Choices

It’s ME Awareness Week, and so here’s a post about what it’s currently like for me to live with ME. I have pretty severe ME, being almost completely house and bedbound, but have been lucky enough to improve over the last few years. This means I now have choices.

Each day, I attempt to figure out several things. How much energy do I have? How am I doing with light, noise, smells, movement and touch? How well are my hands working? How upright can I be? How much pain am I in? Do I have a migraine coming? I’m pretty good at this now, but sometimes I miscalculate or something unexpected happens and I end up with payback.

On bad days, decisions are simple. The lights are kept dim. I wear my earplugs and ear muffs. Movement and touch is kept to the minimum required for essential tasks like toileting, taking medication and eating. Izzy spends the bare minimum amount of time in my room to care for me. I try and sleep, as I know that’s the best way to cope and get back to better days.

On my good days, I now have options. If I’m doing good (for me) sensory wise, I can watch something on my television. Or I can go on my computer. I’ve got a massive backlog of films and TV shows I want to watch from years of being too ill, so if I’ve also got some concentration I can watch something from my list. If I don’t, then YouTube is great.

If I’m seeking connection to other people, I’ll often watch streams on Twitch. Though I know it’s a form of parasocial relationship, being able to chat to someone live and with others watching the same thing really helps me feel less isolated, especially as you get to know other people in the community. The lack of expectation to hold a sustained conversation makes it much easier and it’s not important if I miss things, plus I can ask if I’m really confused. I’m sad when I miss my favourite streamers because I’m too ill to watch.

If I’m having a good hands day, I have to choose how to use it. Do I eat food requiring cutlery (I normally eat finger foods or liquids through a straw) or do I brush my teeth? I can’t do both, or I overuse them and can do less for myself the next few days, adding extra work onto Izzy. If Izzy isn’t available (sleeping or working) I might choose to play games on the Xbox instead or do some loom knitting. They all hurt but so long as I stop before they start spasming I’m okay.

If I’m having a good dizziness day, then I’ll be able to raise the backrest on my bed and not lie flat, which is something I’ve been working on for a while. I’ve also recently regained the ability to hold my head up for short periods, and lean forwards to make changing my top much easier. I’m hoping it won’t be too long before I can sit upright for a few minutes without either vomiting or fainting.

If touch is more bearable, then it’s time to take advantage of that and have a wash. If it coincides with a good hand day, then I’ll be able to wash my own hands and face, otherwise I need help. To reduce overload we usually use bed in bath wipes, but if I’m really doing good then we can use soap and water to get rid of the skin buildup.

Sometimes I choose to do less for a few days to store up extra energy for special events. These I can’t do everyday, but if I’m careful and time them well I can manage with minimum payback. Being hoisted in my wheelchair to go into the living room or go outside. Having my hair washed or shaved off. Seeing Sammie or a friend. Having a video conversation or one via voice (with text backup). Playing more difficult video games. Having medical or other appointments. Having Izzy join me in bed and cuddling.

My normal days are somewhere between my good and bad days. I’m very lucky to be well enough to make these choices. To be clear, even on my best days I’m still experiencing a lot of unpleasant symptoms. Muscle, joint and nerve pain pretty much everywhere, exacerbated by any movement or touch. Twitching, jerking and spasming. Constant headache, sore throat and flu-like malaise. Severe fatigue and weakness. Sensory sensitivities that though not as bad as on worse days, still require management like sunglasses, earplugs and noise cancelling headphones to go outside. Nausea, digestive issues and double incontinence. Dizziness, motion sickness and tachycardia. That’s the short version.

What happens if I overdo it or an unexpected event happens, like loud noise, strobe lights or strong emotions? Payback. Worsening of my normal symptoms and often new ones as well. If I’m lucky, I’ll get the less bad version and just need extra pain medication, a reduction in activity and a lot of sleep for a few days, then I’ll be back to my normal. If I get a migraine, which has many triggers, then add my antiemetic to that (if I figure it out before I start vomiting) and cold packs.

