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

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!