Sometimes it's better to light a flamethrower than curse the darkness

Today Facebook told me that two years ago I wrote this:

D said "if my second LFT's negative..." and even though I had no idea how he was going to finish that sentence, when it ended up being "wanna go to the pub?", I said "yes!" almost before he'd finished asking.

So: celebratory pub garden selfie.

He's clearly still easily tired but I'm so glad we could get out in the nice weather.

This morning I guess I was in a thoughtful mood, because I said:

D was the last to recover from this acute stage, so I am grateful to be able to celebrate two years of none of us having covid.

MB had persistent hearing loss that was especially debilitating for someone with as little hearing as she has anyway, but fortunately it seemed to recede after about six months. It can be permanent -- Paul Simon is no longer able to perform because of long covid that took the form of hearing loss.

Our continued carefulness, the sacrifices we make, the social ostracism...all the costs: financial, mental and emotional, continue to be high but they are worth it. This was such a terrible fortnight, full of worry and fear and isolation that was far more mental than it was physical. I was only a week or two into my new job and this really made me wear my heart on my sleeve in front of my team, who luckily were kind and supportive as they have been ever since. But oof.

I feel like I'm in a monkeys paw situation where I didn't want to talk to my parents every Sunday night but now my mom is fobbing me off any time she's doing one other thing on a Sunday and that feels bad!

Maybe I just can't be pleased.

Today she won't call because my parents are going to see my grandma (who I guess is still in the hospital?). Mom's email this morning says "She is doing good except they haven’t gotten back pain under control completely." Except my treacherous brain skimmed the first few words as "she's not doing good," argh. Didn't need that adrenaline spike!

Next sentence (my mom doesn't believe in paragraphs, it's very jarring) is "Then [my aunt] has COVID. She was very sick but since she got on medication she is slowly getting better." This is the aunt who lives with my grandma. She's had cancer two or three times and lots of other stuff. Can't afford enough healthcare. So she's vulnerable too. I'm not surprised she got very sick and is only "slowly getting better."

She and my gramdma have been diligently staying home since the very start of the pandemic. I'm so mad that their caution has been rewarded by her finally getting covid because my grandma had to go to the hospital, and no one is wearing masks even there. Not just my mom's Trump-voting sisters, but my parents too, they're no better now.

It's hard to reconcile how big a deal it feels like to me that my aunt finally has covid, when it doesn't seem like anyone thinks covid is a big deal any more. But this is really fucking me up. It means my grandma is the only person in my family who hasn't gotten covid (and she better not get it, jesus fucking christ), and I hate to think of how even the people who are most cautious might get it when they or a family member have to go to the hospital.

The LFTs did turn up yesterday but no one but me seemed well enough to even bother.

We did them today. I got a negative, mother_bones is faintly positive (and says she only feels like she has a bad cold now, which we consider a big relief), diffrentcolours more so.

So he's still isolating from us and masking when he is around us. This is sad because masks take a huge sensory toll on him, and I miss him. I've had to sleep by myself so much these last few weeks!

It was a little spooky doing the LFTs because it's been a while week since the other ones. Then I took a break from work to do mine, and it was the same today (except that diffrentcolours had his mask on while he was doing my test, and was sitting further away from mother_bones than he usually does...). I was obviously really surprised and upset by the results last week, and this week I was sort of unsure of how to feel; when the timer for mine went off, diffrentcolours said "congrats, Erik!" and (well I took a while to hear him because of the mask but even then) I just felt weird. They both still have symptoms. I don't want to go anywhere. Even with our trusty FFP2s.

I guess technically I could have gone to B&M to buy beer this evening after I sat out in the garden lamenting that there is no beer. (D made me a gin and tonic, because he's lovely.) But I feel weird about that too.

We had to pay for these LFTs, for the first time since I got them for my old job until now. So today I learned that the purchased LFTs can't be reported via the NHS website, like we'd always done before. So there's a couple of positive cases that won't be recorded. mother_bones can tell the Zoe app at least. But fuck this.

