I have my diagnosis at last. Saw the rheumatologist and she confirmed what I thought – Fibromyalgia. Plus widespread arthritis (I knew about my knees already, but was surprised about my hands, elbows and feet, even though I should really have guessed given my knowledge over the years of treating patients). It’s a funny old word Fibromyalgia. What does it really mean?  As a physio I got lots of referrals with this word written on the form. I will be honest, and say that my heart used to sink, knowing that the patient (more than often a woman in middle age) would have widespread pain, fatigue, and was usually deconditioned from not moving much since the pain hit.

Now it’s me! And my God do I understand now………

I don’t know whether to feel better or worse now that I have a diagnosis.  Even though Fibromyalgia has been extensively researched, it is still poorly understood.  I have read and researched it endlessly in my quest for health, along with Chronic Fatigue which is very similar, and there are no clear cut answers.  It is definitely a ‘brain’ condition, rather than tissue damage, and is affected by all sorts of things, emotion and stress being my two challengers.  It can be triggered by huge emotional happenings (my dads death), and physical trauma (jarring speedboat ride the same year).  All I know,  is that for me,  I bloody hurt, ALL the time…  When patients used to say that their pain was ‘constant’, part of me wanted to say “but surely, not all the time?”  Thank god I didn’t say that to my patients, thank goodness I tried to help them to become more functional, better conditioned, more positive, and increase their ability to contribute and enjoy life.

Fibromyalgia is one of the cruelest ‘invisible’ conditions, because I am told constantly how well I look (sometimes on my worst days).  The symptoms can fluctuate even minute by minute, one time I can stand up and my legs work ok, the next, especially after sitting for a while, I can only hobble for a few steps, before I get going into my proper walking stride.  I try not to limp, I try not to moan out loud with pain, I try not to make grimacing faces when the pain hits.  Sometimes I can appear to do loads, then spend the next 2 days wiped out.  Sometimes I can do loads and feel much better.  Sometimes I can do bugger all and feel terrible…… There is absolutely no sense to any of it.  The more I try to make a sense of it, the more distressed I become.

In my dark and painful hours, usually in the early hours when I can’t sleep, I try and talk to myself in the way I used to with my patients.  Sometimes it helps, other times it doesn’t.

Onward with my journey to re-discover my fitter self!

As I am approaching my 60th birthday, I am filled with excitement! This is now the start of the next ‘chunk’ of my life, my proper Crone phase………. I can now embrace myself properly. Proper? I keep using this word, don’t I? Perhaps I haven’t felt ‘proper’ for a long time. I didn’t retire properly, I haven’t had a proper diagnosis for my pain condition (yet).

Perhaps 60 will be a bit like being a teenager again, because I will be a young Crone, with the next 30, or even 40 years stretching ahead of me (gulp!)……… I am certainly entering my 61st year in a better mental and physical state than I did my mid 50’s. It is surprising of me to say that really, as I still suffer from chronic pain and fatigue of the same intensity and constancy as before, BUT – I’m getting fitter despite it. And that is because now I dance again…….. I have been afraid of hurting myself by exercising for years. Even with all my knowledge as a physio, I was still scared. I didn’t want to hurt more, to sensitise further my already sensitive body. But I don’t hurt more (well perhaps on Tuesday’s, my Fitsteps class night I do), but it is so, so worth it. My legs are moving quicker, I can actually hop a bit, and do skippy moves, and now keep up with the others better than I used to. How bloody marvellous is that? Pretty bloody marvellous, I can tell you!

I want to be lean, and strong, and resilient. Even if I eventually get some sort of diagnosis from the rheumatologist in May, I will keep on this path now. I think the hyperbaric oxygen kick started this new attitude, and an absolute determined will to dance everyday. I usually dance to Honky Tonk Woman, Love Shack, and Brown Sugar, but change it around as well. I practice all the steps from my class -quick changes of leg direction, and Pasa arm flinging actions. I didn’t start out gently in the beginning either – because my spirit was strong, I just dove straight in – albeit slower than the rest of the class. My physio voice was saying “take it gently, baby steps…..” My warrior voice said ” “Go for it, dance your socks off…..” So I did! Hooray! I am so glad I did.

Sixty also seems like a ‘proper’ age to be retired (even though I’m a few years away from my state pension – grrrrrrrrh), so it might feel a bit more proper, and not awkwardly guilty (my stuff, I know).

