Emotions and The Importance of Talking About Fibromyalgia
I received my diagnosis of fibromyalgia about three months after the onset of symptoms. During that three-month period I was coping with fibromyalgia fatigue — and I didn't even know it.
I was tired all of the time and was falling asleep frequently. The fatigue was so bad that I would even drop off to sleep whilst typing on my iPad or halfway through a row of knitting.
Sleep was dominating my life, preventing me from taking part in my usual social activities. I felt as though I was letting people down even though I was trying to explain what was happening. Life was passing me by.
During that time I was desperate for the fatigue to be due to post-infection malaise, even though my doctor had mentioned that he thought it more likely that it was fibromyalgia. I kept as positive an attitude as I could – I would not admit to myself that there really was a possibility that it could be fibromyalgia, even though I told people that was what it might be. It’s good to keep a positive attitude, right? Well, no, actually. Not in my case.
When my GP gave me the diagnosis my initial reaction was one of profound disappointment. I was disappointed that I had fibromyalgia, but what was almost worse was that my optimism, the positive attitude that I had concentrated so hard on having, had been a waste of time. All that effort for nothing.
When I arrived home from the surgery I explained to my partner what the GP had said. I don’t think he knew what to think about the news. He knew less than I did about fibromyalgia, and I didn’t know much! As for me, by the time I had arrived home, I was feeling as though I had been given a life sentence. I was pretty scared, I can tell you.
Finding a Way to Share
Within 24 hours of being told I had FM, I knew I needed to write a blog diary about it. The feeling was a compulsion and I have a habit of following those compulsions when I have them. Consequently, I set up my online Fibro Diary on 13 November 2014. I have found that by writing the diary I am able to work through my feelings about having FM and about the reactions I am faced with from other people.
For me, it is important to be honest with my close family and closest friends about my FM and how it is affecting me. If I’m not honest, how will they know how I am? My Fibro Diary gives me the opportunity to explain how I am feeling in my own words, without interruption. It gives me time to explain in a way that helps me to cope with the illness, and also that, I hope, will help those closest to me to understand how it is affecting me, both physically and mentally.
I have time to choose the words and phrases that I think will best convey what I am attempting to say. It’s not always possible to do that when conversing with others, as they will be putting their own interpretation on what I am saying and projecting it back to me. I don’t want that. I don’t need that.
I need those close to me to see, and hear, and understand what I am trying to explain. I need to be allowed to speak in my own words – and I also need them to listen. I don’t need platitudes or sage advice. I am coping with my fibromyalgia on a day-to-day basis and, although sometimes I complain, it is working well for me.