Things Feel Weird

I’m doing pretty good for me. Having Johan home all the time means no waiting for urgent care and shorter waits for less urgent care, which means I’m physically doing a bit better. Not being alone in the flat most of the day is great for my anxiety, even though I’m still spending most of my time alone. Unlike most people, I am used to being unable to go out or see friends and family, so a few more months isn’t going to make much of a difference (I last got out of bed on the 29th of December).

Being that little bit better means I can do my favourite things, like play video games and read a bit. I’ve managed to watch Steven Universe The Movie, and the first two episodes of Steven Universe Future. I’ve caught up with YouTube videos I have full notifications turned on for. I’ve had video chats with Sammie, voice chats with Johan and even was in a group chat with other This is True supporters (that last one did mean I slept for most of the next two days, but was fun). I even got my loom bands out and made a strap for when I use utensils and things so they don’t go flying when I spasm (looms hold things together when they get chucked, luckily).

We’ve also had many friends and organisations check we’re okay and offered to help if we needed it. So far it’s fine. Between deliveries and our local shop, we’ve been able to get everything we’ve needed except chicken, and that we can work around. I’m very grateful we’re not forgotten and hope those who do need the help get it.

It feels really weird to be doing well during a global crisis. The reason Johan is home is because people are becoming ill and dying from a virus with no known treatment. People are losing jobs and worse. I saw on Twitter someone being told that instead of getting personal protective equipment for her PAs (impossible to source as a single person right now) she should go in a care home, despite having been exposed to someone with COVID-19 symptoms. Care homes are terrible places for disabled people even in the best of times. This is wrong, just for the need of some face masks.

There are still some struggles. As we’re doing a modified version of shielding for me (because full shielding is impossible if you need personal care and I’m technically not in the extremely vulnerable group, just in the likely to die if there’s not enough medical care available group) the lack of skin contact hand holds (we hold hands while Johan is wearing gloves instead) and hugs is hard. As is knowing I’ll not be seeing Sammie or friends in person for a while, after having plans to do so. Johan is starting to feel cooped up, so we’re trying to figure out the safest way for them to go out (the main risk being our neighbour). It’s also a bit frustrating being well enough to go out for the first time in months but not being able to for reasons outside of my control.

I’m in the middle of setting up some routines based on our current circumstances, as my previous ones were based around my care calls, which we’ve now cancelled (along with the cleaner). I’ve got a list of options for things to do so I spend less time trying to figure them out. I’m working on the best way to prompt Johan to do tasks now their routine has also been messed up, and to replace the prompts from the carers and the cleaner (the better care workers would let us know if things needed doing which helped).

One problem we’ve yet to solve is Johan getting overwhelmed if I ask for two things at once, even if I give an order to do them in. I need to do so as if I don’t, I forget the second thing while the first is being done, and Johan gets frustrated when I realise again 10 minutes or so after they’ve sat back down. I also forget it if I try to type it. I know Johan finds my memory problems one of the hardest parts of my illness to cope with, and this situation makes it really obvious.

I’m frustrated that I can’t be the carer that Johan needs. Johan is frustrated that they struggle with providing some of my care. We’re still doing mostly fine, and not having to travel to work (or volunteering) means Johan has been able to cook more which I appreciate. I just don’t know how I’m meant to feel, and that feels weird.

Self Isolation Update

So it didn’t take long after my last post for things to change. Johan’s races were cancelled, and we decided that putting me in a care home was not a good idea considering it would increase the risks to me and the other residents. Johan is also now working from home, as is everyone else in the office.

Johan still took the days booked off as holiday last week, which was Wednesday and Friday. On Wednesday we spent time together in my room, and they opened my curtain and window for me so I could get some fresh air (I originally wanted to go onto the ramp but we decided that wasn’t the best plan). Unfortunately I forgot to ask to have the curtain put up again, and the extra light in my bedroom caused me to feel horrendous over the weekend. It’s back up and I’m doing a bit better now.

Friday was originally meant to be Johan goes to Kielder day. Instead, it was Johan plays Doom Eternal day. I did get to see them occasionally, but mostly I heard lots of clicky noises from the living room πŸ˜› At some point we want to play the board game Pandemic, as I’ve had it for ages but not opened it yet.

Johan working from home is weird. Having them in the living room all day but not being able to just bug them about little things is weird, especially as they’re usually in a voice or video chat with colleagues so I can’t just yell through. We’re using the same system as when they were in the office, which is using WhatsApp for non important stuff (like funny pictures or tweets I find) and Google Hangouts for urgent stuff (I need some care doing). If it’s super duper important, I’ll yell anyway as the rest of the team knows that Johan is my carer, but hopefully it won’t come to that. (If I can’t yell, then I can use the Google Nest Minis to broadcast a message into the living room, which is also part of my wake up Johan plan on a night time.)

