Week 25 Review

Forgot to take a photo again this week. I blame brain fog.

Monday was my 32nd birthday. Slept through most of it, but did get to open cards and presents which were lovely. I’m incredibly lucky to have such awesome friends when I’m such a terrible one. Sammie got me an emperor penguin ornament which is two adults and a chick, which is meant to be Johan, me and Sammie (though Sammie is now significantly taller than Johan, she says it’s a younger Sammie). I also got presents and cards from my family. I’m so spoilt.

Johan has promised to get me cake from one of the many cake delivery places, but I’ve not been well enough to get it yet. Hopefully it’ll be soon. He did say on Sunday he was happy I could now hold a conversation for more than 5 minutes.

When I wasn’t sleeping, I watched quite a few things on the telly. Some of the England match on my birthday and other world cup matches during the week, YouTube videos, and finally watched the first episode of series 10. This payback has been mostly physical, and though I was still very brainfoggy I was able to figure out scores and what happened in Doctor Who with the help of reading a recap. Moving is still a bad idea though, and my hips are very sore from lying on them (as I need to be on my side to sleep or I can’t breathe). Hopefully it won’t be long before I can get out of bed and test out my repaired wheelchair.

  • Overall mood – Awesome for Monday and Tuesday, good the rest of the week. High symptoms due to shower.
  • Average daily sleep – 9 hours 37 minutes
  • Longest sleep – 17 hours 8 minutes from Wednesday morning to Wednesday evening (deep sleep 59%)
  • Clothes changed – 1 (Penguin made of penguins top)
  • Wipe wash – 1
  • Water wash – 0
  • Hair wash – 0
  • Books read – 1 (Dear Chronic Illness
  • TV watched – 4 world cup matches (Tunisia vs England, Germany vs Sweden, England vs Panama and Japan vs Senegal), Doctor Who Series 10 Episode 1
  • YouTube videos watched – Mr Puzzle, Tom Scott, Jessica Out of the Closet, vlogbrothers, totalbiscuit (Genna), Genna Bain (old content), floppotron, scishow (I watched a lot of YouTube this week)
  • Streams watched – Train journey from Aberdeen to Penzance
  • Music listened to – 0
  • Podcasts listened to – 0
  • Blog posts written – 0 (due to brainfog – watching stuff was easier than writing stuff)
  • Penguins cuddled – Lots 🐧🐧🐧
  • Johan hand holds – Multiple
  • Johan hugs – 0
  • Time on Twitter – 1 hours 41 minutes (average 14 minutes a day – was reading but not tweeting much)
  • Time on Reddit – 18 hours 1 minute (average 2 hours 34 minute a day)
  • Time on Facebook – 3 minutes (on Sunday – wasn’t on otherwise)
  • Other –
    • Was weird week with being okay with watching stuff, but not moving. Football is good because the score stays on the screen.
    • Workmen installed a new metal lamppost outside my window. I think something went wrong as while Johan was watching the council workmen digging up the path, there was a massive spark, our lights dimmed and the council workmen were replaced by Northern Powergrid.
    • Was doing not too bad on Thursday until more workmen came, used power tools and I couldn’t get my headphones on quick enough so ended up super nauseous and bleh.
    • Now it’s installed, I like the new lamppost as it doesn’t shine in my bedroom like the old one. I wish it hadn’t made me feel so ill getting installed though.
    • Finally did a food shop on Sunday. It was well overdue.

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • Huniepop
    • World of Warcraft
  • AC: Pocket Camp Level – 107
  • Godville Heroine Level – 55 (48% done)
  • Godville wood for ark – 28.4%
  • Godville savings – 1 million, 186 thousand
  • Cross stitch completed – 0
  • Most played game – Animal Crossing Pocket Camp (10 hours 48 minutes, average 1 hour 32 minutes a day)
  • Other –
    • New Wedding Gyroidite event. At least it’s an easy collection quest.
    • Basically given up Dragonvale for now. I’m not really enjoying it so not playing.
    • Bought Huniepop on the Steam sale after watching Genna and TB playing it on YouTube. It’s fun, though someone behaving like that in real life would be a really really bad thing. Fantasy is okay though.
    • Went into World of Warcraft on Sunday while on the Surface as there was a free weekend. Confirmed I’m really not well enough to play at the moment, but I miss it a lot. Did use my level 100 boost on my druid though, ready for when I return. Hopefully won’t be too long.

November? How did we get here?

