Category: Physical Disability

Danni

Dysautonomia Sucks

Autism, Danni, M.E., Mental Health, Penguins!, Physical Disability, Rant, Real Life

A rant, then an update.

It’s becoming more obvious to me that dysautonomia (dysfunction of the autonomic nervous system) is causing the worst of my symptoms right now. Which is a problem, as that’s things like heart rate, blood pressure, breathing, digestion, urinating, and everything else the body does without thinking about them. POTS (postural orthostatic tachycardia syndrome) is one form of dysautonomia, but ME can cause others.

The main ones causing me bother are heart rate and blood pressure (making me super dizzy and unable to sit up, amongst other things) and digestion. The first I’m used to, as it’s one of the reasons I’ve been bedbound so long. The second one has recently got worse, and I’m not happy about it. I’m also having issues with breathlessness and bladder stuff, but they’re manageable.

So digestion. About a month ago my body decided that solid food was just gonna hang out in my stomach for more than a day. Which I know because sometimes it comes up and reminds me it’s not moved on to my intestines yet. I’ve had reflux and regurgitation issues as long as I can remember (one of my earliest memories is bringing up milk and apple while in nursery, so I was 3 or 4), so I’m used to it. I’m not used to bringing up identifiable bits of chicken 37 hours after eating it, or rice 26 hours after doing so. 10-12 hours is my normal since getting ME.

I’ve had it before, and previously I’d give my stomach a bit of a break by swapping to liquid foods for a few days, and that would be enough to sort it. It’s also previously only happened when my ME has been really bad, so I’d normally be struggling to chew as well so liquids helped there too. I figured I just didn’t have the energy to digest properly, and once I came out of that bad period it resolved itself.

This time, my ME isn’t actually that bad. Chewing isn’t difficult. I’m able to do basic self care tasks like wipe my face and help with things like changing my top. I can even use cutlery every few days. I have enough energy to watch films and read books. In those ways, I’m doing pretty good for me. But I can’t digest solid food properly.

I swapped to liquid and dissolvable foods, following what my dietician told me years ago when chewing was impossible, and it did help. I was only bringing them up for 12-14 hours after eating, which isn’t amazing but I’ll take it. I’ve also discovered the combination of soup and milkshake is not one I like, especially mixed with stomach acid, so I really need to leave at least 14 hours between them. Rusks go with both, and have the advantage of being solid enough to feel like I’ve eaten something, but pretty much liquid by the time I’m swallowing it. I’ve eaten a lot of rusks.

Every few days, I’d try a bit of rice or banana to see if it was getting better. And until last week, it wasn’t, so I went back to the liquid foods. Then I again tried rice, and I stopped bringing it up after about 12 hours. Since then I’ve had a few days where I’ve been okay with what I’ve eaten, and others where I’ve needed my antiemetic to keep it down and it’s still coming up the next day. I think it’s getting better but slower than I’d like, and I’m mostly only having one meal a day with snacks which isn’t ideal but better than nothing.

As for what’s wrong, we suspect I might have something like gastroparesis (partial paralysis of the stomach), which is not uncommon among those with my combination of stuff (especially hypermobility and dysautonomia). I’m too ill to get tested though, and it’s not yet serious enough to make us worried, as I am still able to eat, even if it’s not necessarily what I want. I’m sure it’ll resolve itself like it has done previously. My IBS continues to be a pain, but it’s my normal so that’s also reassuring.

I do want to know why I still get hungry while my stomach is full though. That one I can’t figure out. Good for making sure I still eat, bad for my nausea and reflux.

</end of rant>

Other than that, I’m mostly doing okay. I’ve already read 7 books, so I suspect I’ll be upping that goal soon. I’ve watched a couple of films, and have started raising the back of the bed in the hopes of getting back to sitting up, though I overdid it one day and got payback. I’ve also been doing some planning.

