Friday 27th January 2017. Haven’t counted down to a date like I did this one for some time. Sitting in the waiting room of the rheumatology department I felt nervous, scared, unsure, yet also had a sense of excitement, that today was THE day. I was going to find out what the freaking hell is wrong with me. The F word, Fibromyalgia, had been thrown around doctors opinions for a few weeks by now and today it was finally confirmed. I now officially feel like a proper patient (and it isn’t all bad, people do care).
I had a so many questions, but top of the list – when will I be better? The question that nobody can find the elusive answer to right now, and there isn’t much more that is as frustrating as not knowing. You can’t help but think, “will I ever get better?” This is impacted further by the fact that nobody really knows exactly what Fibromyalgia is, or how to treat it with the confidence of success. I’ve was referred for some treatment being told that this may take some time to come through, and given some advice on how to battle with my symptoms for the meantime.
I made my way home, slowly, thoughtfully, and dazed. Although I (sort of) knew this was coming it still bamboozled my noggin a little. I don’t really remember how I got home. A small piece of advice for anyone going to an appointment where they will be diagnosed with anything big or small, TAKE SOMEONE WITH YOU. Anyone. Otherwise it is a lonely and painful journey to find someone to connect with and show your emotion to.
I eventually found someone to hold me, when I got home, Matt was there with open arms (for the record, my appointment was really early and so he couldn’t make it, unless we let our 6 year olds take responsibility for themselves in the morning 😂). The moment I fell into his arms, my eyes leaked. And then flooded. For 30 minutes. I felt so sore and the anxiety and adrenaline that comes with this sort of emotion makes my symptoms a whole lot worse.
Many caring phone calls later I managed to pull myself together and make plans for getting better. A lot of fibromyalgia treatment is very dependant on the individual helping themselves and so that’s what I have to do. I was a bit manic over the weekend, reading research article after research article on what complementary therapies are proven to work and what other gentle therapies I can seek to treat myself. Once I realised I wasn’t going to get that information and I didn’t have enough money to do it all, I had no choice but to calm myself and look at just trying a few things at a time that may work, very much using a trial and error approach.
One thing I will not allow to happen (and I’m as stubborn as a mule) is to be defeated. Defeat is not an option here. I have a good life, a privileged career, a wonderful family and a world to explore. I am determined to live this one life on this earth to the full, I just might have to going the long way about it! I firmly belief that when you receive a diagnosis of anything (and Fibromyalgia is far from life threatening and a really big pain in the ass, and everywhere else for that matter) you can either let it define you or you can control it to the best of your ability. Changes will have to be made that’s for sure, but I am still me, a 33 year old mother and midwife, with a passion and zest for life, and I have a deep set need to be more than this.
I’ve started my own cobbled together “treatment” plan this week while I wait for referrals to be made and to be called back for “proper” treatment. I will share my results with you good, bad and ugly, and I am also hoping that my experimentation will help other people or those newly diagnosed fight back at their symptoms. Right now I am working hard at Gratitude and I’m finding contentment with the love that has been extended my way by friends and family (you are all incredible). Never in my life have I felt more loved (well, maybe with the exception of my babies looking at me for the first time!).
Please comment or share far and wide if you or anyone else may have any suggestions or advice to give. Or if you have anyone that you feel may benefit from following my journey. Comments and shares are always welcome and awareness of this invisible disease is needed.
Insanity is doing the same thing over and over and expecting different results. Albert Einstein.
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