The short version: I’m not doing very well. The long version:

  • Care home didn’t improve much. We put in an official complaint before I left and heard nothing. When we’ve got the energy, we’ll have to complain to social services and possibly the CQC. Coming home was horrible as I wasn’t well enough to travel, but I survived and was glad to be home.
  • On the 10th of September I managed to get out to watch the Great North Run! The care worker who took me discovered just how hilly where I live actually is. I saw Johan (for a few seconds – he is fast!) and lots of Running Ninjas and it was awesome! I probably shouldn’t have gone out but it was worth it.
  • Just as I was starting to get over the payback from going out for the Great North Run, I caught a cold. Unfortunately I’ve not recovered from it and in some ways I’m getting worse.
  • I’m no longer well enough to go on my desktop computer. Because of this, I’ve not renewed my WoW subscription. Since I’d had it active for at least 9 years, it feels weird not being able to even log into the mobile app. It’s hard to justify though when I was lucky to manage a couple of hours a month of game time. I’ll resubscribe when I’m well enough to play again.
  • I’m very grateful for the Surface right now. It’s easier for me to use than my desktop computer, especially as it has a touchscreen. I also don’t have to stay in a certain position to use it like I do my desktop. I can’t use it as my main tablet but I’m using it now to type this and it lets me video chat to Sammie on the rare occasions I’m able to use it while she’s online.
  • Sleep is still an issue. Mostly hypersomnia, but occasionally insomnia due to anxiety. Even when awake I’m spending most of my time feeling incredibly dopey and out of it. Today I’ve cheated and am drinking caffeinated drinks to be productive, but I have to be careful as it can cause really bad payback.
  • I’ve not been out of bed at all since the Great North Run. Even moving for pad changes and stuff is very painful and exhausting. I’ve also not been able to have a proper wash so I’m a bit smelly (though I’ve had wipe downs a few times and change my top every week or two). I’m hoping to have a bed bath soon, though a shower seems far away right now.
  • After lots of letters back and forth confirming stuff, we now know where the PIP tribunal will be (the local law courts as I’m only mostly bedbound, not completely and it’s pushing distance) but we’re still waiting on a date. I’m hoping they’ll let Johan speak on my behalf as my ability to think drastically decreases when I’m sat up (even when my chair is fully tilted and reclined).
  • We have new upstairs neighbours. One of them is a toddler who sounds adorable! Our main “issue” is dragging furniture being loud which compared to what we’ve previously had is barely anything. Baba cries sometimes but other than wanting to help them it’s not a problem (though my boobs do occasionally hurt like they used to- I’ve not breastfed for over 13 years so no idea what that’s about).
  • Not able to do any loom knitting as my hands won’t let me, but I’ve got lots of light up stuff and glow sticks that I’m enjoying. Some have been presents from awesome friends, including colour changing penguin lights from Vivacia Dreams which are amazing.
  • I’m sad I had to spend Halloween and Bonfire night in bed, but I did have Halloween snacks and wore my penguin mask which scared the evening care workers. I slept through Bonfire night so missed all the noise.
  • Worked out that I can put a fleece top on myself if I have it cut open through the back, like a backwards cardigan. It feels better than wearing a cardi or hoodie backwards as I was before. Got two so one can be in the wash. I did look for back opening tops but they’re both expensive and very institutional/old ladyish.
  • Also bought an electric hot water bottle. Too heavy and difficult for me to manage myself, but it stays warmer than the penguins and will be useful for when I go out again (especially as plug sockets are easier to find than microwaves). It’s so hot I had to buy a cover for it.
  • Finally saw the GP. Trying prochlorperazine again (as cyclizine is causing tachycardia), and have been prescribed peppermint capsules to hopefully help with digestive issues. They’re also going to ask Professor Newton about maybe having meds to help with the POTS, and we told them about the tribunal and me not being female and stuff. I’ve also asked to be checked for any nutritional deficiencies as my eating still isn’t amazing and we never checked they were gone after the last lot of supplements ran out. I hate blood tests but if this relapse is being caused or made worse by something treatable then it’s better to know and fix it.
  • Johan is still running. He completed an official marathon last Sunday, which he’s very happy about. He’s also pretty fast, coming 5th out of over 40 runners. He’s also still working on Vostok Inc. as volunteer QA and enjoying it.
  • We’re working on getting more organised and starting today the cleaner is coming for 2 hours instead of 1 each week. I also have my storage unit built which is helping as I now have places to put things.
  • Penguins continue to be awesome.
  • WTB Greater Heal pls

How Is It April Already?

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.

Brain broked but stuff happened

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.

Penguins Are Still The Best

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 🙂