Taking Back Control – Fibro Won’t Beat Me

If you’ve read this blog before, you might know that I have Fibromyalgia, amongst other things. I was diagnosed 22 years ago and in the intervening time, I got off easy I think. After a difficult couple of years, I was able to live my life almost as if I didn’t have it.

However, the last couple of years have been horrendous and culminated in me needing a walking stick to walk very small amounts and a mobility scooter to do anything more. It took over my life completely, as it does for most people who have it, at some time or other.

It brought me to rock bottom and I hated my life and the things I wasn’t able to do. Then I had a little chink of light. One day, for no clear reason, I didn’t need any pain killers. That’s all, but it gave me hope and I decided to take control of my life again. Ha, how easy it is to say that!

I set about sorting out a few things. A trip to the doctor and nurse later and I had secured diagnosis of and treatment for carpel tunnel and sciatica, a referral to a special scheme at the local sports centre and a referral to a nutritionist. Things also started moving in relation to the referral to a rheumatologist I had at the beginning of the year. He sent me to the sleep clinic and after various tests, I’ve been given a CPAP machine. Apparently I don’t have sleep apnoea but the tests showed that the machine improves my sleep quality – and it feels like it too. I’m getting some decent sleep now (although that makes room for more fibro dreams too).

the CPAP machine is my new best friend, even if the mask does make me feel like Hannibal Lecter!

the CPAP machine is my new best friend, even if the mask does make me feel like Hannibal Lecter!

I’m pleased to say that just one steroid injection seems to have dealt with the carpel tunnel and trigger fingers (I had constant pins and needles in my right hand and was struggling to hold a pen and worse, a crochet hook! It all seems back to normal now). The treatment for sciatica worked wonders to begin with and although it’s taken a backwards step this week, I’m hopeful that it will improve again. I think it was the reason walking has been so difficult this year and I hope that the pins and needles, numbness and pain from my hip to my toes will at some point go completely.

The referral to the sports centre was something I requested although I was quite sceptical about it. How could I possibly exercise when I could hardly walk and it hurts to stand? It’s been a revelation to me. I’ve been put on a “GP Referral Scheme”, which means that I get a personal trainer of sorts. In our first session, we sat and talked about my conditions, what effect they had on me (physically, mentally and emotionally), what I wanted to achieve and how this might happen. And then she showed me round the gym and put together an exercise regime tailored to me. 

Twice a week I enter the gym (which I have always found intimidating) and do an hour-long session which includes stretches, exercise bike, arm cycle, rowing machine, chest press, low row machine, as well as crunches, twists and squats. I am completely amazed by all this – not just of what I am able to do, but also about how good I feel doing it. An hour just for me. I put in my earphones, turn the rock music up loud and block out the world. I love it. I have realised that after my session on a Thursday, I am counting the days until Tuesday comes around again and I can go back!

Out of my whole workout, this is the bit I dread the most.

Out of my whole workout, this is the bit I dread the most.

As well as that, I am also attending an aquaerobics class as part of the scheme. As well as being pretty hard work, it’s fun, and the people (all at least a decade older than me) are very welcoming. I was accepted into the “naughty crowd” in my first lesson. I’ve also started taking the children swimming on Sunday afternoons. All three attend swimming lessons at this same sports centre, and so we go on Sundays for them to get some practice in if they want to, or just have fun. Because they have lessons there, they swim for free when we go as a family. I’m even considering joining the adults only swimming session one evening a week so I can get some actual swimming of my own done (with a 3 and a 5 year old in the water when we go together, I can’t do any swimming, I’m just on hand to help them should they need it, although they are all very confident in the water now).

So, I don’t really recognise myself at the moment. I’ve shied away from exercise for so many years but suddenly I am looking forward to it. Even when the pain is bad, I still go to the gym now, because there is help there to change my workout in ways to help with that. I feel really positive now. I bought layered exercise clothes, a pair of trainers (I haven’t owned trainers since I was a teenager), a teeny, tiny MP3 player that clips to my top and weighs nothing. I even have a tichel reserved for exercise!

the funky 2-in-1 top I bought for the gym

I don’t start seeing the nutritionist until next month, but I am hoping it will be a similarly positive experience that will help me build a diet that is both gluten-free and diabetes friendly (did I mention I was recently diagnosed with that? I had GD three times so it wasn’t a complete surprise; just something else to add to the list and conquer!)

I am determined to get my illnesses under control and to be the one who dictates what I do and when I do it. I know that when you feel really low about chronic illnesses, reading about someone taking control can be the last thing you want to see, and I have been there for a long time. I don’t know where this determination came from (maybe because I got to the lowest point FM has ever taken me?) but it appeared at just the right time for me to be able to grab it with both hands.

It’s not going to be easy or quick, and it’s not going to cure me, but that’s OK. I’m just after a decent quality of life that means I can do things with the children, take care of the house, go out and have fun – the things we take for granted until we can’t do them anymore.

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4 comments on “Taking Back Control – Fibro Won’t Beat Me

  1. So proud of you darling. So glad it’s helped you feel positive again. XXXX

  2. It sounds very positive! Is it private healthcare? My experience here was that there was very little and I felt like I was pulling teeth (and have had some spectacularly unhelpful/sympathetic GPs). I am hypermobile and so the dx is JHMS, I haven,t found Physio or hydrotherapy particularly useful – just getting to it has been a challenge in the past and as I’ve been up and down for decades (which suggests a cycle and something more than HMS going on) it seems that I have to pretty much wait it out for an upswing. It can be very hard to take control when you can barely lift your head for crippling exhaustion and pain – you are doing fantastically well. X

    • thanks Nikki. Not private, no. I’ve been lucky in that my GP is very sympathetic and ready to help, but not very knowledgeable about FM. I have to do the research and really go and tell him what I want. Until then he kept saying he nothing to help me, but once I found out what was helping other people, I went armed with a list of things I wanted to try and he was more than happy to help me do that.

      I know that six months ago, I could not have done what I am doing now – getting out of bed would sap all my energy, but since there’s been an upswing, I took advantage of it. I just hope it lasts long enough for the treatment and exercise to make a real difference.

  3. Yes, fingers crossed, it sounds like you’re doing amazingly well! X

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