How Did I Come to be Living with Chronic Pain?
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Aged 18, to everyone’s surprise, I made a decision to completely change course and thus applied for Nursing college. My top 3 choices were all London teaching hospitals and I’m proud to say that after a rigorous interview process I was offered places at all. One odd thing did happen at St Thomas’s when we had our medical

examination – occupational health by today’s terminology. After showing the rather scary matron both sides of my hands, on turning around to be viewed from behind I was tapped on my shoulder. “You have a weak back, my girl” she barked. For an 18 year old that was enough to make the decision between Tommy’s and Bloomsbury School of Nursing (University College and the Middlesex) and I duly moved into the nurses’ home on Foley Street at the Middlesex hospital. How many times do you think I’ve heard the words of the battleaxe matron in my head over the years? Would I change my career choice with hindsight, particularly now I know that disc problems are common with Ehlers Danlos Syndrome? No, I loved it and I miss nursing every day. I might have made some slightly different choices though!
So, my first encounter with the surgeon’s knife came in April 1991 following nearly 6 months off work with back and leg pain. I had taken my nursing finals lying on a mattress, had waited the obligatory 12 weeks on the NHS before a physio referral and had undergone traction at the hands of a private physio. By the time I had a private CT scan, I was in Cauda Equina Syndrome. A local physio had told me that “we nurses were all the same complaining about our backs” when no improvement was seen under her care, and that “it was all in my head”! I was incontinent of urine, had non functioning bowels, footdrop and extreme pain!! The surgeon who ordered the scan and the radiography consultant were so horrified by the ruptured disc that they saw, that they rushed me in on a private list for the following evening at the Royal Masonic hospital. A “slipped disc” describes when the tough exterior of a disc cushion separating 2 spinal vertebrae splits and the soft jelly interior bulges out. In my case the whole jelly interior had ruptured out of the disc and the radiographer actually showed me my scan as he couldn’t believe I was walking. The theatre staff all gave their time for free and I was the youngest patient on the orthopaedic unit. I made a really good recovery and went back to work several months later. At the time a young Australian senior registrar warned Duncan that this back problem would come back to haunt me.
Life continued – carving out a career in Head & Neck cancer nursing and then palliative care, getting married, having 3 children. My back problem lurked beneath the surface alongside my “double jointed” issues, circulation and gut problems and migraines….but the majority of friends and acquaintances never knew the real extent of it – because I never let them. I underwent 3 caesarian sections as it was uncertain how my back would hold up during labour, and I was told off by the midwife when that upset stomach turned out to be baby number 3 when she told me to stop at 2!! But still things were good…….
Then during a night shift, the night that Obama was elected in for the first time, the searing pain returned. This time the pain didn’t settle, acute became acute on chronic……and so began my life with chronic pain.
A very moving story. I “liked” it because of your strength in telling it and all you’ve been through, not because I liked the horrors of Chronic pain.
Best to you.
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Thank you so much, I appreciate you taking the time to read my ramblings x
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Ditto, Wendy. I wondered if I’d find you over here.
xx,
mgh
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well done Clare – great blog
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Thank you! Keeps me occupied, ha,ha. Pass it on to any of your “new” patients, well done with the job!
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I followed your DM link on Twitter and your story sounds very like mine! As well as Special Needs Jungle, I write about EDS at notasadvertisedblog dot com. Have you found RareConnect yet?
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Hi Tania, what a small world as I have used Special Needs Jungle a lot over the last year for a SEN investigation in my role as governor! I have picked up your blog now and thanks for the tip as I hadn’t found Rare Connect. Really good to meet you – stay in touch! Claire x
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When are you based?
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Surrey
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Cool, me too! Farnham
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Thanks for stopping by and reading my post.
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Very inspiring!
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Thank you so much and for taking the time to read. Great to connect x
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What a wonderful blog, Claire. I especially loved your pain journey map. ❤ Lily
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Thank you! Looking forward to “chatting”!
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You are an inspiration and your family and friends too. Its great to know you
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Thank you – that is so kind! xxx
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Thanks for stopping by my blog! It’s so nice to connect with others who understand what we’re going through! Roseann from This Autoimmune Life
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Couldn’t agree more! xxx
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Claire, you are an inspiration. I haven’t taken on a chronic pain Series on my blog yet – even though it intersects with and exacerbates attentional issues. Next month is Chronic Pain Awareness Month, however, so watch for a ping from my Sept. 1 Awareness Calendar.
xx,
mgh
(Madelyn Griffith-Haynie – ADDandSoMuchMORE dot com)
ADD/EFD Coach Training Field founder; ADD Coaching co-founder
“It takes a village to educate a world!”
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So sorry you live with chronic pain but get a sense of how brave you are by reading this page. Makes me realise even though I have a wonky ear, (labrynthitis and never totally 100% recovered, but helped enormously by tai chi ) I have nothing to complain about.
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That is really sweet of you! It is all relative though isn’t it to what is going on at any particular time? As an ex ENT nurse, I know that labrynthitis is horrendous at its worst and often goes hand in hand with tinnitus – good that you are coping and managing. Thank you so much for taking the time to read! x
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Yes it is awful. A friend of mine is going through it and has been off work for ten weeks. When it’s bad it’s pretty unpleasant and depressing. Hope she gets better soon.
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Did you ever work in A&E at the UCH? I was in the LAS from 1979-2001, and went there often. Good to see the ‘old’ uniforms again.
Thanks for following my blog, which is appreciated.
best wishes, Pete.
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Yes!! Pete, I was in A&E at the old UCH in 1989 as a student – i am sure we must have been at 999 parties together…as well as the mess bars and the med students bar in Huntley St, just along from the Rockerfeller NH?? Funny thing is my son is now in his 4th year at UCL (engineering) so over the past few years has visited lots of the old haunts!!
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I mainly went to St Mary’s, St Charles, and The Hammersmith, so didn’t attend parties at the UCH. (I was based in Ladbroke Grove) But I’m sure we would have crossed paths at least once in the UCH A&E back then.
Nice to see life going full circle with your son too. 🙂
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I just re-read your introduction. It’s even more powerful the second time.
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Thank you Robert – so much!! (sorry for delay rough week) x
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I know about those rough weeks. 🙂
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Hi Claire
You have been nominated for The Sunshine Blogger Award! Thanks for being part of my blogging journey, and I hope you will be able to participate and pay this forward. You will find the post on my blog at https://bit.ly/2Z7Fcgt and published at 2am Vancouver, BC time August 16, 2019
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Hi Claire.
I know it is a tad early, but I wanted to let you know that I will be publishing a post on Tuesday, Jan 28th, at 2 am PST and I have nominated you for the Bloggers Recognition Award. Thank you for being in my blogging arena and your support.
I hope you will be able to accept and pay this forward, but no hard feelings and pressure should you not be able to do so, I fully understand.
The post will only be available on Tuesday, Jan 28th, after 2 am PST: https://esmesalon.com/bloggers-recognition-award-7/
Blogging regards, Esme Slabs from EsmeSalon
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