I’m trying not to climb the walls, mostly because I don’t have any energy and my eyes are hurting all the time. Last night sleep was broken so that hasn’t helped the lethargy today either.
For the most part I’ve been reading and trying to write and draw, but my heart hasn’t been in it. Instead I’ve been drawing together a wide selection of fellow geeks and oddballs so we can support each other online. A discord server is up and running, and we’re planning an online game of Cards Against Humanity for this evening. Even if that doesn’t go to plan, we now have a lively chat group all reaching out and supporting each other.
Good deed for the day, I feel. I’m currently deciding how apocalyptic I want to start dressing. It’s a bit damp and wet out there for full Mad Max-style leather and studs, but I’m thinking something a bit steampunk and dramatic.
Well this morning started with a slight breathlessness and tickle in the chest and a bit of a dry cough – and the news that both Lady M and myr s aren’t feeling great either, so we’ve gone into isolation.
Lady M can work from home, and while my job is mostly public facing I can at least access email remotely to keep in touch. I had a long conversation with my boss and a co-manager to arrange immediate issues and then stayed in and posted a note to our local FB group for the estate. It’s lovely to be able to report that the messages of support have been heartening.
The hope, obviously, is that these are just colds, or if we do have covid that it’s mild enough that we can just get through and back to to normality – whatever that is. The local shops have imposed rationing in the face of widespread panic-buying so I guess we’ll see how we go.
Between my diabetes and Lady M’s asthma we’ve been mentally prepared to lock down but there is still a sense of things being out of joint. In the other household, myr s is concerned about their father and brother – both of whom have health issues – as well as the cub. Fortunately Lady J is in robust health, but has concerns for her mother who lives locally.
I’ve just woken from sleeping a while this afternoon. Lady M is asleep on the sofa as I write. We’re both trying to vary our days and activities so we limit how much walk climbing we do. I plan to adopt some of my freelancer days routines to break the day up in the process.
Fortunately I largely live as a hermit anyway so the mental shift isn’t too great. I’m mostly just struggling with a sense of guilt that I’m not out there working and helping people, even though I know that this is the sensible thing to do that minimises hurting anyone else.
Oh well. I now have no excuse for not writing something every day at least.
I’m still not quite sure where it came from. I think it was partly Lady M complaining of sore skin as I hugged her earlier. It sparked a memory of what I’ve long held as the missing weekend where I was diagnosed with diabetes.
Some context here for those who haven’t heard the bare bones: we’re not sure how long I was diabetic before I was diagnosed as I was largely asymptomatic beyond tiring easily, but I put that down as much to being very overweight and unfit. I developed a rash on my legs, and increasing swelling and redness and started being very unwell, but was stupid and didn’t go to the doctor. My wife at the time eventually worked out something bad was going on and got me in front of medical professionals
They promptly admitted me to hospital and when I came to I was told they’d got my kidneys and liver working again, had been at most a couple of hours from death, and did I know I was diabetic?
Which was quite a lot to take on at once. Especially as I promptly picked up necrotising fascitis in my legs while on the ward and lost more time as my system threw up its hands in disgust.
So the flashback was a very clear memory of putting my bare foot on the ward floor and leaving a pus footprint, and of telling my father that I could smell something rotting, and I was sure it was me. And the memory of the physical pains, and the smell, just were there.
And then I remembered later, post various surgeries when I was strong enough to stand up and go shower, where layers of skin fell off my legs like sheets of paper. Utterly painless, and fascinating, and I clogged the drain.
I think this is meant to be a sign of my brain feeling strong enough to start processing what it’s been suppressing. How wonderful. Yay?
Well, I say that but its actually been really busy. In addition to general post-MCM blues and tiredness I had a job interview for an acting up role (unsuccessful) and have spent a lot of time ferrying Lady M between walk-in centre, GP, and hospital appointments.
In addition to ongoing problems with her knees, we’ve also discovered that she is currently suffering from shingles. As a result there was a flurry of messaging and calling people we’d met recently to warn them – especially checking they’d already had chickenpox .
It has been a long-standing joke between myself and Lady M that, despite my having an incurable degenerative condition and knackered immune system, I usually appear to be in better health than she is on a regular basis. My diabetes is pretty well controlled, my blood pressure likewise, and I exercise (albeit probably not as much as I should) on top of having a job that has me on my feet most of the time.
Today, while not a hammer blow, that joke took a bit of a knock. Part of my treatment and monitoring regime includes a test once a year on the state of my eyes to check for the status of diabetic retinopathy. This, in essence, is damage to the retina due to changes in blood supply, oxygen, and nutrients.
I was diagnosed with diabetes in 2006, and so fall into the greater risk category for having had diabetes for an extended period of time. At the back of my mind has always been the knowledge that no matter how well I manage my condition, there are elements that will just happen over time. What I can control is the rate and severity at any point in time.
The letter I received today has confirmed that I now have background retinopathy – the earliest stages of changes to my retina – and I am assured that this is quite common. Diabetes has started to affect the small blood vessels in my retina and this means that they may:
Bulge slightly (micoraneurysms)
leak blood (retinal haemorraghes)
leak fluid (exudates)
I am assured that at this stage non of this will affect my sight, but the risk of more serious changes that will damage my sight is higher than it previously was.
If I sound calm about this, then it is this evening entirely an incorrect impression. While intellectually I know that I am doing all the right things, and that I will continue to do the right things while tightening things further, I am terrified. One of my fears – of losing my sight – is a step nearer to happening.
While I’m sure it is simply psychosomatic, my eyes today feel like they are burning – although that could be the moderate panic and tiredness wreaking havoc. I’m tired and wrung out. I’m sure tomorrow I’ll be able to see this from a more calm, considered, an rational place – but not this evening.