The weather was nice again -- it reached 80, less windy than yesterday but with a good breeze -- so I sat outside a lot. Enough to get a bit of sunburn, oops. Finished a library book (about mid-century USian kitchens, written by the YWA guest who talked about Martha Stewart recently). Made dinner for the first time probably since Monday; everyone was approximately awake and hungry enough to eat a proper meal.

I was feeling pretty emotional by the time dinner was over. Maybe Sunday-night blues, on top of everything else.

I had to talk to my parents and felt worse after I did -- we complained about politics a lot and thankfully we're all on the same side (something I can not say about my extended family, holy shit) but it sucks to dwell on, and also it looks like my mom is feeling a bit abandoned by the siblings on both her and my dad's sides of the family. My parents aren't able to let that go and prioritize relationships that are working better for them, they have these ideas about faaaaamily, and I hate to see them putting so much more effort and kindness into these relationships than they're getting out of them. I ended up feeling so sad that this is all they've got: that I'm not closer, that my brother's not here, that they never got to have grandkids.

I didn't tell them we have covid. I don't want to worry them, and I especially do not want to have a conversation about what we did to get it, or didn't do, or anything.

We ordered some LFTs to turn up tomorrow, time to start testing and see how recovery is going for us.

"Done with work until Monday" sounds good but I've been dreading this weekend. It's going to be boring and lonely. We'd planned to go Sparkle this weekend; it was my first chance to do it as a tran and I'd been looking forward to that.

In better news, I can taste food again. When I finally got myself some food (plain yogurt and a banana), it was already lunch time because I was dreading the unpleasant experience of eating food I couldn't taste. But I peeled a banana, and to my surprise I could smell it! Only a little, but still more than I had been expecting, I was just going to eat so that I could stop feeling hungry. But it tasted like a banana!

I nearly cried, I was so happy. And also very hungry all of a sudden, heh (I couldn't make myself eat much at all yesterday, just enough to stop from feeling hungry, so all that hunger flooded into me now that my body was motivated to do something about the signals). I made coffee and peanut butter toast, breakfast at 2:30 in the afternoon, because those were the things that sounded best.

I still don't think I can smell things on their own, but I can smell enough that food tastes like something while I'm eating it. And that's the important thing. Not being able to smell stuff is weird and annoying but I can be more patient about it now that food is okay.

I feel completely fucking normal today.

Which is good: no one else in the house does. mother_bones had a rough night and has officially tested positive today. Which at least means we can see about getting her some antiviral treatment.

Limiting her exposure to the virus is still important so we've got all the windows open again (the weather's a little less nice for it than yesterday but still not too bad!) and we're wearing masks when any two of us are in the same room. Which hasn't been a lot as I've worked all day and diffrentcolours has spent a lot of the day asleep.

I'm grateful to have work to keep me busy (and my manager is very kind and understanding; he made sure I knew I didn't have to work at all if I was ill but I'm fine and desperate for distraction). But my work is mostly solitary so it's made for quite a boring lonely time for me in a house where loneliness isn't usually a problem. Of course I'm lucky to have loneliness and restlessness to worry about, since I'm physically fine.

I'm aware that feeling fine today is no guarantee of anything tomorrow and I'm taking it very easy. I'm not expecting getting better to be a linear progression, and I'm very aware of the benefits of rest. I'm missing the exercise that's the only management tool I have for my mental health, but being restless and miserable now is better than having long covid forever.

For now I'm just glad I have been able to look after the others: this morning I conveyed two kinds of tea, phone charger, paracetamol, breakfast, ibuprofen, and a fan to the bedrooms where they were needed, and I took the dirty dishes away.

The UK has had a big ongoing study since the early days of the pandemic, tracking people's health/symptoms and test results. It's a big study and they seem to have done good work with it.

Anyone with a smartphone can take part in the study via an app. I've been doing it for a long time.

A few months ago, they started telegraphing changes that were going to widen the scope of the study: they were going to study other aspects of people's health, not just how it relates to covid. I don't know if that's related to them losing their government funding (around the time they were getting rid of every other protection and support mechanism) because, y'know, pandemic is over. Maybe it was just part of the zeitgeist right, because after all the pandemic is over.

