BLOG by Rachel Perry, 51, Brighton
Many years ago I was sent to a pain clinic which just made me angry.
They recommended that I merely had to ‘notice’ the pain and move on.
I mean… seriously, ‘noticing’ the pain really isn’t the issue.
I notice the pain all day, all night and have done so for almost every year of my 51 years.
My clinical hypnotherapist asked me to think back to a time when I had an absence of pain.
I really struggled.
I recall significant pain at 12 yrs old.
However, Mum remembers carrying me into A&E screaming in pain when I was about 3yrs old.
I would tell them that my neck hurt, or my elbows or knees, and I heard…
“You’re making a fuss"
“You’re being a hypochondriac”
“BUT YOU DON’T LOOK ILL!”
So I stopped mentioning it.
They weren’t to know were they?
I started to MASK.
I have masked pain my whole life, thinking I was being weak, feeble and not able to cope like everyone else was.
I was a Primary Teacher for 25 years, specialising in English and P.E.
I swam lakes, took spinning and step classes, did Pilates and yoga, walking, cycling, climbing mountains, windsurfing, running....but all the time powering through the pain, to complete and utter fatigue, exhaustion and damage to my poorly body.
After 4 cervical spinal surgeries, 12 other operations, ruptured tendons, and a whole host of seemingly unrelated symptoms and procedures, I finally received a diagnosis of Hypermobility Ehlers-Danlos syndromes (hEDS) in December 2021. My first reaction was anger that I had seen so many different specialists but no one had looked at me holistically.
As I sit here now, I can do a quick body scan of the pains and discomfort that I ‘notice’.
Everything from dizziness and motion sickness, insomnia, brain fog, piercing pain behind my left eye, scratchy throat, uncomfortable swallowing, pressure pain in my neck, dull, restrictive pain in my shoulder, shooting pain in my arm, neural pain in my hand, throbbing pain in my fingers, ruptured tendon...
Pain - Continual - Never ceasing.
Weakening pain under my shoulder blade, acute fatigue type pain in my thoracic back, unstable, ‘balancing on a marble ‘ type pain in my lower back and pelvis, over extending type pain in my elbows and knees, throbbing, burning pain in my toe joints.
I try and draw my attention away from the pain and focus more on what I can do rather than what I can no longer do.
I can’t run anymore, so I walk.
I can’t walk today, maybe I can swim?
I can’t swim, perhaps I’ll float.
It’s too painful to sit today, I’ll stand or lie down.
That pain clinic woman was right.
I need to notice the pain… and then, each part of each day, move on.
No, I don’t look ill, but if you stood in my body for just one minute you might understand.
‘You’re braver than you believe, stronger than you seem and smarter than you think’
I am so grateful that my daughter and I found the SEDS group.
Reading about the experiences of others has validated our symptoms, and helped signpost us to the support that is available in our region.
I am really looking forward to attending some specialist Pilates classes and other complementary therapies when they become available.