If I’m unlucky and get the worse form of my payback, things are not fun. On top of my normal symptoms getting worse, I get extra ones like severe muscle spasms and paralysis. Chewing becomes hard or impossible. My digestive system slows to a crawl and I’ll bring up food for multiple days. Speech disappears. Rolling over for pad changes takes everything I can muster, even with help. Often I desperately need to sleep, but I’m in too much pain to do so. Izzy being in the room is too much, and a handhold is agony. There’s nothing we can do except dose me up, heat my penguins and reduce as much stimulation as possible until things improve. The good news is it’s now rare for me to get this form of payback for more than a few days, though I’ve previously had periods of weeks stuck here. If I try and push through payback, I end up relapsing, where I lose abilities I already have and my normal days become more restricted.

It’s taken years to build up to be able to do what I can now. It’s really hard to do less so you can do more in the future, especially as I want to do everything myself and help those I love. I still have the thing where if I’m doing better physically like I am now, things are harder cognitively which is partially why I’ve not blogged in so long (the other reason is a friend died while I was writing a blog post and the grief and guilt fried my brain).

My body still likes to throw some surprises, like getting migraines from not supporting my head and neck properly while propped up and vaginal spasms making my most recent smear test incredibly painful and has my doctors recommending I get my Mirena coil changed under anaesthetic, whereas previously I had both done with no problems. Most things though are going in the right direction.

Having spent so long where what’s a bad day now was a normal day, and knowing that others with severe ME are like that or worse, with less support, I feel so privileged, even though I still want to be able to do much more. The choices I make are hard, but at least I’m well enough to have them.

Autumn Update

Spending most of my time in a fuzzy state has meant no blogging and a lot less being on social media. I’ll often have Twitch or YouTube on but communication is hard. Some things have happened since May though and I’m putting what I can remember here for future Danni.

Danni and Martin outside. Danni is in their wheelchair, wearing a purple hat, purple sunglasses, a Pizza John mask (man's face in red and white with a moustache), a purple penguin top, pink bib and purple mermaid tail. They are holding Poseidon (a baby emperor penguin) and Purple Penguin.

Martin is standing behind, leaning on the wheelchair. He is a tall white man with short brown hair, a big smile, and is wearing a grey hoodie, white t-shirt with blue and green image, and blue jeans.

The biggest was my 35th birthday in June. As Izzy and I were both fully vaccinated, social distancing and masking was still in place, and I was feeling up to it, I was able to go outside for the first time this year, and further than the ramp since December 2019. Joining us was my brother Martin, who I’d not seen since August 2020. We had an awesome day 🙂

We went into Gateshead, as it is within pushing distance and Izzy is very out of practice. It was weird seeing all the new social distancing measures, nearly everyone wearing masks where it was busy, hand sanitising stations and other changes. I wore my Pizza John face mask as I’d not had an opportunity to wear it before this, and I like it 🙂

Just as I was recovering from that, it was announced that social distancing and masking were no longer going to be enforced, only encouraged. Along with Delta causing symptoms even in those who’d had both vaccine doses, we decided it was best I stayed in again until we saw how that affected things, then I had a series of migraines and the weather kept changing so I wasn’t well enough anyway.

Izzy has cautiously been going out. She’s restarted Parkrun and seen a few friends. She also ran the Great North Run, her first half marathon since she started on hormones and officially as a woman. As expected, she was a lot slower than previously, but she did better than she expected and was extremely happy with her result. She’s finding it hard to get the motivation to go running outside of Parkrun, but since she’s doing a full time job while caring for me day and night it’s not surprising.

She’s been on hormones a few months now and her body is visibly changing faster than we were expecting. Apart from a couple of dresses and skirts Sammie and I bought her she’s mostly wearing her old clothes or stealing mine, so we’re going to have to figure out what she likes to wear and look into actual bras. She seems a lot more comfortable with herself, though going through second puberty is interesting for both of us.

One bad thing that happened is Izzy’s PIP renewal was denied, because apparently having a job means you’re no longer disabled (PIP is non-means tested). We wish it worked that way, but it doesn’t. Because of everything else going on (full time job, looking after me, starting hormones, having no help, The Event) she doesn’t have the mental capacity to ask for a reconsideration or appeal, but once things calm down again we’ll put in a new claim. She’s still entitled, just the normal lies and inaccuracies that assessors give.

