Ehlers Danlos Awareness Month Challenge! Spread the word and tell the world about EDS

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome

EDS AwarenessTake the Challenge! (1)

 

This challenge has been started by Tayler @strugglinsmol on Twitter and she would very much like all zebras to take the challenge and help spread awareness!! Please share, tweet and join our #FragilebutUnbreakable challenge!

Here goes:

  1. Hypermobile EDS
  2. Officially in 2012 aged 43, unofficially aged 20 as a student nurse orthopaedic surgeon told me I had Marfans syndrome (another connective tissue disorder),  also hypermobility & Mum’s and my long limbs/fingers noticed by a GP when aged 7
  3. POTS, migraine, Raynauds, difficulty regulating body temp, gut motility probs/gastroparesis, chronic back pain & cauda equina syndrome.
  4. Very….slightly less so now than as a teen!
  5. Moderate
  6. Wheelchairs, walking sticks, crutches, motability car
  7. Spinal cord stimulator implant, heat, drugs, more heat, cushions & stretching, yet more heat
  8. Mainly all back surgeries – laminectomy, pedicle screw fusion, redo of fusion with extension, spinal cord stimulator implant, x3 c/sections, minor shoulder & knee exploratory
  9. For surgeries, pain management, gut management
  10. Normal now is constant back and leg pain due to nerve root damage – managed with spinal cord stimulator, limited mobility, worst POTS symptoms in the morning after breakfast, at least one dislocation per day and generalised background pain, poor stamina, nausea & slow gut, unable to feel when bladder is full
  11. Flares vary – generally pain is far less predictable & out of control, brain fog/memory problems, fatigue, POTS flare when unable to even sit up without fainting, blood pooling in hands and legs, breathlessness, lack of concentration, visual and smell disturbance (migraine)
  12. Fab GP, Pain specialists, Cardiologist, Rheumatologist, Orthopaedic surgeon, Gastroenterologist, Urologist……
  13. In our local small supermarket with hubby – I had walked with a Smart crutch, but as we got to the checkout those familiar POTSy feelings came and I was unable to sit down fast enough.  Next thing I knew I was coming round on the floor, shoulder dislocated as arm stuck in my crutch, with a very nice young man at my side rushing for water…..hubby? Well having checked I was safe on the floor, he carried on paying for the shopping telling the bemused cashier “Oh, don’t worry she does this all the time”!!! Her face was a picture.
  14. This has to go to be shared by 2 physios, 20 odd years apart…..the first told me as a 21 year old student nurse that “You nurses are all the same. It is in your head”…..despite my footdrop, no reflexes, and double incontinence – corda equina syndrome!!! Following my second spinal fusion and discovering I had nerve root damage & thus permanent pain, my rehab physio decided she would be able to “cure” me.  During my second visit she told me that I needed to work harder to get some movement into my lower spine…..erm, I don’t think so!  There are enough screws and filler in there to hold up a kitchen cupboard – IT  ISN’T SUPPOSED TO MOVE, WOMAN!  We agreed to part company.
  15. I have been so lucky – but my pain specialist at St Thomas’s actually believed me and has made life bearable AND my cardiologist who also believed me and knew about EDS & POTS (I was so convinced my tilt table wouldn’t show anything)

I will save you from more wittering today and publish the second half later this week!

#FragileButUnbreakable #EhlersDanlosAwarenessMonth #ZebraStrong

SONY DSC
Not even doing the full bend here – don’t do this at home!

 

 

26 thoughts on “Ehlers Danlos Awareness Month Challenge! Spread the word and tell the world about EDS”

  3. A wealth of information to help us empathise with Chronic pain sufferers, and I am glad you have a great specialist who is looking after you I hear too much of doctors showing no empathy..

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  4. Awareness is everything when it comes to any form of debility. Pain, mental health, disability and so on are never really up there in public profiles. Most just potter about moaning about a cold or inconsequential gripe. All around them are other people with true problems that might at least make them think how fortunate they’ve really are.

    Bah, ramble away me. My worst angst is early onset osteoarthritis in a thumb joint. Not that much of an issue… I should perhaps add yet to that. I’ve known people with many things. Cancer, advanced depression, my mother with motor neurone, a good friend with no legs. Hardly anyone knows that mind. Which…goes back to awareness.

    I’m so impressed with you Claire. Chronic pain is a horrendous thing to live with. To see you blogging and outwardly motivated is exceptional.

    It’s not wittering either…it’s AWARENESS.

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    1. Every time you leave me a message, Gary, you leave me feeling inspired and very grateful to have you as a blogging pal! As you say awareness is everything and when I was working I was passionate about spreading the word on palliative care…still am. We had many patients with MND and people don’t know a great deal about it, assuming everyone can live like Stephen Hawkins!
      For us so much of this syndrome is our normal – my girl has been given help in her current exams with a laptop and extra time and she keeps saying she feels guilty – I have to remind her that her pain isn’t normal and to take the help on offer, without stopping “living”. At her age, or even 10 years ago when I was”disabled” off work, I never envisaged I would become a wheelchair user – but it has enabled me and this is what I need to focus on and project.
      Blogging has given me a new outlet – both in the chronic illness community with giving and receiving support, and in our wonderful BUYB family where we have such a range of lovely people to speak to!
      I really appreciate you all reading such a niche post!
      Are you coming to the bash?

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      1. I’m honoured to know people like you Claire. Too many just avoid people suffering. I doubt it’s deliberate and more to do with having no clue what to do or say. A friend of mine was in end stage terminal cancer a few years ago. His wife was angry so few of his “friends” visited. Most of them now regret it. To me it was very important to go. He was a mate so we just chatted rubbish and had a laugh.

        Your daughter should not feel guilty. It’s hard because as you say “normality” is not there. What she does have is an extraordinary mum. She needs to accept the help and that she may well need it. I always say there are primary sufferers and around them secondary ones that often go missed. Being brave and hurting inside. Wanting to make things better but not knowing how. Mental health can suffer unnoticed. Because of my mothers MND I also became friendly with a lady here whose father was suffering. You’re right too. Most palliative care homes I have seen are very unfamiliar with it. Tragic really in this day and age.

        Blogging is an outlet with many unthought of benefits. I did it as a writer trying to build a presence. That changed rapidly once I started getting to know bloggers better as people. I’ve suffered low mood for many years and finding similar people makes it less isolating. I’m amazed at the whole community bias too. So positive in today’s mad world.

        The bash… no. That’s part of my low mood issues at present. I set myself a target there. Publish and then consider going.

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    1. Thank you for reading!! It is still considered to be rare and many medics don’t know much about it. But awareness is spreading – when I was young we didn’t know and whilst it shouldn’t stop life, I might not have taken up rowing and nursing!! At least my kids have some understanding of their bodies and how they are a bit different!!

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      1. Despite all the developments of science and medicine, there are many things that are beyond our understanding. Even simple conditions like acne and psoriasis are beyond us.

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  9. Losing the Plot

    I am just at the start, having just been diagnosed with connective tissue disease. Looks like Sjogrens Syndrome but who knows. Waiting for appointments now

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    1. Maybe!! Although the full stretchy bit is for the palms to be flat together, thumbs inwards – didn’t do this as other EDSers would tell me off!! Seriously though, lots of people are hypermobile but don’t have any probs, or are just bendy in a few joints……don’t panic, you shouldn’t start dislocating!!

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