I’ve been out of it for most of today as it was time for my annual retinopathy checkup. Its the one where paralytic and dilatory drops are put in my eyes so they can be checked for macular degeneration stemming from my diabetes.
In terms of my experience that means that after stinging drops are introduced, everything gets incredibly bright, hazy, and shiny so I can’t read anything or tolerate much of anything.
So I’ve been wearing sunglasses, dozing, and listening to audiobooks. Currently I’m enjoying rediscovering First and Only, the first Gaunt’s Ghosts book by Dan Abnett. Even fifteen hours later it feels like someone scooped my eyeballs out with a melon baller, and then pushed them back in my sockets – so I’m back off to sleep. See you on the other side.
There’s definitely something not right, but we’ll have to wait for the routines of blood tests and investigations to work out what it is. All I known is that having woken at seven this morning, I’ve napped for a couple of hours and headed to the shops, and it feels like three in the morning with added gentle dizziness.
So, my plan is to plough on steadily, and hopefully its something that a course of B12 injections will sort out because this feels like the last time my body stopped making vitamin D.
The joys of diabetes, kids.
So, if I’m a bit short with anyone for a while, I apologise. In the meantime, work and two D&D groups, not to mention my wonderful partners and extended Entourage will keep me distracted and remembering to hydrate.
Speaking of D&D, and especially Eberron, I’ve been working up some Draconic Prophecy verses as colour for my groups – and will share them for any GMs who want to reuse them.
I had a chunk of memory fall out of the sky this afternoon and smack me in the back of the neck – which was already feeling stressed with my brain being in a weird space as it was. The chunk of memory was of being in hospital when I was first diagnosed with diabetes – or rather it was from a swathe of time early in the weekend that I just have not been able to reliably recall or reconstruct since all the excitement hit. This may be a bit graphic for medical type stuff, so if that upsets you please miss the next paragraph as it makes me squirm thinking about it. The chunk of memory seems to have been dislodged by reading an article today about a DJ who ended up in hospital with necrotising fasciitis.
I remember the fever and flu-like symptoms and my legs ballooning and turning red – I vaguely remember friends rallying round late night while waiting for an emergency appointment in the morning – I think? I don’t remember much beyond snatches of conversation, a blink of an eye and talking with a GP, then being sent straight to A&E. I do remember having at least one set of drips in – and my parents were there, and my being very concerned that something was even more wrong than the doctors knew. I remember that my legs were bound and wrapped in bandages, and yet as soon as I put my foot on the ground I was leaving wet dark yellow viscous residues on the floor in the shape of my feet – and I’m pretty sure the only reason I wasn’t shrieking was whatever painkillers were already in me. There was a sweet smell of rot – and I remember grabbing my dad as he was the nearest and saying – “All I can smell is rot, and I’m pretty sure its me.” And that’s the last I remember – at least until I opened my eyes with two surgeons standing over me and telling me they’d got my kidneys and liver working again, and did I know I had diabetes.
Sixteen years later, I still have very visibly dark scarring on my legs. I don’t know the details of what they had to do, but apparently they did it on the ward because there wasn’t any time left. We only really found out about what particular bug had decided to complicate the number of things that had all decided to go wrong at once by reading the charts and asking pointed questions. Apparently its the type of bacteria that lives for years in the body waiting for an opportunity to wreak havoc and could have been with me since my many bouts of tonsillitis as a child. No one knows, and frankly its not worth tracing back to find out.
My brain being what it is, I can feel and smell it all over again – even as a memory – as well as echoes of the pain, though that could just be the aches of being fifty years old joining in to spread the love. As I look down at my legs, it makes me ever more grateful both for the extra years I’ve had because of the swift actions of doctors, but also for the ongoing care of the NHS – even if it does sometimes feel like gentle bullying for my own good to keep me on the straight and narrow.
My brain has obviously decided that I can cope with this memory now – and perhaps its a timely reminder to not take anything for granted. I’m pretty sure my loved ones will say there’s little chance of my doing that – and that alone is something I’m grateful for.
