for numbers or to select from options when Johan forgets to ask me a closed question. It’s definitely the fastest way to communicate at the moment. I also use a lot of gestures and made up signs to help express what I want, along with exaggerated facial expressions (Johan is more able to read mine than most people, but making them bigger means he’s unlikely to miss them or misinterpret them). We’re able to hold entire conversations this way, which is great when I’m not feeling up to using my tablet (such as when I’m very tired).

It’s less good when I need to communicate with someone else. The district nurse came this morning and Johan had to answer most of the questions for me, as it was taking me a very long time to type responses. That’s fine when he knows the answer (and to be fair he knows most of them) but he’s only human and he sometimes forgets important points or I need to bring up something else. I was often saying something as a response to a topic that ended a couple of minutes before, which made me feel awkward. It wasn’t horrendous, but it would have been a lot easier if I’d been able to speak at the time. The nurse was also using that patronising voice I hate, like I was a young child. I’ve noticed it’s used a lot more often when I can’t speak than when I can.

For the care workers it’s harder. Not only do I have to communicate, but I also have to cope with someone being in my personal space and touching me. Johan finds it very hard to cope with the calls and normally hides in his room, but I need him to interpret for me so he has to stay in here (I don’t get the choice of hiding if I want anything done). Yesterday morning he had his day service and the care worker was running so late we had to cancel the call as he needed to leave and there was no way I’d be able to communicate with them when they got here. I was asleep yesterday evening and this morning the care worker was incredibly loud, so I immediately panicked so wasn’t able to have anything done. You’d think that they’d know not to come into someone’s home yelling, but apparently not.

I don’t really know a solution. I can’t use my laptop all the time as it limits me to being on my back and eventually the weight becomes too much. I’m also yet to find a text to speech communication app that works with Chrome OS. I’ll still use the app on my tablet, but I’m constantly mistapping so I can’t set it to automatically speak when I select a button as I keep hitting the wrong one (or hitting them when I’m wanting to type something new). Yesterday one of the suggestions was dysmenorrhea when I was trying to type doing for an example of how bad my typing on there is right now.

In general I’m not coping very well right now. Very anxious, panicky and getting twisted thoughts that aren’t true but feel like they are. My mood has also plummeted and even penguins aren’t cheering me up. Johan is hoping this is temporary, maybe because I’m due a period, and I’m kinda hoping the same. It might be just down to the care situation though, in which case I’ll hopefully feel better once that’s sorted. I’m also in desperate need of sleep because I can’t manage at night because of the paranoia (if I close my eyes my brain makes me think someone is breaking in) and stuff happens during the day to wake me up. That’s probably also not helping. Physically I’m also doing worse than I have for a while, but that’s probably because of everything else. I hope things get sorted soon.

 Posted by at 3:41 pm
Nov 082015
 

Well, maybe not but it does make me feel better.

I had the worst care call with this agency so far this morning. The care worker scheduled to come for my call phoned in sick, and as they’re understaffed the supervisor on call came to do my call. She was incredibly loud, and worse than that had her phone ringtone set really high so every time it went off I felt really ill. And it went off several times. I was hoping to have my teeth brushed and was considering asking for breakfast, but the phone going off so many times so loud right next to me meant I lost speech and panicked completely, so Johan had to ask her to leave. Due to the panic attack I ended up sleeping most of the day. I understand she needed to be contactable but after the first couple of times of me showing obvious signs of distress (hands covering ears, face scrunched up, curling up into a ball) I would have thought she’d have at least turned it down, but nope. And she’s meant to be one of the more senior members of staff.

This evening’s call was much better. A new care worker, but she actually read the sign on my door and was quiet. Johan helped explain what to do as I still couldn’t speak and was still rather anxious, but she listened and did what was needed. We’ve asked her to tell the agency we like her so we want her more often. She was surprised at how many different people I’ve had coming for my calls (apparently you’re not meant to get more than three different care workers a week- I’m getting at least 7) so understood why I wasn’t coping. She’s also going to ask for a rota for me as even just knowing who’s coming and when will be easier.

