Fibro frustrations and chronic pain circles

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!

Keep smiling.

Long time, no blog - and here's why.

I know it's been a while, sorry!

A lot has changed. I no longer work for a start. The company I worked for ended my contract, let me go. Despite missing the money (a lot), it's been the best thing that could have happened. I could not have sustained the level of commitment I had always given to my career for very much longer anyway.

Our youngest son flew the nest, meaning that it's just hubby and me. So we got two fur babies to keep me company. They can be a pain in the bum but I couldn't be without them. Peggy and Polly are both Pug X Russell's.

My daughter got married last November. It was the most beautiful day. We have some fantastic and special memories which will last a lifetime.

My oldest son had a beautiful baby boy. Although our son broke up with his girlfriend, our grandson is truly loved and adored by both families, and we are all trying to work through the difficult times by focusing on what's best for Blake.

My hubby and I joined Slimming World and have lost over 6 stone between us. We were desperate to lose weight for the wedding. However, hubby still has a little more to lose and is continuing the struggle. Having the wedding to aim for helped us focus and since the wedding we've strayed a little, but we're still going. We've got a weekend away in June, so that's our next target.

Well I think that's all the news, so we're up to date.

Fibro-wise; I can't decide whether I've deteriorated because I no longer work, or I've improved because I no longer work (and have lost 2 stone)??

How can I be so confused?

When I worked I travelled by train to London 3 days a week, used the tube or walked from office to office, gave presentations to audiences upto 100 people, stayed in hotels most weeks, or drove around 400 miles per week. I have no doubt that I could not do this any more. I'm not sure if I might still have been doing this if my contract hadn't ended, although I was struggling more and more towards the end. I often used my walking stick when working, and was in my wheel chair all weekend. But I seemed to be able to push through when I needed to. This wasn't a conscious decision, it just happened. However, as soon as I relaxed (weekends and holidays) I would hit a massive flare.

However, because I no longer work I'm more able to pace myself, which means that I have to use my wheel chair less often. Although when I feel unwell I'm now able to go to bed - I have the choice. So rather than go out in my chair I choose not to go out - I'm pacing! I have an afternoon nap most days and even a little cold will have me bedridden for a few days.

I do know for sure that my cognitive ability has definitely declined. My brain fog is becoming more difficult especially when I'm tired. I can't find my words, my memory is terrible (both short and long term) and my co-ordination is rubbish. I feel that I have dumbed down! It becomes vey frustrating when I can't communicate in the way that I want to.

To add to my list of diagnoses, I also suffer from asthma, costochondritis and diverticulitis. I'm also currently undergoing tests for kidney problems. What joy!

Well I think I've rambled for long enough. I will try to post more regularly now, especially as I have more time!