Continued from Wednesdays blog, which can be found here. Thank you all so much for your loving support and interest.
The Healer Within: Living with an invisible illness.
If you’ll permit me to take you back, it’s time to let a part of my story unfold and speak of ME/CFS in my life, which I’d previously struggled with and was keeping hidden for so many reasons, mostly because I hadn’t fully accepted it and what it meant for me.
And so this is it, time to face my fears and for another warts and all section to be revealed.
(Please know that I am in no way medically trained, or an expert, I just know how it was for me and I’ve read and heard many an account from others.)
Illness is something most of us have been conditioned to just accept, something we have to accept when we’re diagnosed and learn to just live with it, to cope as best as we can.
It may heal or it may not and that’s the way it is. As I’ve discovered, the questioner and rebel in me said “oh I think not!” and that’s where my passion and drive lies.
Unfortunately the same drive is also where I’ve had to slowly learn to understand both balance and harmony, whilst still being able to surrender to how the illness has affected me. Whether I like it or not, ME/CFS has affected my life and this bit was not easy for me!
I’m only just beginning to realise exactly how much I unwittingly fought myself, because I was having to fight so much elsewhere too. I hated not working, being in receipt of Government sickness benefit and all of the hoops I had to jump through with that system too. When I often hear “but you look so well” from people who see me mostly on the ‘good’ days, then I found myself dropping into a wall of shame and secrecy around living with this, as though I’d done something wrong or was faking it.
For those who have no idea, Myalgic Encephalomyelitis (M.E.) or Chronic Fatigue Syndrome (CFS) as it’s more commonly diagnosed now is a long-term fluctuating, neurological condition that causes symptoms affecting many systems in our body, more commonly the nervous and immune systems.
According to Action for M.E., it affects an estimated 250,000 people in the UK and around 17 million people worldwide.
Sam an M.E. sufferer sums it up perfectly:
“It’s like having glandular fever, taking your glandular fever on an all-night drinking binge, then taking your glandular fever and your hangover and doing a 30km forced march over the Brecon Beacons. The way you would feel at the end of that is how it feels to have M.E. every day. It is like being on a carousel: you have ups and downs but you can never get off.”
As was my case from when my symptoms started at the end of 2014, patients in the UK will often have been living with varying degrees of symptoms for over 8 months before a diagnosis of M.E./CFS will be made.
I was finally diagnosed or as it felt, given the M.E./CFS label in August of 2015. For me and many others, it feels as though it’s the un-diagnosable diagnosis and comes with a sense of we don’t know what it is, it fits nothing else, so we’ll call it this.
I’m a lucky one though, apparently I would be considered moderate on the list of symptoms (NICE guidelines) despite it having completely taken over my life on every level.
Physically I’ve experienced reduced mobility and had to give up all of my hobbies (fire spinning, climbing, yoga etc) for now. I’m restricted in all of my daily activities due to having no get-up-and-go, I’ve stopped work, need continued rest periods, have brain fog like crazy. I’ve suffered memory loss, speak jumbled words at times, have digestive issues with bloatedness, food sensitivities, become exhausted from the most basic of household tasks and have a constant sense of flu-like aches and pains in my muscles. I tire from being in people’s company, even those I love and I will often experience a constant sense of underlying anxiety operating in my body, which feels out of my control even if I myself do not feel stressed as such. Everything in me sense-wise is also over-stimulated on hyper alert, my eyes and ears are sensitive to every noise and light too, which can feel draining with everything else.
It is not uncommon to experience highs and lows in symptoms with this. It’s like being on a rollercoaster, when recovery looks good and then for no reason it all trails off again. It’s like living with one very long unknown journey and I had to learn to make no apology when the symptoms chop and change in how they show up daily. I’m no angel with this one, it still pings at me now when I have to ask for my shopping to be collected, or for others to visit me to get together and be sociable; these are the two areas I’ve felt the most resistance towards, because to me they represented so much of my independence.
Like me, many ME/CFS sufferers will have long periods of time when they are stuck in-house unable to get out at all. Thankfully I can still walk, though wobbling a lot on bad days with vertigo too and yet I have also known a great deal of time last year when I was bed and sofa-bound for months at a time. A time in my life when I began to wonder if it would get better, or if I was seeing it progress into losing all of my mobility and hitting rock bottom with it all. I did see it improve again returning to the previous “level” of symptoms, I never thought I’d be so happy to celebrate having them.
Jennifer Brea has a great TED Talk about her journey, which I’ve included below. It has helped many of my friends understand me and I hope it may help you understand somebody else with ME/CFS too.
“The symptoms were real he said, but they had no Biological course.”
“It doesn’t matter what you once were, you can’t do it any more.”
(Jennifer Brea)
I agree with her Neurologist’s idea of Conversion Disorder as being a way to understand it. That became my driving force in how I’ve chosen to walk my path differently to many with this diagnosis.
I believe that when the time is right our bodies will show us what’s wrong, what trauma or part of our lives needs to be healed and YES, we are that powerful in what we can manifest in our bodies!
To be continued…
P.S. It also greatly affects my language skills, spelling etc, so not only do I risk sounding silly, it takes me forever to blog because I have to write, rest, review, spell check and re-read what feels like a hundred times before I’ll publish each blog. 🙂
❤ Beaming love and hugs to all today ❤
Trusting and Walking the Walk of Love! 
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