What I write and put onto the internet.
Long Covid Week — 120 Above is how I've decided I'll note that my Long Covid is ongoing and a big (bad) part of my life, despite anything nice I might mention. The pandemic is ongoing . Thankful for UK Traitors and Severance for giving me things to schedule and fixate on. Not entirely satisfied with the end of UK Traitors this season but I still massively enjoy the show. My one reality tv fix…
The books I read in 2024. See here for years 2019-2023 or you can go to Goodreads for from whenever I started on there. Here's how I build this page . Highlights A slow year but it is what it is (Long Covid). I really didn't like The Safekeep , it felt like a Lifetime movie (no offense). I didn't like Intermezzo , either. I didn't feel a real sense of the brothers' grief was conveyed and things…
I still struggle to know how I want to represent my weeks. I’m afraid of posting about things such that anyone gets the picture that I’m doing well or doesn’t know that in 2025 Covid is still a large and limiting part of my life. I am not doing well. But I try. It’s really hard and I struggle a lot. Having Long Covid and living in a world which thinks it has moved on from Covid sucks. I wish I…
2 years and counting of Long Covid. The first year was hospitalisations and lots of steroids. The second year has been immune suppressants and doctors who have given up. There is still no real idea how to fix me or an estimate of when I might be fixed other than “it could be years.” I’ve not worked for at least a year of the last two (I suppose, I don’t feel like counting at the moment). But I am…
The books I read in 2023. See here for years 2019-2023 or you can go to Goodreads for from whenever I started on there. Here's how I build this page . 2023 Shelf 2023 List No. Title Author Read Category Pages Autumn Smith, Ali 03/01/2023 Fiction 264 The Murder of Roger Ackroyd Christie, Agatha 13/01/2023 Fiction Mystery 214 All Our Yesterdays Ginzberg, Natalia 18/02/2023 Fiction 304 Heartburn…
Hello, again. I stopped posting nearly a year ago because the posts were really quite depressing (as chronic illness and extreme isolation are wont to do) and because I suspected that the medical leave insurance I had, meant to help compensate for unpaid medical leave periods, would think that if I could post a little blog then I could work and therefore not cover the time I had to take off of…
Very delayed posting this one but there isn't much to say. Loneliness is painful. Gutting. Like a zombie I get up each day and try to make up a reason to exist. The centre will not hold. Looked for kingfishers in two places, didn't see them. Bookbinding tiny books to occupy myself. Still itching, but it's better than it was.
So much time spent researching, dealing with insurance, doctors and trying to get my head just above water, to give myself some sense—real or not—that I should most certainly keep on on keeping on. It feels strange to text back , which can appear so normal and that I'm normal , when things are actually a bummer. I often feel so alone-squared because I'm literally (most often) alone without other…
No change was expected a week into the immunosuppressants and no change has occurred. The rash which turns to bruises continues to move around my body. My therapist finally brought up medication which makes me wonder if I'm—in the way that I can do—trying to not burden her with the truth of my feelings and experiences, because I'm shocked this has not come up before. I have to take a break from…
I've entered my immunosuppressants era. The awful, quality-of-life-destroying steroid era of the past few months is failed and over. My check-in Friday went as they usually do: entirely new doctor who hasn't read my charts and I have to build up and convince him of my universe from the start. He was stumped, called in a consultant and I begged for no more steroids. I read When We Cease to…
Spoiler Alert! Greetings from the future (week 40) where I am Out of Office—unwell again. But here's what happened last week (39). As I got closer to 0mg of steroids a rash started appearing and worsened each day. It was a dizzy, woozy and itchy week. Nevertheless, I pushed and tried to do as good as I could on my first week back to work after 2 months away. My team at work is full of wonderful…
I'm back in London. Seeing more than 6 people in a place at a time — incredible! But of course I haven't seen too many people at once, because I have chosen to live in the just busy enough part of London. I was depressed for a lot of the week. Steroid-dizzy at times. Back to the same old, same old. The British summer is weak enough that I didn't miss my tomato harvest! I now have too many…
