Before being diagnosed with Fibromyalgia I thought I had a pretty good understanding of what it means and how it feels to have a chronic life-affecting condition. My husband, John, who died in 2001, suffered from a life-affecting during the entire 13 years that I knew him so, obviously, I knew all about what it means, didn’t I? Well, no actually, I didn’t! That was a heck of a shock to me.
Suddenly I can’t just do the things I have always done, exactly when I want to or for as long as I want to. Fibro doesn’t work like that. Yes, I know I have been suffering some of the symptoms for up to three months, but during that time I believed it was just a transitory situation rather than the status quo. However, with the diagnosis came the knowledge that the tiredness is not going to go away. Yes, it may ease off for a day or two – or maybe even longer – but it’s unlikely to go away forever. And, yes, I am very lucky that I am not suffering the pain that usually accompanies Fibro, but that doesn’t make it any easier to accept the tiredness. After all, when one is tired it usually wears off or is sorted out by having a rest or a sleep, but that’s not how Fibro works. For example, having had a good day yesterday, today I have been tired all day despite resting and having a sleep.
Not only is the tiredness frustrating for me, but I think it is hard for Peter to contend with. It’s not exactly exciting being accompanied by someone who can be suddenly overtaken by sheer exhaustion in the space of a few steps. That is often how it assails me, in the course of walking from one room to another in our modestly-sized home – a matter of a dozen or so steps!
There is also the effect of my tiredness on other members of the family. It can be hard for me to cope with the unexpected arrival of my son and his family. I need time to rest if I have been doing something. I hate that Fibro makes spontaneity difficult. I enjoy doing things on the spur of the moment but it feels as though I won’t be able to be impulsive in the future. I am hoping that is just because I’m feeling rather down about the diagnosis as I write this. Time will tell.
If anyone had asked me before my diagnosis how well I thought I would be able to cope with the tiredness, I’d have said “OK, because I have lived with someone who had no energy and my job involved visiting people who had difficult health problems”. How wrong was I? Discovering that this is it, that tiredness is a way of life, has had a huge impact on me and on my mental health. I have had to expend a lot of mental energy on working to keep on a reasonably even keel.
Apart from the tiredness, there is the guilt that accompanies being given the diagnosis of Fibro. The worry that one is causing one’s family and close friends. I know that my sons have been very concerned about me. They have shown even more consideration towards me than usual. My elder son is particularly aware of how I cope when something happens and acted accordingly. My younger son has been very active in recommending complementary therapies that may help. However, I know that they have been worried about me – and that makes me feel guilty. My mother and sister both have serious health problems but have also been worried about me – that also makes me feel guilty. I am supposed to be the strong one, the one who deals with everything, who sorts things out… but now I’m not. I’m the one whose body has just pulled the rug out from beneath her. I have failed in my duty. (I know that isn’t actually the case but it’s how it feels).
Just writing this piece is making me feel that Fibro is stealing who I am. I can’t dash off to the groups I belong to, can’t sit and do crafts for hours on end, can’t be impulsive, can’t be me. But… I AM ME. I’m still here. Can you see me? I’m waving madly. I’m trying to be me.