Today has been a day of light sensitivity, eye charts, and pupils the size of saucers – that’s right, the annual retinopathy exam to check that diabetes hasn’t started eating my eyes yet.
From long experience, I know these exams knock me sideways for the day – or at least the drugs do. The exam itself doesn’t take long, being an eye test and then some photos of the back of my eye. What does take it out of me are the drugs that dilate my pupils and partially paralyse my blink reflex.
There’s a certain hallucinatory feel to how I then see everything for a good portion of the rest of the day. There’s a diffuse glow to anything pale, an inability to focus on detail, and a sense of nausea and vertigo that competes with an eyestrain headache and eyeballs that feel hollowed out before being reinserted.
So it’s perhaps no surprise that I went to bed, and slept a few hours before the cub got in from school. An early night for me I think.
I’ve got tomorrow off, but unfortunately it’s just so I can have a retinopathy exam first thing and not have to worry about how the drops tend to knock me sideways for a good portion of the day.
So, tomorrow will not be a productive day. On the plus side though I’m not due to work this weekend so that’s an unplanned long weekend, even if there’s a chance I may get called on Monday about recruitment things.
And of course this is also the weekend where the Charleesi and her other half are moving into their first flat, so I’m looking forward to helping with that.
Writing is being perpetrated, the sun is shining, and I’ve had my diabetic blood tests done early today so the full morning is spread before me.
Not a bad start. I’ve had a coffee and some breakfast, can you tell?
After a restless night its good to be using some of that energy productively.
The blood test went as quick and easily as you might hope, despite my stupidly forgetting my mask (they had spares). It’s the first time I’ve had one done at the GP rather than wandering down to the hospital – and I may take the booking approach more often given how stress-free it was.
That said i have just remembered I didn’t actually book the follow up appointment with the nurse for a couple of weeks time, so I had better sort that out next…
I was just settling to sleep when I realised that I was supposed to have a rescheduled counselling session via Zoom today.
Now, even given I ate a whole bunch of grapes and knocked myself into a diabetic sugar snooze, there’s no sign of a missed call or querying text so I guess my counsellor forgot too – or at least got distracted by something else.
I’ve had to change my weekly injection to a new drug as of today because the Byetta has been withdrawn as a prescribable drug due to supply issues. I have now been switched to using dulaglutide under the brand name Trulicity at a dosage of 1.5mg in a 0.5ml solution.
Apparently this drug works in a similar way but also assists in the treatment of related cardiovascular conditions so thats a bonus. I’ve got to say, for something that looked complicated when I unpacked the first one I’m reasonably impressed by how fuss-free it ended up being.
Its another pre-filled pen device, but I think this is more akin to a traditional epipen in as much as usage consists of popping the end cap, pressing the circular end against my skin and twisting from locked to unlocked state before pressing the big green button.
There was a click, the feel of an impact like an elastic band and seconds later another click as the needle withdrew. And that was it. There was a small bead of blood that I wiped away and it was all done bar disposing of the pen.
I think that because there’s a wide opening against the skin that it simultaneously stretches the skin tauter and fools my nerve endings with what signals travel back to my brain: It feels the pressure of the barrel opening but doesn’t have the bandwidth to feel the needle jab in the same location. That’s my take on it anyway. Its certainly less of a rigmarole than the old pen and needle assembly was.
I think its just another example of how our medical tools and medications are continuously evolving and being refined. A positive thing to recall under the circumstances I believe.
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?
My partners and I often joke that we’re often surprised that I don’t rattle, given the number of medications I take on a daily basis. Nearly every day there’s some variation on a theme of “have you taken your meds?” or “do you need to order more meds?”. Once a week we also have a chorus of “have you injected today?”
Yesterday I realised that my erratic grumpiness and energy levels, and irregular sweats this week may have in part been down to forgetting to actually take my injection on Monday.
So my injection day is now a Thursday rather than a Monday. What fun. Because what better to do with a compromised immune system and a race inside my body to see what will fail first than to not take the medication that helps keep me operational?
Yay! Now I’m tired and want to sleep. But it’s only lunchtime and I’m at work, so that’s not an option.