So I Don’t Know How To Deal With This Diagnosis…

A few days ago I saw my rheumatologist for bone scan results, expecting to be told there were things up with some of my joints, and maybe be prescribed a new anti-inflammatory, as the last two hadn’t made much difference. What I ended up finding out was that I’ve got a few things up with my joints/bones, but what’s probably been causing my increasingly numerous symptoms these last six months is the fact I have fibromyalgia.

I wasn’t completely blind-sided by this, since I’d looked up the symptoms days ago and myself, my partner, and the friend I complain about my symptoms to all agreed that sounded exactly like what was happening to me. One site in particular made at least part of me pretty certain, as their list of symptoms when fibromyalgia is aggravated covered the rest of my symptoms. The only things holding me back from being completely certain were that I don’t know what is defined as “widespread pain”, and when I tried pressing on the “tender/trigger points” they didn’t feel any more tender than usual (I would’ve used my partner as a comparison, but his pain tolerance is very different to mine). So I thought maybe I didn’t have it, or maybe I was pressing wrong, and went back to rolling my eyes at my partner suggesting a brain tumor as the cause.

By the time I got home after my diagnosis, I was still mostly in shock. And then the rest of the household got home with groceries, so everything was kind of forced into being normal. I was a bit angry at first, because do you know why I could feel any tenderness at the “tender points”? Those points have always hurt to touch. I can’t remember them not hurting. The first clear memory I can think of where they did hurt was eight years ago, but I have a terrible memory. In fact, the latest memory I have of myself being free of fibromyalgia symptoms is being a little kid getting up early to watch weekend cartoons. So my mother (who was my only form of medical care for most of my life) had ample opportunity to notice the “tender points”, as did the back specialist who stuck his thumb in one and declared it muscle pain.

I think the way I coped for two days was that I had an appointment booked with a doctor who is supposed to be great at coordinating treatment for complex conditions, or multiple conditions, and I’d seen her before and she’d been pretty helpful and encouraging with managing my insulin resistance. But the appointment didn’t go very well. I did my best to mention as many symptoms as I could, but they had smudged into a jumbled mess in my head and it was hard to remember them all and pick them out and explain. And her attitude had changed from before, where she treated weight loss as just a side effect of what I was doing to help my insulin resistance. This time weight loss was held up as a treatment for fibromyalgia, although I haven’t found any evidence of that, as well as the cause of my reflux, even though my weight has had no effect on it.

The first thing that annoyed me about this is that weight loss doesn’t equal health. The second is that the entire focus of the appointment was shifted from how medical professionals could help manage my symptoms, to it all being up to me. The third is that I’m already barely eating. I’ve only been having two meals per day because I’ve had to take antibiotics with food. Otherwise I mostly only have one meal per day, of bland food, so that my stomach pain and reflux isn’t too bad, and because I don’t have the energy to eat, nor do I particularly want to eat. So calorie restriction or changing what I eat are kind of out. That leaves exercise, which is laughable considering how my back and joints have been. A walk around the block once a day would limit what I could do the rest of the day, and my productivity is already lousy.

I understand why people don’t believe things are how I say they are, I get it, it’s hard to understand how things are for someone when they function completely differently to you. But denying that pain stops me doing things doesn’t make the pain go away. Ignoring the combined effects of fatigue and depression doesn’t infuse me with limitless energy.

I’m aware of my limitations, but when I try to plan around them I’m told I’m “feeding” them and doing things wrong, which can sap my motivation pretty severely. Reaching out for help has also proven pretty useless, as I don’t get what I need, and often things are just made worse. But I clearly do still have some will to live – or I’d be fleshing out a suicide plan rather than writing this – and a desire to get better. I cry a little, get upset, have my motivation sapped, think about how much I don’t want to go on, and then I still ask friends for cooking tips, and plan how to organise eating three good meals per day, and depression- and fatigue-proof those plans, and write a shopping list, and plan when to shop, and have a back-up plan. I’m lucky in this respect, and grateful for it.

I don’t know if I can handle this diagnosis mentally, emotionally, or physically, but I do know myself. I know how to get myself to do things even when my own body and mind are working against me. It may take me some time, and it may sometimes look or sound like I’m giving up, and I may not always be fulfilling the standards other people set for me, and I may need help sometimes, but I know that I’m going to try to be okay.

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