If brain fog and sensitivity make reading from a screen difficult, click here to listen to me read this blog on YouTube.
‘OK, let’s hit the keyboard again…
One and a half billion websites and counting. There must be answers out there somewhere! I just need to enter the right combination of words. Come on Google!’
Exhaustion
Pain
Insomnia
Restless legs
Treatment
Causes
Exhaustion
‘There must be answers, there must. I got into this, there must be a way out. Just keep going.’
Insomnia
Treatment
Help
Herbal
Pain
Tired
Fatigued
TIRED
EXHAUSTED!
F**K
‘Gotta keep going. One more try…’
Exhaustion
Aromatherapy
Pain
Massage
Pain
Nightmares
Exhaustion
‘What’s this?’
…
‘No, just the same old rubbish: no cure, adapt, change your lifestyle, relax, RELAX!!? No cure, adapt, CBT, PIP applications, no cure, pacing, cannabinoids, wheelchairs.
No wheelchairs! I’m a nurse and a mum for goodness sake! I can’t stay like this forever. People depend on me. I need to earn again.
Oh God!’
It’s 2018 and I’m sitting up in bed, with the heat of my overused laptop burning through the covers. It’s been another rough night of insomnia, restless legs, vivid dreams and night terrors. I’ve woken feeling worse than when I went to bed, and I’m sure somebody must have snuck in during one of those brief periods of sleep to give me a good beating. The day stretches out dismally into a hopeless future in which life carries on around and without me. I need to rest this morning, so I’ll have enough energy to drag myself out for the school run this afternoon. Then I’ll flake out on the sofa while the family watch Dr Who and laugh at Mum, who only ever sees the first 5 minutes.
At least I have a diagnosis now. Fibromyalgia.
‘OK, so what’s the plan then? What’s the treatment protocol? What do we do?’
‘Pardon?’
In the clinic I am stunned into silence, immobilised and infantilised as I am told there is no plan, no treatment, no protocol. I must learn to accept my diagnosis and adapt. My dreams of finding the answers shatter at the long-anticipated moment of diagnosis.
At home my mind spins in furious circles, rehearsing what I wanted to say.
‘I was a nurse, I am a mother, a carer, a fixer, a worker, a volunteer on every committee, and you tell me to adapt? Adapt to what? A lifetime of dependency, watching my children grow up from the side-lines? Adapt to coming downstairs on my backside because I have knives in the soles of my feet, a heart that pounds when I stand? Adapt to packing a bag for the day because I can’t face climbing the stairs again until tonight?
(Chocolate. I need chocolate.)
Adapt to being the patient, no longer the nurse? Adapt to watching every penny because am no longer fit to work? Adapt to being a failure, weak, dependant?
I’m the one that people rely on and yet here you are implying that I’m lazy; it’s all in my head; if I’d just relax…
You don’t see me anymore. I’m just a nuisance, the patient who won’t go away, the boomerang. Oh God, I’m the patient the GPs used to pass on to me when they got fed up of having no answers. How did that happen?'
Fast forward to 2022 and I’m standing on the top of the Campsie Fells in Scotland. I have climbed the steep grassy slopes to the cairn at the summit and can see the world stretched out beneath me, from the Forth Bridge in the East to the Isle of Arran on the western horizon. The misery of illness, and my old life of pushing through to fix the world is far behind. The blues and greens of Scotland blur and swirl through the tears of joy and relief streaming down my face. It’s been a long hard road, and there is still no ‘cure’ for my fibromyalgia, but I’ve fought my way through to full recovery regardless. Recovery is real. Healing is real, and I found people who could give me answers, who guided and supported me through the changes I needed to make in order to heal myself.
No more pain, no more brain fog, my legs are only restless to climb the next hill. My heart pounds and my breath heaves naturally in response to my climbing. For the first time in my life I welcome that pounding and puffing. I am alive! I am unfit, but I am well and getting fitter.
This may be a familiar story for you, whether the terms you enter into Google are fibromyalgia, Long Covid, ME, CFS, or post-viral syndrome. What I know now, after working my way through to this full recovery, is what I knew then as a nurse, trained to see and respond to whole people, not symptoms. These are not diseases with a single cause, they are syndromes: labels attached to collections of symptoms that medicine with its microscopic focus has no answers for. These are descriptions of what happens to your body when years of pushing too hard, physically and emotionally, finally catch up with you, when the final straw – a virus, an operation, a bereavement – tips you into a cascade of collapse.
Doctors always ask about your symptoms. Nobody ever asks, ‘What has happened to you? What brought you here?’ Medicine, massage, aromatherapy, herbs, all help quell the symptoms for a while, but the deep roots remain hidden until these bigger questions are asked. We feel better for a while and kid ourselves that we have recovered, or are ‘nearly there’, until the next challenge floors us again. How many times can the spirit take being crushed like that?
One thing is sure about recovery. You need hope, real reasons to believe that recovery is possible. You need contact with people who have walked this hard road ahead of you and can shine a light in your darkness. You also need to fan that spark of anger at what has happened to you, to fan it into a flame that will give you just enough energy each day to take one small step towards recovery.
Why not let that one small step today be a final url on your laptop, to book a free 30 minute discovery call with me so that I can ask, ‘What happened to you?’ Together we can explore how I can support you on your next steps away from just adapting and towards recovery.