We’ll also be affected by the removal of the £20 a week Universal Credit Covid help at the end of October. We’ll be okay, but it does mean having to reduce some bills and trying to rely on takeaways a bit less (which we have so frequently because Izzy isn’t able to make food everyday). We got a new big fridge freezer which helps, and Izzy managed to reduce our Virgin Media bill while also increasing our broadband speed which is good. Ocado have also started delivering in our area so before we lose it we did a shop for fancy food that has helped with the less takeaways thing. They sell Kex and Plopp, two of my favourite Swedish chocolates 🙂

I tried to get someone to come in and declutter/do a big clean, but two companies just stopped communicating with me and I’ve not had the energy to look for more. As Izzy is able we’re getting stuff taken by the council, and I’ve offered to use the money I put aside for the decluttering company towards her trans stuff if she’s able to do more of it herself, which is a big incentive and seems to be helping a bit with her executive functioning. She did manage to get enough done to get the new fridge freezer in, and a new dryer as it turned out ours had packed in. The new dryer is helping as it’s meaning we’re getting caught up on laundry which wasn’t helping matters. Luckily we bought them before our income reduced.

I managed to play World of Warcraft on and off until August, then I became too ill. I didn’t get on my computer at all during September, and was struggling to use my tablet at times. Today is the first time my brain has been vaguely working since then. What brain ability I have had has mostly gone into helping Izzy with stuff she struggles with, like reminders, food shops, timers for cooking food, making sure she gets up at certain times if I’m awake. When I’ve been physically okayish I’ve been able to have a wash, brush my teeth, and a couple of times even fold some clothes, but those days have been less frequent than I’d like.

The one thing I have learnt that’s new is how to solve a Rubik’s cube. It took me over 30 hours, and I’m not able to do it correctly every time, but I got there in the end. I bought one as a fidget toy, got really into watching speed solving on YouTube, then found a pdf guide that I was able to understand (the videos were too confusing for me). After a week my super cheap cube was annoying me too much with the spring noise (a spring scraping the plastic when it’s turned a certain way) so I bought a slightly nicer one (the YuXin Little Magic 3×3 M from Kewbz UK) and paid to get it set up so I knew it wouldn’t have any issues. It’s so nice to turn and much easier for me to use. I gave Izzy my other one but she keeps using mine instead 😛

I also managed to finish my loom knitted arm warmers. I want to make another pair as they’re so cosy and also have a hole for my watch so I don’t have to take it off, though maybe in a slightly lighter weight yarn as sometimes they’re too warm. I need to find my yarn stash as it’s somewhere but I’m not sure where. As my hands are slightly better I want to try hand sewing some small items, so bought a hand sewing stitch book. It’s awesome but very heavy.

I was really struggling to use Daylio, and I stopped when I figured out why. Though it was fine for tracking activity, trying to figure out my mood was too much when my brain went to fuzz and to get to the activity tracking you have to go through the mood bit. So I’m now hunting for an app that will help me track things without needing to worry about moods. I’ve got Habitica for habit tracking and that works well, but it’s hard to see when I last did something when I’m on my tablet and I’m not using my computer often enough to check there.

The neighbours are a bit less problematic now, probably as the council warned them. Still have the occasional bad night where there’s someone outside ringing our doorbell and throwing stones, but most nights ear plugs are enough to block out the noise. I get very anxious when Izzy is out, but there’s not much we can do about that and I’m not stopping Izzy doing the things she needs or wants to do, especially as she’s doing so much for me.

I’m hoping that I manage another blog post before Christmas this year. I’ve got so many plans and being fuzzy and out of it sucks. Hopefully it’ll be better now 🙂

Second Covid-19 Vaccine Get

This is my second version of this post, as just over a week ago I wrote one saying I wasn’t feeling too bad after getting the second vaccine. I just needed fact check something with Izzy, so went to sleep thinking I’d post it after I woke up. And I felt awful. I’m still not great but I’m hoping it’ll ease off soon.

I got my second jab on Tuesday 4th May, and getting it was fine. Same person as the first time which helped, as we could skip the don’t get worried if I stop responding stuff. For the first few days I had a sore, useless arm and felt a bit fluey, but not as bad as the first jab.

The evening of Friday 7th May I woke up feeling horrendous. High temperature, chills, shakes, worse ME symptoms, severe nausea, and just generally feeling awful. Izzy had her jab that afternoon but luckily wasn’t feeling too bad, as she had to give me all the meds I’m allowed. I was only awake about 3 hours before my body forced me to sleep again.