Izzy’s leaving the country this month. Twice. A few months ago she booked a cruise to northern Europe with some friends for her annual holiday/break from looking after me. That starts on the 30th March, so I was already updating my care home instruction book and sorting things out for that. Then last month she got asked to go to the USA for a work trip. This is a massive opportunity for her, so we said yes. This event starts on the 19th March.

We get 4 weeks of respite a year, though it turns out it’s not January to January like Izzy thought, but July to July, which meant we only had 15 days left. Social services have been very good and given us the extra we need as a one off, which we’re very grateful for. It’ll be the only time I go this year, so that’s fine.

Izzy will be home the week between the two trips, but I’m not going to be well enough to travel twice in such a short space of time so I’ll just stay at the care home until she’s home from the cruise. Which one? We don’t know yet.

All the ones with nursing care I’ve previously stayed in near here, and the others within easy travel distance, can’t take me. Mostly because they have no room or aren’t doing respite right now, one because they think they can’t meet my needs which is better to know beforehand but frustrating. Izzy’s now trying ones that are further away and we’re accepting I’m going to be more ill. I’m meant to be going in on Friday so there’s really not much time (Izzy has been trying to sort this out for the last couple of weeks, so it’s not her fault).

Am I well enough to travel? Nope. We know ways to mitigate the worst symptoms, and luckily unlike when I go to hospital I don’t need to be able to communicate clearly at the other end (we do warn them) so I can mostly shut off and just try and recover. Going into respite last year it took about 3 months to recover once I got home, but hopefully because my ME symptoms aren’t quite as bad (even if my dysautonomia is worse) it won’t take that long this time. Care homes are not a good place for me but Izzy being unable to continue looking after me would be worse. The extra week and a bit for the work trip won’t make that much of a difference.

Izzy has requested I don’t say exactly what her work trip is, but there’s no way we’d have been able to afford it. Luckily we’re not paying 😛 To help, her boss has agreed that as me going into respite is essential for Izzy to go, the day I go in counts as a work day. If she’d not been going on the work trip, I’d have gone in on a day she’s already requested off as holiday before her cruise, so this is cool and fair. Hopefully she gets a lot out of the work trip, and that more people will know about Arcade Paradise VR (the reason she’s going). I’ve demanded she brings home some peppermint Lifesavers, since I remember really liking them as a kid but they’re too expensive to buy here. I also want pictures of San Francisco and planes.

The cruise is going to be fun. Same friends and cruise ship as she went on last year, but another friend in the same group has been convinced to go. Last time it was to the Norwegian Fjords, this time is northern Europe (Germany, the Netherlands, Belgium). I’ve been involved in the planning, have been promised lots of photos, and a trip to the zoo to see penguins (and meet another online friend who lives nearby) has been organised. I’m mostly hoping I’m well enough to video call while they’re at the zoo so I can see the penguins, but if not Izzy is going to film them for me. I’ve also told her to try a fresh stroopwaffel.

To add to my anxiety over not knowing what care home I’m going to stay in, my home care is all messed up right now. Previously I had a stable team of 3 amazing care workers, but two of them have left in the last month, and the third only does Tuesdays (and has taken this week off). I have been asking who is meant to be doing my calls, but it’s been changing on the day and we’re not getting told this. They’ve also been changing the times of the calls without letting us know, so I keep panicking. I’m hoping it’ll be more stable when I come home again, but we’ll see.

The combination of everything means I’ve been struggling to sleep until I basically crash. I’m also both drinking and weeing more (caused by adrenaline), meaning Izzy’s being woken up more often to deal with that. Once I know what’s going on it’ll be fine, I just need to get through this period. Being Autistic is mostly great when things are going well, but I really struggle with uncertainty and change, which is what’s currently happening.

It has been fun planning for Izzy’s trips though. When I couldn’t sleep one night she gave me the job of finding her a new suitcase as she gets one checked bag for the work trip and her current one is noisy and awkward to pull. I gave her multiple options and she decided to go for the biggest that met the size requirements, not realising it’s huge. It’s purple and lightweight though, so will be good. Just need to figure out where we’ll be storing it when she gets home again. We also found out American Airlines and Alaska Airlines allow huge cubes that would be easy to transport a human in, if it weren’t for the 27 kg weight limit.

