Humbled

You might think that a diagnosis of a new chronic health condition would be easier to navigate for someone with my understanding and knowledge of healthcare. And that with last year’s diagnosis of psoriatic arthritis (because it had been a while since I’d added a new autoimmune condition to the stable), that I would apply the same attitude that has worked with T1D.

I did do that. And it hasn’t worked. My first mistake was ignoring the very simple and basic fact that psoriatic arthritis is not type 1 diabetes. Most people probably would have realised that and not made assumptions. I am not most people.

I’ve been quite humbled by the overall experience.

I don’t have answers yet to how to manage this new(ish) condition. The pain is still persistent. The meds I was first prescribed did nothing other cause constant low-level nausea. I wouldn’t call it debilitating (the pain gets that designation at times), but it was unpleasant enough to make me feel bleurgh (technical term) a lot of the time. And to question whether drinking coffee was a good idea.

I have a limit to what I can take, and impacting my love of coffee hits that limit pretty quickly. I persevered for about six weeks with the meds and then decided that I’d had enough. The nausea wasn’t subsiding and the pain hadn’t improved at all. I had been told that it could take up to three months for the meds to impact the pain, so the fact that my hands still hurt pretty much every day wasn’t completely unexpected. I weighed up the pros and cons, and decided that I wasn’t prepared to add constant nausea and eating struggles to daily pain. And so, we went back to the drawing board.

At this point, I learnt about the rather technical little dance that needs to happen when it comes to the escalation of psoriatic arthritis drugs. From a rheumatology perspective, I have to give it three months before stepping up the ladder to the next type of medication. From a dermatology perspective, it’s only one month.

So, that meant I needed to see a dermatologist to prescribe the next drug. He announced that I had ‘failed drug 1’ and therefore would be able to try drug 2. After mentioning my failure three times, I politely interrupted and asked if we could perhaps reframe the conversation to say that the drug had failed me. I’m sure he rolled his eyes as I muttered something about language mattering, but he handed me a new prescription anyway.

But of course, it was never going to be a simple switch. My rheumatologist agreed that I’d been right to stop drug 1 due to the constant nausea. But she suggested we try an injectable version of it before stepping up to drug 2. Also, drug 2 is good for the psoriasis side of things, but less good for the arthritis side of things. ‘Keep that one in your back pocket for now,’ she said. We had a very brief discussion about the practicality of taking the injection, but we both kind of sped through that because we figured that twenty-seven years of T1D meant that injection technique and hygiene wasn’t something needing much attention.

I opened the first box of drug 1.2 on a Sunday night. In the box was one pre-filled, single dose syringe. I have never been needle-phobic, so, I wasn’t prepared for the involuntary gasp when I removed the cap from the syringe. The needle was not ‘just like an insulin sub-cut’ as I’d been reassured by the pharmacist and rheumatologist. It was significantly longer with a smaller gauge (smaller gauge = thicker needle). It looked scary. And needles do not scare me.

I sighed, pinched the skin on my leg where I could find a decent amount of fat and poke in the needle, pushing down the plunger, muttering ‘ouch’ for no good reason because it actually didn’t hurt. Appearances can be deceiving when it comes to needles.

This was all about four months ago now. Has it helped? Nope. Not at all. In fact, the side effects have been even worse. My weeks have taken on a new pattern: injection on Sunday night. Monday – Thursday: constant nausea (absolutely no appetite) plus exhaustion to the point of needing a late-afternoon nap. Friday: start to feel better. Saturday and Sunday: back to feeling normal. And then it starts all over again.

Meanwhile my hands still ached.

So, we’re moving onto a new drug. Will there be side effects? Maybe. Will I see an improvement in the pain situation? Maybe. Will I feel like I have some semblance of control over my health again? Who knows?

I don’t ever remember feeling this way with diabetes. Insulin just … worked. I mean, sure, there is the too much/too little thing that we all know about, but it does what it is meant to do. It lowers glucose levels.

But this has been entirely different and I feel quite naïve thinking that I was simply going to be given a drug to treat this ailment, said drug would fix said ailment, and then I’d just keep on taking it.

All of this has happened alongside managing diabetes and other health things that are constantly there. I’ve been fortunate that I’ve managed to find great healthcare professionals (albeit one who needs some work on his use of the word ‘failure’). My rheumatologist is absolutely delightful and understands my frustrations. I like a doctor who doesn’t tell me to push through or simply accept the lousy things. I appreciate her listening to what I want and knowing my priorities. And I like that she understands that this isn’t my first rodeo when it comes to chronic health conditions.

And yet, even with the great HCPs, and the drug options and the understanding a lot about health and healthcare I remain completely at a loss and humbled, because right now, I am not getting better. And being in pain is hard.

Apparently, there are half a dozen different drugs for me to try. And each one needs at least three months of trialling to see if it’s going to work. I don’t want to do the maths and think about how long it could take to find something that actually helps.

Who knew that all it would take for T1D to seem easy was a new autoimmune condition? Or perhaps it’s just that almost twenty-eight years of T1D-wrangling has lulled me into believing I know what I’m doing. I guess it’s all relative. I know that really, I am generally #NotGoodAtDiabetes (let me count the ways), but compared to dealing with this new condition, I’m actually brilliant. How utterly humbling.