I keep mentioning it a bit in my recaps but I want to talk a bit more about it. I’m having chronic health issues. Chronic pain. Just calling it that is a new development for me, because I feel a bit of an imposter doing that. It’s only transient, right? it’s gonna go away and then I won’t be in pain anymore? well… not so far. And as it’s sucking more and more of my energy, and to be honest, mental health, I’m trying to embrace the label.
I want to say it started in 2020 but really it started in 2019, when I was diagnosed with gallstones. I had some issues to get that diagnosis to begin with, and once I got it, was told surgery was best but… there is a waitlist for anything public healthcare in Ireland. So I had to wait, and stop eating anything fat (as a cheese lover this was hard, and sometimes I just chose pain), and endure being curled up on the floor in the toilets at 3am because nothing, nothing would make it better until it went away on its own. I had a fun few nights in the cold in the A&E (that’s how they call the ER in Ireland) where they just sent me home because my liver wasn’t bursting so all we could do was wait for the surgery.
But that was all temporary right? I lived with the hope that I’d get surgery, and the flareups would go away, and that’d be it. Chronic pain, yes, but only for maybe a year or so and then I’d be all good again.
I did get the surgery and it took care of all of that, but as I was healing, some time during the first lockdown in 2020, taking everything slow and not even needing to go far away from home since we were all asked to stay indoors, the pain in my side and the nausea stayed, developed. My care team at the hospital did some tests but found nothing, and that was that. Just deal with it. It went mostly away after a while so I did leave it at that.
Then at some point in late 2020 I started realising that my joints were wonky. Surely people’s joints don’t pop and make walking painful like on a daily basis. Surely they don’t have painful knees when just lying down. This had been something I noticed on and off as a minor inconvenience, especially in the mornings, for years. But it was getting worse.
I’d asked multiple times for an ADHD evaluation but my GP figured the GI issues (nausea and all), focusing issues, fatigue, sleep issues, and the joints might all be linked so we put that on hold… Over a year later I’m seeing a rheumatologist who still doesn’t have a clue what’s wrong with me, except that something is wrong. I feel like I’ve had all the tests…
Now in 2022 it’s been constant, daily joint pain. I used to go on hikes and 25km a day walks and be mostly fine the next few days, I’ve now lowered my step counter to 3k. 4-6 is my maximum limit for being able to get up the next day, essentially. The nausea is back and worse. The tiredness is awful, I could sleep 16h a day and still be exhausted. I get headaches, muscle aches, on occasion weird chest/stomach/shoulder flareups that are unexplained but that even strong pain meds don’t help with. It’s been hell. I used to talk about spoons with regards to my depression, but it’s taken even more of a shape now. While depressed I could, with a great effort of will I didn’t always have, make myself do things. External encouragements worked. I could go buy a cheap pizza at the store if the thought of cooking was too much because that took fewer spoons in terms of depression. But now if I have nausea and joint pain and whatever else hitting all at once, I’m not cooking, I’m not going out and I’m not ordering in and getting down a flight of stairs to open the door to the delivery person either.
But in Ireland, one’s employer isn’t obligated to pay sick leave (unlike in most EU countries like France and Germany for instance). Missed days at work translate to loss of money, and I’ve got rent to pay (terribly expensive rent). My GP gave me a month and a half off work in January, which I have to say was sorely needed to deal with burnout and start to recover… but 2 weeks back at work I already felt like I needed another 3 weeks off. I’m just not recuperating like I used to before, take a mental health day and be going again for a month. I can’t afford not to work, financially. I can’t afford to work, for my health and mental health. I don’t have a diagnosis so there’s not much I can really do. I’m scared to switch jobs, and not be able to stick with it. I’m scared to go back to the office and catch covid and make everything worse. I’m scared to go on disability and not be able to make rent and have to move somewhere where I can’t bring my cats with me. I know that “just hold in there” isn’t a long term solution but I don’t see any other one…
There are still good things in the world – my cats, for one thing. My amazingly supportive friends. The library which keeps me well stocked in books to keep distracted, and audiobooks for when I can’t DO anything but lay there staring at the ceiling. But I’m not rich, I don’t have rich or non-toxic parents to go back to for help. I’m in the same spot as a lot of other people struggling to (start to) navigate a system that’s quite frankly hostile to disabled people. And I’m not sure where I’m going next.