I’ve spent most of the evening playing games on my tablet and reading What If? by Randell Monroe. I’d bought the book for Sammie last year and she was really surprised when I told her last week that I’d not read it yet, so I bought the Kindle version for me. I’ve read the blog but it’s nice to have them all together, and I’ve seen a couple of questions I’d not read before. My laughing at the book made Johan interested, so now he’s reading it as well on his iPad. I had cheesy chips for tea which I’d been craving for a while.

Johan made me a cup of tea this evening! I’m not 100% sure, but I think it’s the first time he’s ever made me one. He’s made me hot chocolate a couple of times before, but he’s scared of normal kettles so it was a special thing. He’s not as scared of the new one cup kettle though so hopefully I’ll be able to have tea more often. Unfortunately the milk we had was bitty (the use by date was tomorrow so we thought it’d be okay) so he had to use the UHT milk I keep in for porridge but even with that it was lovely and made me feel better 🙂

I’ve got loads of Blizzcon panels and eSports to catch up with, but I’m taking a break today as I’m not feeling up to it after this morning. Hopefully I’ll get through them the next few days. I’m glad I saw the World of Warcraft Q&A yesterday, as they were the best questions asked so far, and Red Shirt Guy was first again! Finding out they’re just letting us switch specs whenever we like rather than having to choose two out of three (or four if you’re a druid) made me really happy. Johan and I both want to play more Heroes of the Storm when I’m up to it as it’s loads of fun.

I’ve got nothing particularly planned this coming week other than the CFS team coming out on Thursday. It’ll be the first time I’ve seen them since I got the hoist so it’ll be good to see if they can help me plan how I’m going to get out of bed more without risking going backwards. It would be easier though if I wasn’t so anxious from the care agency though as it takes so much energy I’d rather be using on things like getting up more or being on my computer. If it carries on much longer I might have to ask about going on direct payments now the council is able to manage them for me (which wasn’t available the last time I tried it). Hopefully there’s an agency in the area that can meet my needs as I just need consistency, communication and a bit of understanding of how things affect me.

 Posted by at 11:57 pm
Nov 052015
 

Today is Guy Fawkes’s Day, where the entire country sets off fireworks and sets effigies of the Prime Minister with a pig on fire (okay, the last one might just be Brighton). I managed to go out on the ramp and see the higher fireworks from the official display at Saltwell Park, as Johan was raiding and we weren’t sure how we’d get down there if I went in my chair.

Blizzcon Goodie Bag contents: Messenger Bag, Psi Blade, Overwatch decal, Hearthstone luggage tag, Illidan badge pin, ETC model thingie, and a Diablo keyring.

Blizzcon Goodie Bag contents: Messenger Bag, Psi Blade, Overwatch decal, Hearthstone luggage tag, Illidan badge pin, ETC model thingie, and a Diablo keyring.

My Blizzcon goody bag arrived this morning and I am happy with it. Johan had already told me he was stealing the bag, but I get to keep the rest of the items including the Psi Blade. I have whacked Johan over the head with it as that’s what penguins do 😛 (He is okay with this as it didn’t hurt). I’ll probably attach the Diablo keyring and Illidan badge to my Trabasack. I’m really excited for Blizzcon!

Johan decided he needed a laptop for going to the day service he goes to (as nearly everything he does is computer based and there aren’t enough computers) so he bought a Chromebook today. I agreed to pay for half if I’m allowed to use it for blog posts and stuff when I’m in my chair, and he agreed so I’m typing this on the new Chromebook 🙂 Johan put the Overwatch decal I got in the Blizzcon bag on the laptop which looks awesome 😀

I found it funny that I got into my chair at 6.30pm and managed fine, including watching fireworks outside (with music and ear defenders), watching telly and being hoisted back into bed after 10pm, but taking my hoodie off while lying down made me feel really dizzy and ill. My body makes no sense to me. I hope to figure it out at some point 😛

Tomorrow is the start of Blizzcon so my plan is to change my sleeping pattern to fit it. Whether that works or not I don’t know 😛 Until then, I guess I’ll hang out and bed as normal 🙂

 Posted by at 11:45 pm