It’s late and I have to be up to open up a library in the morning so I’ll keep this reasonably brief as an update. Life has continued to be pretty full-on recently (oh who am I kidding, it’s not been a year for giving us much of a chance to get a breather), and I’ve really been struggling to find the inspiration to write. That includes this blog, and pretty much any of my other projects. I wish I could say it was as simple as just being writer’s block.
Without going into too many details, Lady M has finally got an answer to a number of health concerns that have been niggling away at her. While it’s not anything with a fatal outcome, she does have a debilitating chronic condition that she will have to manage for the foreseeable future. As a result I’ve been worried for her and trying to support her as best I can. The writing has taken a back seat to that the last couple of weeks.
There are all sorts of fears and worries that I hold on to right now. The best adjustments that I’m trying to do are those that allow me to balance being there for her while also making sure that I’m able to function too.
So bear with me if I’m a bit flaky or selfish from time to time at the moment. It’s me trying to do the self-care thing, and I’ve never been too hot at that.
Oh it’s been a good weekend – between the trip to see friends on the South Coast and an afternoon and evening on Monday of good company, good entertainment and comfortable levels of refreshment. If I hadn’t thrown my back out, it would rank as a pretty much perfect start to the week.
The back injury – before anyone gets excited – is pretty minor and just across the base of the spine around hip level, rather than the major spasms I occasionally get that lock up my entire upper torso. In a landmark of heroic actions, I was merely bending down to pick up some clothing off the floor when the muscles went ‘twang’.
Fortunately I have a healthy supply of painkillers, muscle relaxants, gels and heat pads to hand, as well as the skull-topped cane which always fascinates onlookers. Handy hint, dear reader, if you are tired of people asking what you’ve done to yourself, use an ostentatious cane and let them get distracted by its appearance.
The Wessex Pistols – I may have mentioned a few times before – have a cowpunkabilly sensibility and the flyers for the event had suggested people dress up to join in. This may or may not have been prompted by conversations with the band at their last gig where our cosplay contingent got very excited about the thought of us all just turning up as a motley collection of characters. We considered the gauntlet thrown and so most of us went for some variant of cowboy/girl, pirate or punk in our dress. Well, most of us at our extended table anyway. The Ladies M and Lady A went cowgirl, Lady P went punk, Lord S went Skapunk, I went piratically Assassin’s Creed, Lady G declined to dress up, and my daughter (The Charleesi) went as a bored teenager.
The gig started in the pub garden and moved indoors at half time when the weather turned, and I have to admit I was flying somewhat with the combination of painkillers and beer which made me really not care about the bad back any more.
It was a grand afternoon of silliness, in-jokes, refreshments, and good company – especially when the band set up right next to us for their acoustic-ish second half of the session. There were a fair few people who hadn’t dressed for the occasion, so it was good to have several of the band come thank us for making the effort. We’ve all been there so frequently that it would seem that they were not even remotely surprised that we would.
Eventually people had to drift away as the evening drew on, but it felt too soon to let it end. So that’s why we went and saw Civil War afterwards. Good film, great fun, plenty to geek about and it has fuelled more than a little conversation at the subsequent #Tuesday.
Oh dear, I’ve given my cold to both Lady M and Lady P this week, so you can imagine how popular I am right now. The snark, between sneezes, coughs, and blown noses, has been pointed, though there have also been rueful smiles so I suspect I may be permitted to live. At least the worst of it seems to come and go quite quickly, leaving little more than the usual season sniffle on the long tail-off. At least, it does for those of us not suffering from asthma, like Lady M. I’ll just be in the dog house over here if anyone needs me.
In other news, the Monday game nights are back up and running. For those who don’t know, we play D&D online using Roll20 and Google Hangouts, so at least I can’t infect any of my players with the plague through our screens. This is probably just as well given how many of them LARP, and therefore have access to padded but still solid weapons with which to beat me. The game write-ups will return, as soon as I can get my brain in gear – assuming I don’t sneeze it out first.
The last forty eight hours have been a gloriously chaotic experience that has seen me cruising motorways to the sound of Orbital; sitting in a Children’s Library voting on the 2016 Carnegie and Greenaway Awards; and arguing politely with doctors in the local A&E department. That doesn’t even include networking with librarians, breakfast conversations with my best friend’s daughter, career advice from an author, or patching up aching hearts.
I’d travelled down to the outskirts of Brighton on Sunday night so I could be relatively fresh for a CILIP event in the Jubilee Library. Librarians and Library Staff (yes, there’s a difference) from the South East of England were meeting to discuss and vote together the candidates for next year’s Carnegie and Greenaway Awards, epitomising the best in children’s fiction and illustration. Whichever way you cut it, this is a big deal, and very cool. I am very proud of having been able to take part in this process.
It was a good distraction from quite a severe mood dip that was partly fuelled by Lady M being unwell. When I got home and found she had spent a good portion of the day in the local A&E and was still in distress, the worry came flooding straight back. They’d discharged her without being sure what was causing her constant pain and things were not getting better. I knew I wouldn’t be able to rest, despite her saying she would have to see the GP in the morning, so I took her back.
We spent seven hours in A&E (that’s the ER for my US readers), and got home at about half five this morning. Lady M is recovering, so there’s a positive result, and we’ve been sleeping most of today to make up the sleep debt. We also had a visitation from Lady P, whose own illness has led her to do some dumb things recently. A quiet evening of tears, Netflix, and a hastily cooked meal followed.
And so, back to bed, and the hope that some relative normality will soon return. Well, normal for us anyway…