I turned 40. Single women aren't supposed to do that. My feelings on this particular milestone in the year-of-ill are far too complex for the weekly update. I set the menu: pulled pork sandwiches with slaw and Carolina-style BBQ sauce, buffalo cauliflower, German chocolate cake and piña coladas with my family at my parents' house. I tried to find unproblematic postcards from our small middle…
Freezer loaded with bags of boiled peanuts. I'm 22 books-read into the year (illness brings extra reading time)! There were thunderstorms this week and I sat on the porch and watched them blow through. I was dizzier and more nauseous than usual, I assume just part of the weaning off steroids process. I had the strange left-side neurological (I'm guessing) weird stuff that I had in my first 3…
In my diary for Monday I wrote: "OK day!" I saw a couple of people briefly mid-week. I bought more books. Thursday I cried a lot, walked along the Thames and got stranded while the Overground broke. I finally got in touch with my GP who sent in a prescription for more steroids -- I'd had to decide myself to decrease so that I would make it through the week before seeing the doctors at the hospital…
I flew to Georgia on a booked-last-minute flight now that I'm done with appointments for 6 weeks, to see my family, my brand new niece and to not be so alone when weaning-off steroids and in general. This trip has been long delayed because of— waves hands —everything. I upgraded my flight because I'm freaking out about covid and wanted to share air with fewer people, even though I'd be masking no…
I've fallen behind again. Here come 3 posts! It's very hard for me to sit still and rest at home. It's partly because that's how I am and it's partly the energy side-effect of the steroids. So I put myself on a train and got out of town for a couple of days. It was great to have no dishes, laundry or new house chores I could possibly do and generally few options of what to do. Back at home, my…
As soon as I got back home from my short trip (therapy and doctors appts prevents me from truly getting away in a retreat-like situation for wellness like I'd like to) I fell apart, again. Did you see a woman sobbing on the pavement near St James' Park? I'm either manically high or low and most of the time I'm alone trying to battle it. If I can be around others it seems to be easier to cope. A…
Had private dermatologist appointment—she was incredible. After weeks and weeks now of not being able to get ahold of a doctor it was incredible to sit face to face with one. It took 7 or so weeks to book this appointment though so I didn't actually have any more dermatological symptoms to show. But she was so understanding and said my situation this year was harrowing . She commended the research…
I forgot to build the site last week so the short and sad weekly did not go out until today, oops. I'm on medical leave now. I chased doctors for instructions on how to medicate / care for myself in the wake of doctor strikes which left me appointment-less. It's exhausting. I am exhausted. It's hard to rally and flip a switch to: OK, let's make some money for ${BIGTECHCOMPANYIWORKFOR} , when…
Too depressed, maybe later.
Sorry, it's Tuesday again. Last week was the last week before I started sleeping at the flat I bought. God, moving is stressful. I've moved across the U.S. myself 3 times, within cities a handful more at least. This move down the street brought me to my knees. At the bottom of a dark pit. I'm not well, you see. Purchasing this one particular place and moving into it has been a 10 month process…
Heyo, posting on a Monday, that's improvement. Other improvements remain so-so. The steroids really sent me for a ride last week—it was not great. My check-in at the hospital took 4 hours. I have one this week too. A friend came over and spent and evening with me and that was crucial but there still was far too much of the maddening silence and aloneness. The weekend, however, was redeeming;…
Posting on a Tuesday again. Spent another day in A&E. After spending nearly a week trying to get ahold of my local GP. After I got off the 5 days of steroids my allergic reaction (which never completely went away) came right back and flared up, moving to my hands and causing such immense pain/burning/swelling. Especially in the mornings. Lots of tears. So I was back on steroids again Friday. But I…
I wrote but forgot to publish last-last week's! And I'm writing last week's on a Tuesday! I don't care. Life is a lot. I don't feel great! About 2 days after coming off the 5 days steroid course my allergic reaction has gotten worse. I was supposed to be referred to a consultant in "Allergies and Immunology" and the doctor I was referred to didn't want to meet face to face so just called me and…
I bought a flat and I'm on steroids again so I'm feeling great! I am still really itchy, rashy and the bloodwork is showing my body is still responding to an allergic reaction so back on steroids to help kick it. I have a call with an immunologist this week. After nine long months I finally got the flat I made an offer on. Dear reader, I wish it had ended there—but the seller ripped out the light…