What I do in the care home depends on how well I am. I’m hoping I have decent enough wifi or 4G so I can watch stuff, and I’m taking my Steam Deck and adapted controllers so I can play games if I’m up to it. Over the next couple of days I’m choosing clothes and downloading games and stuff to watch in case the connection isn’t great. I’ve already updated my care plan/instruction book (there’s only one extra section to clarify something). If there’s a TV I’ll take my Chromecast, if there isn’t I might take one depending on how difficult it is. There’s also F1 to watch if I get a good enough signal to stream it.

If I’m not well enough for any of that, Reddit exists for when I’m conscious, and adrenaline has a massive effect. I’ll also take my galaxy projector to watch if I can’t brain at all. Worst case scenario is I sleep and rest a lot, and I can do that in any bed if I’m in a room by myself, which I will be. I doubt I’ll be well enough for visitors but I’ll let local people know if I happen to be.

How much I’ll be able to talk to Izzy (probably via WhatsApp) we’re unsure about right now. Definitely not while flying, maybe not while working or partying (apparently that’s also work?) in the US, but probably at the airports, in the hotel, and when just being a tourist. When she’s in the UK it’ll be similar to our normal when I can’t speak, and when she’s on the cruise we can talk when she’s in port, but only on sea days if she buys WiFi which we’ll try to avoid (she caved last time).

It is very weird to not talk to her at all for a day. Since we got married that’s happened twice – once when she was in hospital without her phone, and the first sea day on her cruise last year. If my sleep is all over the place it might be asynchronous, but that’s one of the benefits of using a messaging app.

Penguins are still good though. Floof (the baby little blue fairy penguin I saw hatch on a New Zealand webcam stream) grew up and left the nest, so I’m now watching another young penguin go through a molt in the same colony. I’ve also been watching the burrow cam of some Australian fairy penguins, where there’s two chicks going through their first molt. I love that I can watch them from bed on the other side of the world.

If I’m awake this (Tuesday) evening I’m planning to watch the Barbie film with Izzy. Hopefully I’ll also have more of a clue with what’s going on by then too. Until then I’ll keep distracting myself with penguins and looking up all the things Izzy will be too busy to do in San Francisco next week.

Danni

Happy New Year!

Danni, M.E., Physical Disability, Real Life

It’s 2024. My new penguin calendar says so. My tablet says so. Izzy says so. It does not feel like 2024, but the evidence shows that it is the case. I hope you all have a wonderful year, in whatever form that takes.

I had a good Christmas overall. I was well enough for Christmas dinner, including my birthday roast potatoes (I asked for them as a birthday present and was willing to wait 6 months for them). They are the best roast potatoes in the world. The lamb was good too 😛

I was also thoroughly spoilt with cards and presents. A huge Piplup (penguin Pokémon) Squishmallow, penguin chocolates, penguin Lego, a hat, Icecue (another penguin Pokémon) pin badge, magic snake puzzle/stim toys, the penguin calendar, and I’m sure I’m missing some. The messages in the cards made me feel so loved and connected. I am a very lucky penguin.

I saw Sammie just before Christmas, to give her both her Christmas and birthday presents. Somehow she’s now 20?! And studying for a degree?! She eventually wants to become a video game developer like Izzy. She’s at the point where when she’s asking for academic help I can’t give her it, but luckily Izzy can. I’m really proud of the woman she’s become. Seeing her was well worth the payback.

Also just before Christmas we got a video doorbell, as the doorbell we had for our back door had died and that’s the side most deliveries and people go to. I was concerned about it as it’s a small block of flats, but Izzy told me one of the other flats has one and I discovered we could turn the motion detection off, which both makes the battery last longer and means I’m not accidentally spying on the others in the block. I can watch it live though, which is great for feeling less confined. It also means if I hear the doorbell going, I can easily check whether it’s a hallucination or not without disturbing Izzy.

