I know it’s been a while since I wrote a blog post. I haven’t been able to form the words for this post until now and still I’m unsure what I want to say..
Nearly two weeks ago I attended a hospital appointment with a consultant rheumatologist.
I’ve been having health problems for about three years now. Noticeable ones anyway. I’ve always suffered with debilitating migraines so I don’t count them, they’re just a part of life.
Prior to attending I’d got it into my head that he would look at me, say nothing was wrong and send me away. It’s what I’ve come to expect of the NHS after it took me two years to be diagnosed with a dis-functioning gall bladder and also their inability to understand what is happening with my son and the issues around his bleeding all over his body from his capillaries. It’s not really causing them any concern. Anyway, Imagine my surprise when I walk out with a diagnosis. The consultant diagnosed me with Fibromyalgia.
I had never heard of fibromyalgia until that day. He handed me a leaflet and told me to go and read up on it and then manage it with my GP.
Fibromyalgia is described Here
I’m in a strange place now. I’m happy to know that the pain and fatigue haven’t just been in my head, I actually have a diagnosable condition, but I now have to come to terms with the fact that this is permanent. I have to learn to live with it. I’m going to live my life with pain, using painkillers in an attempt to continue being mum, wife and working woman, plagued by fatigue and having trouble sleeping. I have nothing to show outwardly what pain I’m in or how completely exhausted I can feel. In fact I look perfectly healthy from the outside.
After the appointment I went home and I cried. The few weekends prior to the appointment I had been feeling particularly drained of energy and had said to myself that I would do something with the children the next weekend or a couple of weekends away and now I know it’s not just a passing phase because the weather changed and I can’t determine when it’s going to come and go. My kids caught me crying and were wonderful. They hugged me and told me they loved me.
To make matters worse, I had a really unexpected reaction on telling a friend of the diagnosis. Her reaction was to tell me I needed a second opinion, making it clear she thought I couldn’t possibly have this. She then went on to say, pre-empted by the phrase “Don’t take this the wrong way but…” did I think it could be the painkillers causing the pain as she’s read they can cause all sorts of side effects and painkiller addiction can do strange things. I told her I know my body and this wasn’t a reaction to painkillers and I don’t have an addiction. When I have good days, I don’t take the pain relief, but if I’m in pain, I really can’t function in my role at work without them. I felt so invalidated and this is also a reason the difficulty in my dealing with the information.
It’s been a couple of weeks now, so here I am, ready to talk about things.