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We want to hear from you: please tell us about your experience of the online community.

Hello!

ClaireSaul

Hello,
I want to introduce myself in the Dealing with Chronic Pain group - I am honoured, and slightly nervous, to have been asked to be the Chronic Pain advisor for the community.
I have a twofold history with chronic pain: firstly my personal experience with nerve pain goes back to 1991 when aged 21 I had cauda equina syndrome as a student nurse due to a complete rupture of a disc, resulting in major surgery. Ten years ago a "flare up" did not ease and I found myself "retired from work on medical grounds" and facing not only more surgery but also the benefits system. So I have experience of both ESA and PIP.
At this time I never dreamt that I would have permanent, relentless nerve pain and would take a cocktail of drugs that only weeks before I was giving my palliative care patients.
Two back fusions followed and confirmation that I have irreversible nerve root damage - this led to a referral to St Thomas's hospital, London for a spinal cord stimulator implant and I was required to attend an inpatient pain programme.
I also have the genetic illness Ehlers Danlos Syndrome, which affects my connective tissue. Having suffered dislocations from the age of about 8 and problems throughout my teenage years, nursing probably wasn't the best profession for me! A combination of the EDS and work probably led to my back problems. The EDS also gives me chronic soft tissue and arthritic joint pain, gut pain and migraines. Now registered disabled, I use a wheelchair to go out and am no longer able to drive due to problems with my autonomic nervous system (fainting). I'm starting to look greedy now with all these issues!
The second part of my history I have alluded to as I have been on the opposite side as a palliative care nurse and pain specialist. Ironically if I was still nursing now I would be better equipped due to my personal experiences. Any advice or comments I give will not be as a health professional - I am no longer registered.
I started writing about chronic pain several years ago and I have found blogging to be of enormous benefit to me and I hope to others. I look forward to chatting with you, getting to know each other and sharing experiences. Please be gentle with me as I find my feet!
Claire

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Comments

sleepy1

Hi Claire and a very warm welcome from me.

You have certainly been through the mill and having seen things from both sides of the spectrum I am sure you will have a lot of helpful advice to give. In my experience many practitioners do not fully understand "chronic pain" because they have not experienced it themselves, so in my book registered or not your words will mean so much more.

Thank you for giving your time to care. Best wishes Rosie

ClaireSaul

@sleepy1
Thanks for a lovely welcome, Rosie - much appreciated! Claire

Waylay

Welcome, and thank you!

What does "registered disabled" mean?

CockneyRebel

Hi ClaireSaul and welcome

I am the trouble maker and I bite when necessary

ClaireSaul

Waylay said:

Welcome, and thank you!

What does "registered disabled" mean?

Thanks for the welcome!
I suppose it depends who you talk to doesn't it, but here I was thinking of benefits & work. I was told I was "registered disabled" after going through the system with losing my job (officially "disabled due to medical issues" I think they said - more like a disciplinary actually!), claiming ESA and then eventually being put in the Support group.

ClaireSaul

CockneyRebel said:

Hi ClaireSaul and welcome

I am the trouble maker and I bite when necessary

CR

Hi CR,

Nice to meet you.....just let me know when you get your teeth out!!

Waylay

Ah, then I'm registered disabled too. (Although every year or so the DWP "cures" me for a while, at least until I take it to Tribunal. *sigh*)

ClaireSaul

@Waylay - don't get me going on the DWP and reviews.....and cures!! It took me passing out in the waiting area of the hired office for my PIP review to see any real action!! And that was from the receptionist! I am currently still in ESA Support group & PIP enhanced....until the next time!!

shazier

Hi Claire im new to the group and still trying to find my way around but wanted to say hi and sure i will be chatting to you soon if i can find you lol

GizmoTiddles

Hi Claire
I'm also new to the group and a little shy on conversing even online .
But not new to long term chronic pain ,having a major RTA as a child ,resulting in neck an spinal damage .
And then a special school due to long term absentee from mainstream schooling .And in the days where corporal punishment and a clip round the ear were a norn instead of proper treatment .
Fast forwards through the NHS system feeling just like Don Quixote finding so many windmills to tilt at.So many different opinions by different "specialist"
Recommendations made and then on long term DLA an now past the retirement age having to jump through the hoops the now call PIP but hey ho I'll probably get cured

but I've never walked away from a good challenge
Adapt and overcome
Look forwards to your post
Regards
Gizmo

Waylay

@ClaireSaul Oh man, ridiculous that it had to go that far to get something done!

Misscleo

Hello everyone. enjoyed all the talk.
I too have had many years od pain frim arthritis. Fibro and a few other problems.
Mine started 62 yeaes ago when a bone in my foot came thriugh the skin at school. The teacher did that hands on her face screaming like the mask.
The kids went for mr Davis (so glad). He took me to some big sandstone hospital that had coloured lines on the floor which led us to the x-ray room.
Moving on. In 1983 the rhemuatologist said id got fibro. Carried on working but husband and rhemo said time to give up in late 50's 57 me thinks.
I had both care and mobility high rate on DLA. Changingto pip was a bit of a nightmare. And mobility said ut would cost £22.ooo to addapt a car so gave up. My husband did the driving till he died.
Big shock hed gone to a funeral had a heart attack and died. No chance to say goodbye.
The rate at which freinds left after les died. 1 couple 3 weeks after came and asked if id found someone else to keep their car on the road i wont tell what i said but i did slam door in their face.
Im on morphine and codine neither really do anything bar make me fall asleep in odd places.