At the moment we still have the care workers still coming in. On top of the normal hand washing and gloves, they’re also wearing aprons now. We’ve told the agency that if/when they start having staffing problems, just let us know and they can cut our calls as Johan is here. It will make things harder for us but a lot of the clients have no-one so they’ll need to prioritise. We’re also considering if it might be safest to cancel the calls anyway, to reduce the chance of me catching the virus from them. We’ll need to check with the council for how that will work with direct payments but we’re not there yet.

Sammie is happy that there’s no school and her exams are cancelled. She was really stressed out about her GCSEs and I was getting worried about her. If her teacher’s assessment is close to her predicted grades she’s got no problems when it comes to doing the college course she’s interested in. We don’t know if her school will be providing any work as they’ve already done the curriculum and were just revising and getting prepared for the exams, but if not then she’s got projects she wants to work on. We’re also playing Minecraft together when we get the chance, and I believe she’s got an island to develop for her animal friends.

The hardest part of being in self isolation is that I won’t get to see Sammie in person for the foreseeable future. We’ll be video chatting as normal, but it’s not the same. This is especially hard as the last time she came over I was pretty ill and we couldn’t have any hugs. I’m also no longer having hugs or hand holds with Johan, and we’re reducing physical contact to the minimum. We go on voice chat when I’m on my puter and they’re not working so we can chat without being in the same room.

Johan is still going out for prescriptions and food, but otherwise is staying in. We did manage to get some baby wipes from Aldi, and I found an unopened bottle of alcohol based hand sanitiser that has technically expired but should still be okay according to what I’ve read online, so I’m now using that.

One of the reasons we’re being so strict about physical contact with me is that the NICE guidelines for critical care with COVID-19 came out. They will be using the Clinical Frailty Scale (pdf) to help inform when critical care is appropriate, as for those with a score of five or higher “there is uncertainty regarding the likely benefit of critical care organ support”. My score is seven or severely frail . Now this doesn’t mean that if I need critical care I definitely won’t get it, but as doctors already massively underestimate my quality of life (I’ve had many that don’t believe me when I say I’m not depressed among other things) and there is likely to be a shortage of ventilators, there’s a good chance that if I get that ill, I’ll be placed on palliative care instead.

As well as trying to avoid me getting ill at all, I’ll also be updating my emergency information sheet to state I want all life saving measures to be taken if required, and make sure that those who might be asked know my wishes. I still think the main risk is less the virus itself and it making my ME worse, as I’ve ended up in hospital before when unable to swallow and it would be even harder now. Unfortunately a couple of online friends have already come down with suspected COVID-19, one of whom is still in hospital. I really hope they’ll be okay. It’s so important for people to stay at home unless necessary, but some people haven’t got that yet.

So on to better stuff. Other than the payback from sensory overload caused by not having my curtain up for a couple of days, I’ve been doing pretty well for me. Lots of computer time, catching up with emails, chatting to Sammie and Johan. I’ve also been looking at the positives that are coming out of this. Everything from the mutual aid groups, people putting rainbows in their windows for kids to spot when they’re out on walks, individuals helping out those in need, and even companies giving free drinks to those who have to work.

For this week, I’m hoping to play more World of Warcraft and Minecraft, maybe read a book, and possibly watch the Steven Universe film. I’m also planning on lots of sleep and rest to keep myself as well as possible, doing my physiotherapy, and chatting to Sammie and Johan. I’ll be on Twitter so I can see penguin and cat pictures and videos. I’m going to set up a routine based around Johan working, especially since I seem to be awake during the day most of the time at the moment. Things may be uncertain right now, but there is still good out there.

Coronavirus and Stuff

I spent most of February sleeping and feeling rubbish because of a cold (not sure if it was the same one from January or a different one). When I was awake, I mostly played Merge Dragons as it required pretty much no thinking power (and I used walk-throughs for the levels I was struggling with). I did have Sammie come over during February half term, but was too ill for hugs. Next time she’s over we’ll have to make up for it, but seeing her made me very happy πŸ™‚

March is being better. I got my hair washed yesterday for the first time since November which is awesome. I’m able to go on my computer again and that means playing other games. First of all, I was one day away from getting enough Mechagon rep to get flying in World of Warcraft Battle for Azeroth areas. It took me about an hour but I did it! I can now fly everywhere that has flying enabled so I’m very happy.

