By Lucy O’Keeffe
On the 16th March 2020, three & a half years ago my life completely changed.
I contracted the deadly virus that swept the world. Little did I know it would ignite a syndrome within me that had been laying dormant waiting to erupt. But it would also teach me a very valuable lesson!
I was an active child, competed in Gymnastics and Dance, I was often told it was time for me to slow down. I found it hard to rest, instead showing off my flexibility doing party tricks: bending over backwards, leg holds and flipping off any surface I could. I was a fit, active child and teenager, but I would catch any illness going. I had chicken pox twice – (I know right?!) A chest infection every winter, was ‘accident prone’ and bruised like a peach.
My mum would take me back and forth to the Doctors, I would complain of joint and muscular pains; the Doctors dismissed us and said:
“She is too active, make sure she is also resting” or, “It’s growing pains, common for her age”.
I had red raw lines all over my body from a young age, with no explanation. I would hide my body, the stretch marks of shame.
I stopped being as active at university - socialising and partying took over (oops), suddenly those aches become worse. Partial dislocations, subluxing of the joint; catching every illness on campus. The Doctors suggested ‘weakening of the muscles’ as I had stopped being so active.
As an adult I was in a viscous cycle of working hard, burn out, crash, rest and repeat. I didn’t understand why my immune system felt so compromised, why I had less energy than my peers. I kept pushing forward to keep up with society and the milestones that I thought I should be achieving; with a disconnect between my mind and body.
Covid made me bed bound, the world stopped and so had I.
I was bedbound for 6 weeks due to Covid. Then my appendix burst and the surgery wound burst open with infection. – but that’s another story!
6 months later symptoms persisted, I was forced to stop and really listen to my body. I couldn’t walk up the 3 flights of stairs to my flat, I couldn’t work full time, I didn’t have enough energy for the day, the pain around my body become so intense I learnt what ‘pain-somnia’ meant.
Long Covid had taken over my body, returned it used and feeling broken.
I pursued investigations, I was finally in tune with my body and I knew something wasn’t right. I saw a variety of professionals for individual issues, but no one would look at the puzzle as a whole.
I saw a Nutritionist who suggested my hypermobility could be causing issues with my digestion, had I heard of Ehlers Danlos Syndrome? I had never heard of the syndrome so started my own research.
It was a light bulb moment; the piece of the puzzle I felt like I was missing! I identified with the syndrome and took the information to my GP.
A rheumatologist diagnosed me with hEDS and discharged me in the same sentence. I had a diagnosis I felt validated but deflated: a diagnosis made my symptoms feel real and not in my head, but being discharged felt like I was back in limbo.
I continued my research and saw an EDS specialist. She was the most validating professional I have met to date, she explained,
“Over the past few years you have been through so much medical trauma, equivalent to being in a car crash and your body has been left in pieces. Take the time to process, rest and listen to your body.”
I agreed I had no reserve energy, I felt in pieces.
I wish I hadn’t waited for that validation of a diagnosis. I wish I had learnt to stop, respect my bodies boundaries and see rest as productive.
I kept pushing and fighting to remain independent and mobile, to ‘keep going’ as that is what society has taught us.
It shouldn’t take a diagnosis to rest and allow the process of healing both mentally and physically. It was time to stop fighting my body, end the cycle of pushing – through, instead; slow down and surrender to rest.
You don’t need a diagnosis to rest. Give yourself permission to rest, see it as productive. Make it your new mantra!
Comentários