I'm awful at posting these on Sunday. It's outrageous that it's mid June. This week's checkup at the hospital: friend got sick and couldn't go with me in the end but I'd spent all week glad that I'd gotten a friend to go with me and it was going to make things so much better and isn't it nice to have friends and I'll be ok and not so alone in this life. Anyway. This doctor had more time for me…
Welp, was bAcK iN tHe hOsPiTaL this week! My body flipped out over an antibiotic I'd had 3 times in the last 2 years and as recently as November. Face and throat swollen, rash and hives from scalp to toe. But I got to ride in an ambulance! I had the best EMTs, I would have hung out with them all night, if it weren't, you know, for my immune system being so fussy. They sure do run a hospital all…
A week off! I'd originally taken this week off in March, to celebrate finishing my 3 months of Covid recovery only to have to cancel it from hospital because it would turn out I wasn't quite done recovering . I worried about jinxing myself but booked the same trip and week off further out. So, 6 months after Covid turned all my days off into sick days and put me through the ringer, I finally had…
Cruising through the 8th month of being helpless in my own flat-buying situation despite showing up with my end in order. Friend in town and lunch outside was had! I did a bookbinding workshop. It was most of the day and I kept thinking of the show Jury Duty (which is great): a group of strangers forming little bonds when working on something together. People pick up on my easy enthusiasm really…
So many things to think about. My niece was born! I'm an aunt now. I love her. After a lull, a week with some activities and some humans: dinner with a friend in town, book talk with a local friend, current-events dinner hosted by group I'm attending in hopes to make friends, transit museum depot with friend in town. London had transit before my neighborhood existed and my neighborhood is still…
I've read that recovery is not linear. This week was a down week. Tired. A little poorly. No people (besides hairdresser and doctor). I was so, so tired. Perhaps I did too much last weekend (many miles walked), perhaps it's the hay fever and my severe allergies, it's definitely recovery and it's probably also the questionable state of my immune system now. I went to bed early and slept a lot. I…
I can't decide if and how I want pictures on these posts. I'm still feeling better and trying to find just the right balance of getting a little bit of life in while not compromising recovery. Am getting a lot of 9hr+ of sleep nights so my body is definitely working hard. Tuesday I went to a talk my MP gave—my MP! I didn't realise she was my MP until afterwards. But now I know! I went to see the…
I felt so much more like myself this week. The effects of weaning off the steroids having tettered off. I won't indulge in too much jubilation, 7 weeks ago when I last celebrated better health , I shortly thereafter ended up far worse off. The isolation of illness, singleness, newness to a country and remote work has been compounded by chaos at work leaving me on a team of 1 (for now). So little…
The check-in with the dermatologist this week: they agree with Rheumatology that it was Steven's Johnsons triggered by EBV. I told the doctor about the research I had on covid re-activating EBV and she took notes and said it sounds reasonable this happened to me. Having covid-related anything in 2023 means doing the reading, dot-connecting and advocating yourself. Have I mentioned this already?…
As @muan says, I'm "making modest websites." I don't even dislike my old site (now in this repo , at this address ). I love what I've called for years now website blue , the shock of colbalt (and here it persists). I like the type enough that it's what's on this new site, too. But I felt like something new and I felt like something really simple. So I've spent about two years just fussing with…
England is never vulgar. It is conventional, but not vulgar. Because it is sad it is never coarse. — Natalia Ginzburg Indeed nothing in the world is sadder than an English conversation, in which everyone is careful to keep superficialities and never touch on anything essential. — Natalia Ginzburg My biopsies came back! The doctor says I had Stevens Johnsons Syndrome (I'll let you Google it), as…
I went back to work, but not a great deal. Work laid off 200 people and my team was dissolved so there was no sense in working too much, anyway. I managed to get into a pretty decent—dare I say, good—headspace about everything. Life befalls you. We get through it. Progress won't be linear. I had my weekly checkin with Rheumatology, they're happy with how my rash is improving so we're moving me off…