The second was that Ellen, Bilbo‘s mum, created a Minecraft server for fans of Bilbo called Bilbcraft. Sammie and Johan had been playing a lot of it, including when I had Sammie over here during February half term, and I really wanted to play as well. Since being well enough to go on my computer, that’s been the main game I’ve been playing. I have a penguin main base, and a little island getaway which is great for exploring an area most people haven’t been to. I’m building up the courage to go to the nether and the end soon, as I want to build ender chests to make moving my stuff around easier. I’m not always well enough to interact with the other players, but they’re really friendly πŸ™‚

The biggest news we have is that Johan now has a paid job! They started just over a week ago, and as it’s the game company they previously volunteered for we know the boss is very understanding of our situation (and me needing Johan to come home with pretty much no notice at times). The hours are relatively flexible as well so we can work around my appointments and such. It does mean claiming Universal Credit instead of ESA. So far we’ve had the ID check and made Johan my appointee again (luckily no arguments there) so Johan can do everything needed for me. I might need to go through another work capability assessment, but hopefully it’ll be fine.

We also got a refund on our Bedroom Tax a few weeks ago. Johan sent an email to the council telling them we didn’t think we should be paying it because I need a separate bedroom for medical reasons, and after a few months we got a letter back saying they agreed and refunded us back to when the law was clarified in 2017. The timing was great as we got it just before Johan got their job so we’re using that to pay the bills until payday and Universal Credit is sorted out. Johan was also able to go down to London to see friends which was awesome.

So Coronavirus is the big news story at the moment. It’s not widespread in the UK at the moment, but it’s probable that will change at some point soon. People have been stockpiling items like hand sanitiser, toilet roll and baby wipes. I’m unable to wash my hands due to having no access to a sink, so rely on hand sanitiser to keep them clean. I do have half a bottle left, but it’s not alcohol based and from what I could Google is only partially effective against viruses. Johan has been trying to get me an alcohol based bottle, but they’ve been sold out everywhere. I also need baby wipes and am really hoping we can get some before running out.

I’m not particularly worried about getting it myself. Being mostly bed bound means I have limited contact with other people, and the carers wear gloves for all personal care tasks. This would be fine, except next week Johan is going to Kielder and that means I’m going into a care home. I don’t usually have much contact with the other residents as I tend to stay in bed there as well, but it’s a lot easier for a virus to spread there than at home.

If I were to get it, I’m not at high risk of having a severe case of coronavirus itself, as my lungs are pretty much the only part of me that seem to work correctly. The problem is even a mild cold causes my ME to become much worse, and if it were to be particularly severe then I could end up at the point of not being able to chew again which is not great. I do have an N95 mask if needs be, and gloves, but avoidance is currently the best plan.

Johan is asthmatic, so I’m more worried about them getting it. Swine flu made them very ill, and I made my ME much worse trying to care for them at that point (I could still crawl back then). We do have the care agency, but we’re not sure how quarantine would work for them. If it were me to get it then Johan would probably be able to take time off work if working from home isn’t an option (I dunno how realistic it is), but if Johan got really ill I might need to go into a care home again, while being isolated, and I have no idea how that would work. I’m also slightly concerned about the care home being put in quarantine while I’m in there, but since it’s next Wednesday and only for a week hopefully it will be fine. Needing pretty much 24 hour care complicates things a lot.

The people I’m most worried about are my friends who are immunocompromised or whose ME is much more severe than mine. Already some have been told by their doctors to avoid going out outside or socialising, and I know myself how horrible being isolated is, and it’s somehow even worse if you’re well enough to do things but can’t because of external factors. I really hope they stay safe and that the people around them help them avoid getting it.

In the meantime, I hope that Johan recovers from the knee injury that they got at the weekend so they can actually run at Dark Skies Kielder in just over a week, we can get hold of some baby wipes and hopefully some more hand sanitiser, as well as more food as the shop we did had half the order missing. I’m also wanting a bath while at the care home, as baths are awesome and I don’t have a proper one here. And while I’m well enough I’m going on my puter to farm sheep and fight old Gods as often as I can πŸ™‚

Goals for 2020

January was a write-off due to getting two colds. Right now I’m full of caffeine and taking advantage of my slightly less drowsiness to write this post.

Most years I make goals for the year to come. Last year I didn’t get around to making them, as I wasn’t doing too well at the beginning of the year. I did make some in 2018, but I can’t remember how well I did with them (other than only showering once). Anyway, the goals.