Anyway, I was torn because the Zoe study was suddenly one of the better sources of case numbers when the UK stopped free LFTs and most use-cases for them also went away. But also, I am justnot that interested in participating in a wider study about health! It's not actually that good for me to monitor my health too much; it can lead to disordered eating, perseveration, and other bad mental health times. Also (maybe as a defense mechanism for that!) I just think that kind of thing is really boring?

It trundled along for a while with only a one-time "Health Profile" or something that it asked you to fill out (I'm a vegetarian, I have these chronic conditions but not those ones, it asked me my height and weight but did let me get away without filling those in because I will not willingly have anything to do with BMI) and just little tweaks, like it stopped asking you every day if you'd had a new vaccine and it made it quicker to report stuff that would be relevant every day.

I don't know what that might be for other people, but when I first got the app I told it I was a "health care worker" or whatever, so that meant the first questions I got asked were always specific to that: had I had face-to-face contact with patients the previous day (fundamentally a question about whether I'd been to work, which was always a fun short-term memory game; it can take me a worryingly long time to remember this! I have resorted to just checking what day of the week it is more than once when I am trying to answer this question), did any of those patients have covid (suspected or documented cases, or both), did I use PPE and if I said "sometimes" (which is what I say) or "no," it had relatively nuanced options for whether I would've used more, whether I went without, had to re-use stuff, etc.

Then the app goes on to ask me about tests I've had done (whether positive, negative, inconclusive, or waiting on PCR results), for a long time like I said asked if I'd had any more vaccines (it did track the flu shots last year, as well as covid shots), and then asked if I was feeling "physically normal" for me or if I wasn't feeling right.

Yesterday it asked me a bunch of one-off questions about my "usual self," just to establish a baseline like I always have sore eyes and anxiety and whatever. And then it didn't ask me anything else at all. I was really dismayed: surely they weren't giving up on covid entirely?!

But so many things seem to be. I despair. The covid disabled people's group has again slowly over the last few months and then more blatantly lately been expanding its agendas to include all kinds of health stuff. Disabled people have many important health concerns! But an abiding concern at the moment is still that we're not being given any way to actually "Live With Covid," we're just being expected to suffer with it and die with it for the convenience of other people.

Today, the Zoe app asked me if I felt like my Usual Self and let me tweak that (more bad eyes, less anxiety, etc.) but it also asked me about LFTs again (and I even had another negative one to report, before diffrentcolours and I went to sit outside a pub for lunch with friends, hooray).

I'm glad the app hasn't entirely given up on covid... but it didn't ask me any of the healthcare-worker questions. I can live without the PPE one (my data point of one me would indicate that the shortage isn't as severe any more as it was early in the pandemic), but are they not tracking workers who are in contact with covid patients any more at all? That would be very disappointing.

Spoilers: it's all okay.

But...

I arrived at work today to "we're doing LFTs." My stomach dropped. This is unusual. The occasion is that one of them has developed a symptom that almost certainly isn't covid but it's on the (new, expanded) list and they want to rule it out because if it's not this it could be a side-effect of a new med, it could be serious.

L was just finishing his test. I helped J do his (hilariously because I need help myself to do it! but luckily J was able to do the thing I most struggle with; he was clear about what he couldn't do and I could do that part).

Then as I was dealing with a complicated and shitty situation that L finds himself in, J said "Sorry to interrupt but...I have covid."

He doesn't! He misread the test.

We explained, we reassured him that it's okay he misread, L comforted him.

But damn none of us needed that adrenaline spike. I'd just gotten to work and I'd spent most of my walk there thinking I was so tired I could just curl up in the grass and have a nap. Indeed it felt difficult to do anything but that. I dragged myself there and for this. I was really worried about how much I'd crash when the adrenaline wore off. I'd already been thinking I'll have to isolate at home. J was thinking about how much this would complicate the potentially-urgent access to medical professionals that L is in need of.