I think it’s a mixture of vaccine side effects and ME payback from getting the vaccine, compounded by having new problematic upstairs neighbours, so my rest is being interrupted. I’m finally doing a bit better, but still am much weaker than my normal. It sucks having to stop eating because I can’t chew any longer rather than having finished or being full. I’m hoping to be back to my normal soon, as once I’m fully protected (which is meant to be the coming Tuesday) I’m wanting to go on adventures and/or see people.

Izzy had about a day of feeling lousy then was pretty much fine. She took the Friday she had the jab off, but was able to work again on the Monday. She’s also excited about the prospect of seeing people again.

I’m going to bullet point the rest of the updates as it’s easier for me and I want to finish this post.

  • The sore arm from the first jab lasted 10 weeks. I really hope it doesn’t this time.
  • Izzy has started sorting the living room and has set up a computer for Sammie to use. For me to get in there we need to remove some old furniture and stuff, which requires help. Hopefully soon.
  • We got a new tabletop dishwasher called Bob. Bob is purple and my contribution was large googly eyes. It’s already helped Izzy so much.
  • Izzy has gone private for her gender healthcare, as we don’t know how many years it’ll be before she’s seen on the NHS. Expensive but worth it. She’s already happier because there’s progress.
  • Just after Izzy emptied her bank account to pay for that, we discovered we need to replace our fridge freezer. Typical. Our current one will need defrosting and the hallway needs the boxes of pads and stuff moving before we can get a new one delivered.
  • We’re pretty sure Izzy has ADHD as well as being autistic, but neither of us have the spoons to sort out an assessment for her. It does help explain certain struggles she has that autism doesn’t quite cover (though there’s a lot of overlap).
  • Izzy is also exhausted because she’s looking after me 24/7 along with being a game developer 40 hours a week for over a year now. If circumstances allow, we’re hoping she’ll get a break this summer.
  • We’re not sure when we’ll get the careworkers back in yet, but it’ll be before Izzy goes back to the office.
  • We don’t know when Izzy will be back at the office. We do know it’ll be a different office, and the new one is further away. We’ll have to take this into account when figuring out what times the care workers should come.
  • We also need to sort out getting a new cleaner/house help person. As they’ll eventually be coming in when Izzy isn’t here, it’ll need to be someone I’m comfortable being in the flat alone with, which I wasn’t with our previous cleaner. I’m hoping whoever it is can help me organise my room – I have a plan, but need someone to be my arms 😛
  • I have some niggly and routine health stuff to sort out once things calm down. Nothing super urgent but they need doing. For obvious reasons I didn’t want to go to the hospital until I’m protected from Covid-19, and nor did I want to tie up a doctor or nurse for things that can wait a bit.
  • When not experiencing jab side effects, I was getting on my computer and playing World of Warcraft once or twice a week. Not as often as I’d like, but enough to make some decent progress.
  • I’ve gotten obsessed with the mobile game Idle Brick Breaker. It’s just colourful balls breaking bricks to make big numbers, but perfect when my brain isn’t working. I wish it were a proper idle game that progressed while not open, but watching it is great.
  • Our new upstairs neighbours are drug dealers. We know this because they’re not quiet about it, and we can hear their shouted conversations. It’s also meant people visiting at all hours of the day and night, often banging on the communal doors, and sometimes ringing our doorbell or banging on our windows. There’s also a lot of yelling and arguments.
  • My biggest flashback triggers are loud arguments and things hitting the window. I’m struggling quite a bit with them, panic attacks and dissociation. It’s also making my ME worse.
  • The last time we had an upstairs neighbour involved with drugs he ended up getting murdered. Although that’s probably not going to happen this time, last weekend the flat upstairs was raided by the police as a man was found dead not that far away.
  • Izzy and our other neighbours are reporting this to the housing when they can. Last time we were seriously considering moving. Upstairs know I’m ill in bed as our nosy neighbour told them, but that doesn’t stop them making so much noise they wake me up with ear plugs in at 1am some nights.
  • Other than upstairs, it’s a pretty quiet area. Before they moved in the worst noise was the kids playing next door or the nosy neighbour vacuuming with her flat door open. Ear plugs deal with them fine.
  • Penguins are still good. Baby penguins are being born and they’re adorable.
  • We found a really friendly, accepting community on Twitch and Discord after a random raid. They like us both as individuals and as a couple. I overdid it for a few weeks watching streams and chatting because it’s just so lovely. They’ve really helped Izzy’s confidence as well.
  • I commissioned the below emote to use on Discord. I love it 😊
A cartoon purple penguin smiling and hugging a red heart.