Otherwise it’s been quiet. Still not well enough to watch much, though I popped into a couple of Twitch streams over the holidays. The last couple of days have been a bit better for that, so I’m watching a little blue fairy penguin nest live stream on YouTube. Yesterday I got to see a chick hatch from its egg! There’s a sibling that’s still yet to hatch which should happen in the next day or two. The chick is still in its scrunkly stage, where it looks more like an alien than a bird. It’s adorable.

I’m due a B12 injection (turns out I’m deficient and it might be partially responsible for some of the neurological issues I’ve got going on, and some of the fatigue) and I’m hoping that once it kicks in I’ll be able to do more. I don’t like them (needle phobia), they hurt, and they make my mouth taste weird, but they do help me be less foggy and make it easier to stay awake. I also don’t want to make any neurological damage worse, which is what would happen if I didn’t get it. At some point I need to talk to my GP about a few other niggly things, but it’s not urgent.

I have some goals for the year, but I’m going to put them in a separate post so they’re easier to find when it comes to reviewing them. I’d also forgotten how much I’d missed blogging. Writing that last post helped way more than I expected, and I discovered people still read these. Thank you so much 💜

Danni

Things being bedbound makes easier

Danni, Physical Disability, Real Life

Not being able to get out of bed sucks. You miss out on so many cool, interesting or even mundane things, you need to rely on other people, and there’s so much you can’t do. Very occasionally, however, there’s an upside. Some of these are pretty universal, others might be more specific to me.

  • Surviving Whamageddon. The one that gave me the idea for this list. It’s easy to not accidentally hear the song Last Christmas by Wham if you control any music you listen to. Even easier if you’re too ill to listen to any music at all.
  • Not falling. Before I got so ill I could no longer get out of bed, falling was a frequent event. Even when I used my wheelchair, I’d sometimes fall during the transfer. Not being able to get out of bed and having bed rails means it’s been years since I actually fell.
  • Avoiding traffic jams. If you don’t go out, you can’t get stuck in traffic.
  • No commute.
  • Not being rained on. If you have a roof or ceiling above your bed, you’ll not get soaked from rain unless something has really gone wrong.
  • Staying out of the wind.
  • Not getting sunburnt. My skin burns super quick, so I really appreciate not having to worry about it, or deal with the sensory nightmare that is sunblock.
  • Getting out of many tedious chores. You can’t wash the dishes, clean the toilet or mow the lawn if you can’t get to them.
  • Breakfast in bed. Every day.
  • Only wearing uncomfortable clothes/shoes if you want to.
  • Having the perfect excuse to get out of unwanted travel. If someone wants to see you, they can come to you. Can also sometimes work for those who live with you.
  • Always having something soft and cosy nearby. My fuzzy electric blanket and cuddly penguins help a lot when I’m struggling.
  • Not having to get up when it’s cold to go to the toilet. And as I’m incontinent, if I’m well enough to watch stuff or play games, I don’t need to (can’t) stop in the middle to empty my bladder.

I’d much rather be well enough to get up and do things, even the boring things like cleaning or commuting, but looking for the positives helps make things easier.

Danni

I’m Still Alive!

Danni, M.E., Mental Health, Physical Disability, Rant, Real Life

Warning: Grumpiness Ahead

Long time no blog. Short version is I got Covid June 2022, and though the vaccines kept me out of hospital (just – breathing with O2 levels of 88% was not fun) it caused a relapse I’m still going through. I have a draft of a proper update blog post as lots of things have happened, but brain fog is preventing me from completing it.

I’ve gone from mostly bedbound to completely so. Since getting Covid I’ve gone out for hospital appointments and to go into respite, but that’s it. I miss being outside, even just to go on the ramp. Being too ill for visitors sucks. I make an exception for Sammie because the payback is worth it, but it’s months between her visits.

