You know the feeling when you just don't know where to turn? Well, recently I found myself stumped for ideas, without any direction and still feel that I have no idea what to do next.
My surgery is one where it's unusual and unlikely to see the same GP twice. However, I have started insisting on seeing one particular GP. Not because I'm getting the help and support that I need, but because I feel it's the only way for them to get to know me and to learn that I'm not malingering.
So that's my first fight every time I ring the surgery.
Having seen this GP a couple of times, I must admit I got quite emotional on a recent visit. I tried to explain that I didn't feel I was receiving the treatment or support that I needed. Her response, perhaps naturally, was to become defensive. Which in turn made me more emotional.
So that's my second battle; trying to explain exactly how I feel without getting upset or angry, which in itself is difficult because cognitively, I'm unable to communicate as eloquently as I used to, thanks to the dreaded fibro fog.
However, on this particular occasion I had prepared a list of all the things I had tried since my diagnosis around 7 years earlier. This changed the GPs attitude towards me. When she realised that I have been attempting to help myself, in fact I've gone to significant lengths to do so, she then decided to try to help me.
Unfortunately, this meant that she had to use her intranet to find out what the NHS recommended for fibromyalgia. This is when I realised that my third struggle was that I know more about my illness than the experienced, qualified GP.
I reverted to my list; my suggestions were that she refer me to the pain management clinic and / or back to my diagnosing consultant. She reluctantly agreed to refer me to pain management.
Given the title of this blog, I'm sure you can see where this battle is going. I finally received a letter from the pain management clinic to say that in Wales, their strategy was not to see fibromyalgia patients because they feel we wouldn't benefit from the type of help they can provide.
So I'm back to the beginning again.
Yes, I went back to the GP, and the only thing she could give me was a typed list of self-help suggestions that she wanted me to try. Things like nutrition, exercise, mindfulness; all things that I've tried with a little success but not sufficient enough to improve my quality of life.
As the saying goes; I may have lost this battle, but I haven't lost the war.
So I'm regrouping my resources, ready for my next fight, whenever that might be.
I would be interested to hear from others in Wales, perhaps your GPs have secured you more help. I need to know what I should ask for. All suggestions welcome!