Tuesday evening I'm discharged. The secondary rash was improving, no more spreading of the original rash and my bloodwork had normalized to a satisfactory level. We still didn't know what was wrong with me, though, so I was going home merely to continue the waiting amongst my own things. My things! A friend met me at the hospital and went home with me, we ordered takeaway and my other friend (and…
Wow. Everything has changed. I'm writing this update two weeks late, because life. Monday the 6th of March 2022. My period started. A few days early and heavier than normal but who can know with these things. Tuesday. In the afternoon, around 2:30 actually (I've become so accustomed now to tracking my health hour-by-hour these last few months), as I sat in the back room and looked out into the…
Here we go, things really popped off. Monday morning, despite the many good vibes sent my way, things were yet again worse. I ached so badly it was too difficult to sit up and drink water much less get up and even heat up some food in the microwave. I was in a really bad way. Temperature worse, rash worse and now my mouth is swollen and sore with bumps throughout. I went to A&E, this time pretty…
I spent 8 days in hospital this month (so far, let's keep our fingers crossed). I was pretty sure when I headed into A&E that I wouldn't be sent home so I thought, I'd better think ahead and pack well : I packed my iPad, phone and chargers. This was not quite good enough. I will give myself credit for wearing elastic cotton pants and a sports bra which was perfect. Here's what would have been much…
It's amazing what better health and more time spent with humans can do for one's spirit! I got nerd snipped and spent a lot of time on Ancestry solving a mystery on my Dad's side of the family. I want to share with you some absolute gems of names in my family (we're Georgia country folk): Sela, Alanson, Reather, Elco, Dama, Iola, Iner, Mabelle, Mozelle, Nettie, Bertie Lou, Lula, Lige . I could go…
I went to visit a friend who recently moved out of the city to a place called Orpington which means connected to Orped's settlement —I love English place names ! We ate snacks and watched crime documentaries and it was the best! I rarely get this kind of easy hangout time as a single person who lives alone and doesn't have a ton of friends in the new country she moved herself to in a pandemic.…
The GP said that most everyone that doesn't get over covid in 4 weeks gets over it in 12 and this was week 10. Things are getting better but symptoms still occur. I went to see Carly Rae Jepsen with a friend; this was my first "late" night in over a month since I'd set a strict recovery bedtime (and have been getting nearly 9 hours sleep a night). Carly Rae Jepsen is really the best . I went into…
I went to my first conference for work in maybe 3 years, sometime before the pandemic anyway. It was so good to see co-workers, peers and to try to make friends with the crew at the BBC R&D booth across from ours. Lovely mornings in town, too. Speaking of work. My work—in line with (I have a lot more feelings on this) the other tech companies— announced layoffs, it was a stressful week. I decided…
Gosh, I love red lentils! I made this soup this week (I love Anna Jones ) but more than any other soup I've made this one (I love Heidi Swanson ). Taxes, buying a flat, and covid-recovery (week 8) gave me plenty of stress this week. I stressed about work, too, unclear if necessary. I saw All the Beauty and the Bloodshed , it was absolutely incredible. I spent Sunday cleaning up all my gardening…
I saw Tar. I thought it wasn't as clever as it thought it was but soon I'll have spent an equal amount of time reading about it and thinking about it. It was week 7 of covid. My left side neurological (allegedly) issues dissipated a great deal and my left leg neurological (MRI proven) issues flared up to fill the void. That meant for most of the week I could walk but it required thinking about…
I suggested to a friend, "tell your brother how that makes you feel," to which he replied "I can't, I am British!" I brought back butter popcorn from the US in December because I thought I missed it. Now that I've had it again it's clear my heart now belongs to mixed: salty and sweet. Butter can see itself out. I'm still recovering from covid. It's week 6. It could be worse but it still sucks. I'm…
The books I read in 2022. See here for years 2019-2021 or you can go to Goodreads for from whenever I started on there. Here's how I build this page . 2021 Shelf 2021 List No. Title Author Read Category Pages Sorrow and Bliss Mason, Meg 1/5/2021 Fiction 352 Orwell's Roses Solnit, Rebecca 02/17/2022 Non-Fiction 320 These Precious Days Prachett, Ann 03/05/2022 Non-Fiction Essays 336 A Simpler Life…