I feel very blessed to be approaching 60, I have never felt like this about a ‘big’ birthday before. It seems highly significant and very positive. My 50’s have been difficult, and who knows what my 60’s will bring – but I’m going to dance my way through them with courage and grace ………

I have just posted a comment on a chronic pain forum that I subscribe to, in response to a woman saying that she is so tired of the pain and fatigue. There then followed about 30 negative responses from other chronic pain sufferers about how they felt the same, etc., etc. So I posted a response. It makes me realise how far I have come, despite having had another tough couple of weeks.

*POSITIVE POST ALERT*

It’s not just ‘tired’ though, is it? It’s treacle and fog, and deathliness and pure utter crappiness. I have fibromyalgia/chronic pain/fatigue/anxiety and depression – call it what you will, with no proper diagnosis,this has been my life for the last 6 years since my dad died and I had a bad jarring to my body on a speedboat ride on holiday that same year. But you know what – I have decided to get fit, despite the pain and fatigue. I have lost weight (over 2 stones) with the 5:2 way of eating, mainly cut out sugar, alcohol, potatoes and legumes, started an hour long dance class once a week, and dance every day to 3 tracks (usually honky tonk woman, love shack and brown sugar). I also walk my dog every day over 2 miles. I rest when I need to, ‘pace’ my days, and now have regular psychotherapy as I don’t want to go back on AD’s (I was on Prozac for 18 months, but they gave me an ulcer). Do you know what – my legs are getting quicker in the dance class, my body is moving again, it had definitely forgotten how, and I am not so frightened of moving it any more. Yes I hurt, but no more than before, so I am bloody determined to keep going! I also meditate and practice mindfulness, (the realisation that hating having pain is actually worse than the pain itself), and work on keeping ‘present’. Don’t get me wrong, I struggle, BOY how I struggle! But, I keep coming back to all the positive stuff as soon as I am able. If I have one of ‘those’ days, I sort of let it have me for a while, and then change the energy when I can with some movement based activity. Good luck. Let’s live our lives, despite the pain, life can be good. I believe that my pain has taught me an enormous lesson. I was a physiotherapist for 20 years, helping people in pain, and would never have believed that this would or could happen to me. Unfair? Yes! But who ever said life was fair……….. X

On my own again yesterday, it is strangely comforting having that metal womb surrounding me, and being imprisoned like that makes me go deep inside myself and into the very core of my being somehow. I sang all the way there and back again, singing songs from my choir days, dance camp songs, mostly in nonsense, Hebrew like words. Perhaps I am channelling ancient ‘stuff’.

This morning I had an insight after messaging my sister-in-law Jean, that even though I struggle with my ongoing health problems, at least I am truly ‘living’, and am experiencing the dark shadows in my life fully, as well as the joy, and all the shades in between. I can be truly grateful for all the people I love and who love me, I can see the beauty in this wonderful world we live in. I am grateful for the home I live in, and the life I share with Richard. I can weep for the suffering which is happening in the world, and pray for the misguided people who think that war holds any answers.

We went to see our friends Brad and Karen’s son Ben play in his band last night, and I felt immensely proud of him. He has been through some tough times lately. I have know Ben since he was 3 years old, and he has grown into a very talented and fine young man. As I looked round at all the young people, I realised that I was one of the oldest people in the room, and that I could actually be a grandparent of most of them……….. I realised though, that I still feel the same inside – the girl in the ‘hot pants’ was the 15 year old me – leaping about, young and free, and fearless.  I will hold on to that thought for the day “young, free and fearless”, yes I like that.

Now to felt some stones……….like you do!

Well, getting through my sessions now. It actually feels like a normal thing to do everyday!  I have been suffering from quite a lot of anxiety and low mood since the Paris attacks, and bad weather whilst on M62 adds to my angst. I was reminded by my friend Amanda this morning on Facebook about the part that the vagus nerve plays in our wellbeing, particularly increasing its tone it is the longest nerve in the human body, and is involved in most of the automatic things that happen in the body. Increasing its tone helps with poor digestion, anxiety, inflammation, depression, and a whole myriad of other conditions, most of which I have symptoms!  Anyway, deep diaphragmatic breathing exercise, talking, and singing and humming help to stimulate the nerve and bring up the tone. So today I didn’t have the radio on whilst travelling to Leeds, and I sang all the way there and back at the top of my voice.  I did lots of well known songs, my songs, musicals – the lot, even nonesense songs using vowel sounds, and guess what I have had a much better day!  Also sang whilst walking the dog round the block too. Must keep it up! Daily practice, as with all things is the key…..