I was mostly coping okay with this, then at the beginning of November this year having a wash then my flu and Covid vaccines too close together has brought more deterioration. I feel guilty for struggling to deal with it. I’ve been much worse than this before, which isn’t helping the guilt as I feel I should be able to manage better.

I think it’s partially that once I’d recovered from the actual Covid infection, I still had things I could do that I now can’t, as the long term effects from that were more POTS and movement based rather than sensory. So I could watch YouTube, TV shows and Twitch streams. I could play video games using an adapted controller. I could manage going on my computer for a few hours a month. I even became a moderator for a couple of Twitch/Discord communities that have helped keep me going during the pandemic, which meant I felt like I was able to give back to them. Now I’m nearly always too ill, and it hurts.

I think Twitter imploding also hasn’t helped. When it shut down API access to third party apps, it stopped being the easiest place for me to keep up with people. Then lots of my friends left (for good reason), and they’re all spread out over different platforms. I do have a Mastodon and Bluesky account, but I’m struggling to use them even though I want to. Facebook is also overwhelming. Discord isn’t quite the same, being closer to chat rooms than a place to find friends updates and stuff, and there’s so many servers it’s impossible to keep up. I mostly stick to the two I moderate, with a couple more slow paced ones I look at when I’m able to.

I feel guilty because I know how lucky I am. Izzy is amazing, and I’m so lucky to have her. She still works full time from home, and yet tells me it’s okay to wake her up at night when I need things. Her job means our income is stable, and though we’re still on a low enough income to qualify for Universal Credit, it’s enough that we don’t need to worry too much about things despite the increased cost of living.

My main three care workers from the new agency I started with last year are excellent, and due to their stubbornness around wanting to keep to the same clients, most of the time I only have those three each week at set times, and it’s the same one for both daily calls. It makes a massive change from around 10-15 with the previous agency, and has reduced how ill receiving care makes me. I don’t even need a weekly rota (though I do have it in the calendar because keeping track of days is hard, and it’s a fortnightly rotation).

So many people with Severe ME are doing so much worse than me. Even I’m not even close to where I was at my worst. Most of the time I can speak, eat solid food with my fingers, roll over, and cope with a certain amount of light and noise. I have people who love me and believe in me. I feel guilty I can’t communicate with most of them.

To make it clear, I don’t think I’m depressed. I had depression for 12 years, so I know what that’s like. I don’t feel emotionless or very down. I’m mostly frustrated.

Before getting Covid I’d been improving, to the point where I could sit up for 2 minutes without vomiting or fainting for the first time in years. I had been planning to attempt a non-hoisted transfer on my 36th birthday. I can’t remember most of June or July of 2022, and based on what I can remember I’m glad of it.

Even after that, I adapted to my new normal. I figured out what I could and couldn’t do. I felt lucky that I’d stayed out of hospital, and that I could still do the things I enjoyed that helped me cope.

I think that now I can’t do those things (at least not without really bad payback) it’s why I’m struggling. Izzy’s doing her best to help but I can only tolerate her in my room for short periods and she has other things she needs to do. I think it being such small things that have made it this way hasn’t helped. Losing abilities because of something big (like Covid) is easier to deal with.

There’s one Twitch stream a week that really helps my mental health, so I’m prioritising that right now. There’s a segment called Little Victories, where everyone who wants to can share something they’re happy about from the previous week, no matter how small. Even before this relapse being there helped, but now it’s the main thing I’m looking forward to, and it’s worth the payback.

I’m also praying. Not always in words. I’m hoping with time I’ll get better, even if only a little bit. I know I’ll be okay, but also that it’s okay to be frustrated and upset right now. Not sure how to deal with the guilt, but I can work on that when I’m able. I’ve gotten through a lot worse.

I’m not expecting anyone to have read this, but if you have, I hope you’re doing as well as possible. There’s a lot of good in the world, and I hope one day I’ll be part of that.

Danni

Choices

Danni, M.E., Physical Disability, Real Life

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.