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STORY TIME : My interoception sense of pain and past issues

Jane Green MA Ed.

What happened?

July 1st 2019, I went for a little walk.

My left foot sunk into a soft dip in the grass verge which incredibly quickly upset my weak left ankle.

It gave way to the outside left, then slammed me hard on the ground on the opposite right hand side onto my other leg.

Accidents happen in slow motion - yet also scarily, quickly.

I knew I was hurt but didn’t know how badly.

A lovely older couple passing tried to help by telling me to "kneel first then get up slowly."

I told them I found kneeling tricky.

I did get up, and used my walking poles to balance as I could not put my left foot to the ground, so I realised it was probably sprained.

I had to hobble home very painfully and slowly. It was excruciatingly painful

Once home, I used ice and compression on my left ankle.

I felt uncomfortable for sure, and felt unstable elsewhere but was not sure why.

I had a Board meeting that night, and did actually attend it, but couldn’t drive or concentrate well - so was perhaps not the best decision.

After a difficult night, I realised I wasn’t sleeping due to painkillers not working and my breathing was shallow.

I rang a friend who suggested I do go to hospital.

My instant reaction had been not to go, as so often I am not believed to be ill/injured due to hEDS.

But, she took me and I waited some 7 hours before being seen.

They x-rayed my left ankle, and I told them that my right knee was also very sore, so could they please take an x-ray of that too?

They questioned me on this, as to why, and how much pain I was in. So I lied, and said "a lot" and in end they agreed.

Finally, I was told my x-rays were 'all clear' and I was given diagnosis of Grade 2 rupture of left ankle, sprain Grade 1 right ankle, bruising right knee, right hip and probably also shock.

I was told not to weight bare on my left ankle.

So I didn’t, and took all my weight on my right leg.

I was given a large, rigid boot on my left ankle, and stretch support for my right ankle.

Luckily, my hands & wrists had just bent over and not broken.

Yay for flexibility here!

I saw a physio immediately from our specialist circle of physios in SEDSconnective who understand symptomatic hypermobility, to help recovery with my ankle as I knew waiting was not in my best interests.

I continued non-weightbearing on my left ankle, but my right leg felt ‘strange'.

I wasn’t sure how, but as I had been told it was clear, so I carried on.

I found it incredibly difficult to find care for myself in an urgent situation.

My eldest tried hard, and friends helped.


Seven days after my accident (on a Sunday) I received several urgent phone messages asking me to call urgent care immediately.

When I did call, I was told to come in immediately.

They had reviewed the x-rays of my knee, and thought it was actually fractured.

I replied "...but I was told the x-ray was clear. And anyway a fracture can’t be serious as I’ve been walking on it"

But by then they were by then nearly shouting at me, and said "Don’t walk on it!" and to "Come in straight away as it is one of the most serious breaks you can do to a leg!"

Well, that certainly galvanised me!

A friend took me back to urgent care, via a wheelchair this time.

I was taken to the plaster room when they started preparations to plaster my right leg from hip to ankle.

I had no warning of this.

They told me I was not to weight bear in any way on my right leg, and just to use my left leg -which seemed to be to be rather a late warning.

I asked (luckily a friend was there to support me) how I was supposed to manage, as I had a rigid boot to protect my left ankle rupture?

The medical staff suddenly looked at me as a whole person, and saw my left ankle hanging off the bed...."oops!"

So in the end, the plaster cast was avoided, and I was given a cricket bat splint for weeks.

They are not the easiest thing to wear with other splints, and I was not given any instructions on whether to use at night as well as day?!

Using crutches with dodgy shoulders was also causing me more issues.

Some weeks later, a consultant diagnosed me with a Fractured Tibial Plateau Bone - one of the most serious fractures you can do to a knee, and that can lead to serious complications.

I was very lucky that my walking on the leg in-between had not severely comprised it.

I did not need surgery, but still needed a support splint on the knee and ankle splints on both legs - eventually using an AFO on my left ankle.

I had issues with my tibial plateau for the next year, and I still get some issues now in the winter on my (already dodgy) knee due to other diagnoses.

During my recovery, my eldest managed to cook me the same meal - a frozen corn burger -for 4 days, as using my legs was almost impossible.

On the 4th day, I asked them (rather desperately) if they could cook me some vegetables.

I was so hungry and needed fibre!

I told them I knew there was broccoli and carrots in the fridge, which they could steam, as I had taught them this before.

I duly received what I asked for, and my eldest did wonder why I couldn’t help laughing!


I am glad I had the courage to go back to the AE after so many past issues.

Glad that I listened to my gut saying I needed an x-ray for my right knee.

I do not bruise easily, so takes days before any bruises show up.

I think my interoception sense of pain is really way off, compounded by my past issues and cognitive understanding, but I do now use my instinct which I have always been trained not to use from a child/adult even by practitioners, as told I was a hypochondriac, to better inform myself of decisions now.

The hospital apologised for the x-ray blunder, and I understand that these things can happen in cases that are no clear, so that is fine - I think.

I am glad that SEDSconnective is there when it can be, to help others who need that expertise after accidents like this.

I was never offered any Musculoskeletal support for this, but knowing how it had not worked in the past for my joints is something to work on, to make sure our issues are listened to, and understood.

Before my hypermobility Ehlers-Danlos diagnosis, I had been given the 'bendy lady' label and fibromyalgia, which resulted in being sent to a pain clinic for an actual real/acute injury, or to come back when in "not so much pain" when I had two shoulders out of order, one dislocated in recovery and one rotator cuff tear injury both in slings.

I did ask them when they thought that would be?

I truly believe the best way of improving outcomes and transformation change for hypermobile EDS cohorts, if not able to do coproduction is to actively listen from actual grassroots groups such as ourselves.

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