What I Learned From Having Fibromyalgia, but Not Fully Understanding It


I was kind of diagnosed by accident. I know it sounds ridiculous, but it’s true.

I hadn’t been in contact with my family for some time (long and sordid story) when I got a call. I don’t even remember who called me – I believe it was a departmental secretary – but I was told I needed to get to the rheumatology department at my local hospital as soon as I could, because I needed tests. I think I remember being more confused than concerned; I hadn’t had a recent appointment with my doctor, and I would have made a diary note if they had expressed any need to make a referral for anything, so I asked why they needed to see me, and was told that both my mother and younger sister had just been diagnosed with SLE (systemic lupus erythematosus).

I had no idea what that was, but I agreed to get myself over to the hospital later that day, then fetched out my medical dictionary and looked up SLE. Oh. Wow. OK. It sounded scary. I tried to prepare myself.

The actual assessment was anticlimatic. Blood tests, lots of questions and then a physical examination which proved to be surprisingly painful. Eventually, after a long wait in a very uncomfortable chair, the rheumatologist called me back into his office, and announced, “Well, you don’t have lupus, you’ll be happy to hear. There were some indications in your blood tests that suggest it may be present, but only in a very minimal way. So you may be a carrier for it (?!) but you don’t have active SLE.” That was a relief. But then he followed it up with, “But you do have fibromyalgia.” That baffled me, but… he handed me a leaflet and advised me to read it, then told me I was discharged, since there was nothing further he was able, or needed, to do for me, and sent me home.

 

Looking back on that experience now, I think that while it was slightly surreal and cold, as well as supremely uninformative, that consultant also did me something of a favor. By not describing all the symptoms and effects of fibro, he gave me no preconceived ideas or expectations about my future with it.

I was 27 years old and just diagnosed with a condition that was going to profoundly affect me for the rest of my life. I’d already been experiencing many of the issues connected to it without really understanding what was happening. His vagueness allowed me to continue as I always had – pushing myself beyond what I really should have been able to do, partly because I had no idea that was what I was doing, and partly because I was not prepared to accept I was struggling.

I didn’t realize for a while that this was going to be a lifelong situation, so I didn’t stop myself from doing and experiencing the things I wanted. It may have been that if I took a place on a training course that involved working in a stable yard, I would find myself physically exhausted and in pain every day. I just assumed I was unfit, and everyone felt that constant, violent, bone-deep ache and slept every spare minute of the day. If I found myself confused and had lapses in memory and concentration, well, at the time I had a great deal going on, and that was normal, right?

Basically, I got the diagnosis, read the leaflet… then did my best to completely ignore what was happening with and to my body. It was only later, when I realized that doing the simplest of things was leaving me useless for the rest of the day, that I understood. Washing my hair? Managed, but then my arms, shoulders and neck would be painful and swollen for the rest of the day, if not longer, to the point where picking up a cup or a pen was an ordeal. Housework? I’d do it, but then I’d be so painful and exhausted for days afterward I could barely move… and yet I did, because I had no choice. If I didn’t do it, it wouldn’t get done.

The constant cycle of pain, exhaustion, stomach problems, memory and concentration issues and weird body temperature fluctuations confused and upset me, but they were normal for me too, so I did my best to ignore them and get on with things. It was only much, much later, after a long and enlightening conversation with an understanding and informed GP, that I finally understood the full scope and impact of what I was dealing with. And, being a stubborn woman, I went ahead and carried on exactly as I had before – because I had no idea what else to do.

Having fibro has taught me many things. Yes, it has taught me this body has limitations. Sometimes I will find myself fighting it just to be able to feel some sense of normalcy. I’m not invincible, and there are some things that simply cannot be ignored.

lilac tree
The lilac tree in my garden.

It has also taught me I have far more strength and determination than I ever realized. I can tolerate more pain than I thought. I am sometimes too stubborn and independent for my own good. It has taught me to be creative and innovative as I find ways to be able to do things without causing a flare-up, or adding to one. It has taught me that sometimes, no matter how important I think it is I do something, what I need to do is slow down, stop. Take some time. I’ve learned that what I can’t manage to do today will still be there tomorrow. I’ve learned to better prioritize the things I need to do, and to pare down a “to do” list so I don’t feel so overloaded. I’ve learned, hard as it is, to say “no” and not over-explain. I’ve learned that some people will accept and understand my limitations, and others will not. I don’t have any control or any say in how they will react.

In short, I’ve learned I am living with a condition that affects my day-to-day life – not one that has ended it. I’ve learned how to be kind to myself, even when others can’t be. I’m not alone in having these issues, but how I choose to deal with them is for me to decide.

I do have my moments of depression about it. Of course I’d prefer to be fully healthy and not have to live with all of this. But the fact that I can, and have, is something I am realizing I should be more proud of than I have been. I’m doing the best I can, and I’m making the best of who I am. I’ve achieved so much already – maybe I should be making plans for a future where I find more cans than can’ts. I need to see my fibro less as a shackle stopping me from moving forward as I want, and more as a heavy pack… something I have to carry that can make it harder, but with which I can still move forward – if maybe a bit more slowly than I’d like!

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