It was a terrible and exhausting near-future to glimpse, however briefly.

I am so fortunate that this is the first time I have been in a room with someone who said "I have covid." It was so horrible.

Well I say fortunate and while luck always plays a part here, I've also been merciless in denying myself, for more than two years, so many things and people that I love and miss and am poorer and iller without. It might not be sufficient but it is necessary. This is why. I have "I live and work with vulnerable people" down to a rote phrase I can say to explain whenever I am not doing something, but this really underlined what the fuck I mean by that. J is probably the most vulnerable of them all.

btw, he misread the test partly because they're horrendously inaccessible! I've been complaining about that this whole time and the tests will never change. Especially now they don't exist anymore anyway (the guys were using earlier ones that they'd hoarded, in fact) so I guess it's a moot point but fuck inaccessibility. And fuck the only suggested fix to this inaccessibility that I've heard suggested so far which is just "well here's a different process that is if anything even less accessible." You can -- could, all the testing sites have been shut down now -- go to a place to get tested! You could take your potential germs out in public! But not if you're a wheelchair user! Trying to get J to a hospital appointment resulted in a thorough complaint about Patient Transport last time. It exposed him to much more ableism than a fucking LFT does.

Just thinking about all this stuff gives me a headache.

I made the DW community.

heard_community

Join if you'd like! Please tell any friends you think might be interested.

I keep being surprised by how exhausting I found today, but it really shouldn't be that surprising.

I slept awfully, again, I was awake half the night and had weird dreams when I did sleep.

I spent hours at the hospital with Stuart, waiting mostly in a room with a big TV blaring daytime talk shows at us. We sat down just in time to hear some TERF talking points, ( one of which is presented here with my frustrated reaction )

So that sucked, and everything about it being daytime TV was hard on Stuart: he takes the horribleness of the ads personally (especially the music they use) and the banality of (most of) the chat show content was distressing to him, like "new fashions in spring trainers." The TV was noisy and made it difficult for him to concentrate on conversation or whether he was being called by the receptionists.

I understand wanting some white noise to cover the confidential information being given at the reception desk, but they could just put the radio on or something. Stuart said when he was in this section of the hospital the other day, they had Radio 1 on. That doesn't even have ads! So that'd be a good start.

After we'd been waiting a little while, a staff member came around with surgical masks and told me I had to swap mine for one of those. I had one of my FFP2s on, which I know damn well is a lot better, and I really didn't want to take it off. I put the surgical mask over it and hoped no one would notice/yell at me. If anyone did notice, they didn't say a word.

I heard the same staff member later say the same thing to others in the waiting room: "you can't wear outside masks here," but that makes no sense! Making people with no masks or cloth masks swap for a surgical mask makes sense, because they're better than those. But my mask being from "outside" doesn't actually make it bad?

I was fretting in the back of my mind the whole time it was there that I might have to fight about this or take it off. So that sucked even though it ended up being fine, because I didn't know it would stay fine until we had left.

And then we had an extremely brief and extremely unsatisfying encounter with a doctor where I'm very glad I was there to help advocate for Stuart because even with the two of us it was nearly impossible to get his basic needs met. No one likes the feeling of not being listened to, but it's a particular sensitivity for Stuart (and a lot of autistic people I know; like Andrew says, it's a communication disorder, so I think a ton of autistic people have particular trauma around that, very understandably so), and this guy was really not listening and I was really angry on Stuart's behalf.

It took me a while to get home from that but when I did we were having a glorious sunny spell so I really wanted to get out for a bike ride and I'm so glad I did. Back tire (both tires really) pumped up thanks to diffrentcolours's new tiny air compressor, and off we went to look at good dogs in the park. We'd have gone further but everything was still so muddy from the endless rain that a lot of places were practically impassable.

When we got back I made banana blueberry muffins to use up some old bananas (and I've been letting the veg box blueberries pile up, which is not like me!). It was a lot of fun but left me exhausted for the rest of the day, I couldn't even make dinner. Oops. Luckily diffrentcolours could make it tonight, we had kievs and rice.