Vaccine Time

On Friday 19th February, I got my first Covid-19 vaccine, as did Izzy. Mine was in the morning, and I got the Oxford AstraZeneca one because it travels best and I was at home in bed. Izzy got the Pfizer one in the afternoon as she was able to get to the local vaccine centre.

As expected, there were some side effects. Izzy had a sore arm, a bit of a headache, some extra tiredness and fatigue that lasted a day or so, then she was fine. Tuesday she was able to go for her first run in a while without issue (until she decided to add Ring Fit to it Wednesday morning – she’s no longer fine :P). I ended up sleeping through most of the rest of Friday and Saturday, and initially had a very sore arm that I couldn’t use, an impressive bright red lump, worse headache and flu-like symptoms than my norm, and generally being worse than my normal. Ibuprofen and extra sleep helped and I’m mostly back to my normal now. Feeling rotten for a few days sucks, but it’s better than getting Covid.

So far there’s no sign of any microchips, 5G or superpowers, which is disappointing but expected as those are conspiracy theories, not actual possibilities. There are no new autistic traits either, as vaccines don’t cause autism.

Though I still have severe ME and am still almost completely bedbound, before the vaccine I’d been improving since The Event started. Since going out wasn’t going to happen, I instead was able to watch TV shows and films more frequently and with less payback. I’m also able to occasionally brush my own teeth, wash my own face and the big one, sit up for long enough to change my top, though I do get payback from those. I’ve also been able to be more upright in bed for longer without payback. If touch and movement weren’t such big triggers for payback then I’d be able to do much more, but though I’m working on them they still are.

Once our vaccines kick in, we can look into having other people in the flat again (still taking precautions, because it’s not 100% effective). The main person I’m looking forward to seeing is Sammie. We want to set up a computer for her to use while here, but need to find a space for it. Hopefully we’ll get that sorted once we can have someone in to help get rid of some old stuff.

Goals for 2021

Most years I try and set some goals for the year, and review last year’s goals to see how they went. These were last year’s goals:

  • Have at least 2 baths or showers – Nope. Didn’t happen. Had none. The Event meant I didn’t go into a care home and Izzy was far too overwhelmed to try and give me a shower.
  • Use a toilet or commode – Also a nope. Requires too much organisation for during The Event.
  • Go out somewhere nice with Sammie – We had plans! I was gonna take her places! She was gonna go to a Theme Park with Izzy! Then The Event happened. She came over three times in total.
  • Keep up with Daylio (my diary) – Partial yes. Had a period in June and July where it just got too overwhelming for a bit, but I managed it most of the year other than that.
  • Make progress on my Stuff that Helps series – Another nope. I’m blaming The Event for it being too much.
  • Sort out my Twitter – I started this, but failed miserably. I need to be ruthless and unfollow pretty much everyone I don’t interact with, but it’s scary.
  • Get my room more organised – Nope. See The Event that prevented me getting someone in to help.
  • Read 20 books – I did this one 🙂 Only one I fully completed.

So yeah, I wasn’t prepared for a pandemic causing massive upheaval, not having carers most of the year, and having to hide from the world even more than my normal. I think I’ll be more gentle with my goals this year.

  • Don’t get Covid-19 – Obviously it’s very contagious, so it wouldn’t be anyone’s fault if I did get it, but as it’s likely to make me very ill we’re going to continue to basically shield and hopefully we’ll get vaccinated and then maybe I can think about going out further than that ramp again.
  • Do more loom knitting – This is dependent on my hands cooperating and stuff, but I enjoy it and even if I only make things with the most basic e-wrap stitch, it will be good. Even finishing the arm warmers I’m working on currently will be a win.
  • Plan getting my room more organised – Hopefully we’ll be able to actually do some of it, but if nothing else, planning to sort it out so I can just hand the plan over to someone when it’s safe for them to come in here will be helpful.
  • Keep up with Daylio – Even if it’s just doing the mood portion. It does help.
  • Read 20 books – Since I managed this last year, I’m hoping for the same this year 🙂

That’s enough to be getting on with. I do hope to use a toilet, get a bath or shower, go out with Sammie, and generally do more stuff, but after last year I think I’ll stick to ones that can be done even during a pandemic.