  • Have at least 2 baths or showers – Last year I managed one bath and no showers. I do need to get in touch with an OT to try and fix the shower chair not working for me problem, but hopefully when I go into respite I’ll have at least one bath and I also have an inflatable one that I just need to figure out the logistics of using (and help the other half be less scared of it :P).
  • Use a toilet or commode – This is staying on the list until I actually manage it πŸ˜›
  • Go out somewhere nice with Sammie – Last year we went to watch the Great North Run and to the cinema, and it’s great having a teenager who wants to spend time with her parents, so hopefully we’ll do something nice. One of her birthday presents is outings this year, though we’re still working out the details.
  • Keep up with Daylio (my diary) – This is really useful for keeping track of what I’ve done when, and is why I know I had one bath and no showers last year (and that the bath was in April). At the beginning of January I also added tracking my cognitive/pain/sensory and physical symptoms seperately, as sometimes I can be doing great with light and noise but be unable to move. Right now, I’m doing okay for cognitive (which is how I’m writing this), good for sensory, but pain is high and moving makes me feel horrendous. It’ll be interesting to see how much my mood is related to my symptoms, but to know that I need to keep it up to date.
  • Make progress on my Stuff that Helps series – Still thinking of a better name for it, but I’m hoping to take less than 18 months for the next post. I have the list of items ready, just need to describe how they’re useful.
  • Sort out my Twitter – I follow too many people, and can’t keep up with my timeline even though I spend quite a bit of time on there. This year I want to go through and unfollow some and put those remaining in lists so I have some chance of keeping up. To do this I need to get over the guilt I feel when I unfollow people who are awesome but aren’t ideal for me to follow.
  • Get my room more organised – this one is going to take some help, as I can’t do much, but I’d like my room to be sorted. A good start would be getting my clothes in my chest of drawers. I’d also like the wrappers removed from my rainbow roses.
  • Read 20 books – I managed this last year, and I’m hoping to do so again this year. My main problem is choosing what to read.

That is enough to be getting on with. I’m also hoping to get on my computer and play more World of Warcraft, but that is very health dependent. I also want to make a list of films and TV shows I want to watch now that I’m able to do so. Hopefully I’ll stop getting colds so I can get back to where I was in December and doing stuff πŸ™‚

2019 In Review

2019 was an interesting year. Apart from November, I didn’t blog much, but I did do some cool things. At the end of the year I improved quite a bit, which was awesome πŸ™‚

1. What did you do in 2019 that you’d never done before?
Took Sammie to the cinema πŸ™‚ That was awesome.

2. Did you keep your New Year’s Goals, and will you make more for next year?Β 
I didn’t end up blogging my goals, so I can’t remember what they were. I’ll try and get them done this year.

3. Did anyone close to you give birth?
A couple of online friends had super adorable babies in 2019.

4. Did anyone close to you die?
No one super close, but a few people I used to know well. Some weren’t surprising (though still sad), a couple were more unexpected.

5. Where did you visit?
Went into Newcastle in February on a date with Johan that involved trains and bridges. I finally saw the garden we have in April, and went on the path outside. Went into Gateshead and Newcastle in April, which included visiting the game developer Johan spends lots of time at. Went around the corner to vote in May and December. Newcastle again for my birthday in June. Gateshead central library with Sammie in August. Watched the Great North Run with Sammie and Martin in September. Went to the closest barbers in November. Big adventure to Tyneside Cinema and Fenwick’s Christmas window with Sammie in December, and a carol service at my parish church and then watching the Running Ninjas in my local park later in the month. Also went to the care home in March so lots of outings this year πŸ™‚

6. What would you like to have in 2020 that you lacked in 2019?Β 
A functioning body. (Sammie’s suggestion, which is accurate :P)

7. What will you most remember from 2019 and why?Β 
Going to watch the Great North Run with Sammie and Martin, and taking Sammie to the cinema. They were both awesome.

8. What was your biggest achievement of the year?Β 
Going to the cinema for the first time in over eight years. That Sammie came with me made it even more awesome.

9. What was your biggest failure?Β 
Not managing a shower at all. One day I might contact the OT and let them know the shower chair isn’t suitable. Not sure if that will be this year or not though. Hopefully my recent improvement will mean I can use it again soon.

10. Did you suffer any new illness or injury?
Just colds and even more migraines. I’ll take that as a good thing πŸ™‚

11. What was the best thing someone gave you?
Johan’s potatoes πŸ˜› Also cuddles from Johan and Sammie. Cuddles are awesome.

