Morning all

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?

Yes, those are masks on the sofa, why?

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…

Oops

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.

Oops. Ill give them a shout in the morning

New Drugs Time

I’ve had to change my weekly injection to a new drug as of today because the Byetta has been withdrawn as a prescribable drug due to supply issues.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.

Unexpected Flashback

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?

Ah, That Would Be The Problem…

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.

Oops.

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.

Oh, and it’s still January.

Minor Plague

Today hasn’t been wonderful – mostly due to one of those lovely hiccups that diabetes brings and that people don’t mention most. In this case it’s an upset stomach and nausea called diabetic gastroparesis – where the rate of the emptying of the stomach, and therefore digestion of food is affected. Not to put too fine a point on it, food starts to rot in the stomach and it’s deeply uncomfortable.

So I took advantage of having some time owed and went home early – and have been taking it easy while it sorts itself out.

Hopefully I’ll be back up and running properly in the morning. Yay.

Today’s Hooray for the NHS

I thought I was being so clever with the timings for my Exanitide – an injection I need to take once a week to prod my pancreas into waking up and producing insulin on its own rather than needing to inject shop-bought (so to speak). If I took my injection in the Saturday before driving up to Hartlepool, that would tide me over until I got home and therefore sidestep the need to refrigerate any medication on my travels.

Instead, I forgot to take it, or even pack it, and I’ve instead had to try and sort something out while i’m the opposite end of the country from my GP.

And this is where the wondrous NHS takes centre stage. I was able to phone their helpline this morning and explain the situation. From there they could look up my details, and were able to give me the number of a prescribing pharmacist local to where I currently am. I called them, confirmed a few details, and was able to walk round half an hour later to pick up what I needed.

For free.

All I had to do was show them my exemption card, and on the app where it showed that it’s a regular medication I receive.

So thank you again to the NHS.

Health Update

I had a diabetic checkup today and I’m pleased to announce it went well. Earlier this year I had one that showed elevated blood sugar levels and a further increase in blood pressure, and thus promoted an increase in dosages and frequency of checks from six months to three months.

Determined to get on top of it I made some dietary and habit changes, and did my best to stay on my new pills and potions regime. Today saw the payoff to that with a decent drop in both markers back to more reasonable levels, and tests for eyes and circulation in my feet both coming back well. My weight has even remained consistent – which is a bag of mixed blessings as I’d ideally like to lose another 10kg to be comfortable.

So all in all that was a huge relief, even if my resting heart rate still makes people wince. I’m hoping that losing some more weight as I take up walking longer distances again will help; but am mindful that another component may well be my generalised anxiety/PTSD twining round my depression and back again to feed on itself.

It sometimes feels a bit chicken and egg, so I’m trying not to focus too much on it, and hoping instead that the ongoing therapy and general physical health work help loosen both sides of it. In other words, stop worrying if the blood pressure and heart rate are exacerbating the anxiety, or if the anxiety is affecting the blood breasure and heart rate, and just work on both elements because it can’t hurt right?

The upshot of all this is that my sanity is still debatable, but I’m not a total physical wreck this month. After a month of aches, pains, and colds this is almost reassuring. I’m also back on the six month checkup routine again.

Knocked Sideways

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 panicĀ 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.

Call Me Sensitive?

Apparently I have a super power listed in my medical notes. I found this out today while having my annual retinopathy. Instead of the normal single dose of whatever gunk it is they stick in my eyes they gave me an additional dose of something else.

Apparently it has been noted that this is necessary because I’m extremely light sensitive and unless they slightly paralyse my eyes as well I react too quickly to the camera flash for them to get a good shot of the back of my eyeballs.

So there’s a thing that happened today, along with the stabby eye pain and dizziness that has kept me wearing sunglasses all day.

I did make some more fiction pages on the site though, so that was productive.