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.