12. Who impressed you this year?
Sammie for getting through a very tough time successfully. Johan continued being awesome. Friends doing awesome stuff. People surviving.

13. What made you appalled and/or depressed?
Politics. Mostly politics and the stuff around politics.

14. Other than food, bills and disability stuff, where did most of your money go?
Johan, Sammie and eBooks. I still haven’t successfully reduced my spending on them πŸ˜›

15. What did you get really, really, really excited about?
Potatoes! Sammie! Johan! Bridges! Penguins! Trains! Going Outside! Elmers! Cute babies! Cats!

16. What big events will you remember most from 2019?Β 
Probably the cinema trip. Also the country deciding they hate vulnerable people.

17. Compared to this time last year, are you:
a) happier or sadder?
Happier. Still on a high from going to the cinema (and Johan’s potatoes :P)
b) healthier or more ill?
Doing better physically, in that I get less payback from outings so can go out more. Cognitively about the same.
c) richer or poorer?
My income is about the same, but bills have gone up so a little bit poorer. We manage though πŸ™‚

18. What do you wish you’d done more of?
Talking to people. It’s still one of the most draining things for me to do, so I don’t get to do it much.

19. What do you wish you’d done less of?
Panicking. I no cope well with being home alone. Johan goes out most days. It no go well.

20. How did you spend Christmas?
Watching telly, eating amazing food (Johan’s potatoes! Oh, and roast chicken and stuff), napping, chatting to Sammie and opening presents. It was a good day.

21. What did you love in 2019?
Other than Johan, Sammie, and family, penguins, jaguars and cats are definitely up there. Seeing people responding to bad events with love and kindness was amazing.

22. How many trips out?
Excluding the trip to and from the care home, I went to vote twice and had 10 fun trips to barbers and on the path and into Gateshead and Newcastle. This is an improvement πŸ˜€

23. What was your favourite TV programme?
Steven Universe. I’ve yet to watch the film but the feels at the end of the season before the film were so much. I also really enjoyed The Good Place (and got Sammie into it).

24. Do you dislike anyone or anything now that you didn’t dislike this time last year?
Sammie’s dislocated knee. Johan’s bad knee (he hurt it on the 29th December). No more injuries please.

25. What was the best book you read?
Rush of Blood by Heather Shahan (sequel to last year’s favourite Burn the Ashes) was the best fiction book I read. Yes, You Are Trans Enough by Mia Violet was the best non-fiction book I read (and highly recommended to anyone who wants to learn more about coming out as trans, whether you’re trans or not).

26. What was your greatest media discovery?
The Good Place on Netflix thanks to Rammi, and LockPicking Lawyer on YouTube (I can’t remember how I got watching them, but it’s really soothing and I’ve learnt a lot about what makes a lock good or bad).

I’ve yet to play it, but I’ve really enjoyed watching others play Untitled Goose Game, and the memes that came from it.

27. What did you want and get?
Johan’s potatoes (but not for my birthday, only Christmas). Going to the cinema (and other places) with Sammie. Penguins. It was a good year.

28. What did you want and not get?
A shower. To see friends. A miracle cure πŸ˜›

29. What was your favourite film of this year?
Guardians of the Galaxy 2. It was fun πŸ™‚

30. What did you do on your birthday?
Went into Gateshead and Newcastle! Had cocktails and birthday cake and went on trains and saw bridges!

31. What one thing would have made your year immeasurably more satisfying?
Less TERFs/transphobia. It sucks.

32. How would you describe your personal fashion concept in 2019?
T-shirts/pyjama tops with no bottoms in bed πŸ˜› Dress and mermaid tail out of bed. Usually purple, penguin and/or cat πŸ™‚

33. What kept you sane?
Johan, Sammie and Penguins. Being able to check if my hallucinations were real or not was useful as well.

34. Which celebrity/public figure did you fancy the most?
Still Jessica Kellgren-Fozard. Luckily Johan’s fine with it πŸ˜›

35. What political issue stirred you the most?
All of them. Having a large Tory majority government means it’s not great for vulnerable people, and that’s before you add Brexit.

36. Who do you miss?
My friends. Ron. Everyone I struggle to communicate with.

37. Who was the best new person you met?
The other people at the Spoonie Christmas Party were awesome πŸ™‚

38. What was the best thing you ate?
Johan’s potatoes. I still want them for my birthday πŸ˜›

39. Tell us a valuable life lesson you learned in 2019?
It is a lovely day in the village. And you are a horrible goose.

40. A quote that sums up your year: