EDS-HT

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I have Ehlers Danlos Syndrome –  Hypermobility Type. This is a genetic condition which affects the collagen, mainly in that it makes it weaker. This has a whole host of ramifications including fatigue, pain, dislocations, poor healing, prone to injury etc. I have made an excellent recovery from my initial flare up and I am now able to manage my condition exceptionally well. Not least of which is getting and using a wheelchair.

History

I knew I was hypermobile at a young age, I was in a pushchair due to dislocating hips a lot when I was a child, to the extent that I broke it due to being too heavy. I went to see Professor Rodney Grahame at UCLH in my 20s when he told me that I definitely had joint hyper mobility syndrome (AKA EDS-HT), but at the time there wasn’t any real symptoms, so he told me to come back if things changed for me.

For about six months in the last half of 2014 I was extremely affected by it, I was essentially just working and then crashing out in bed or on the sofa. I had to take a month of sick from work (at the time as well as freelancing I was working 3 days a week for the Royal Opera House Bridge). At the end of this I was feeling a lot better again, so I made the extremely hard decision to stop working for ROH and go back to freelancing.

The downward spiral happened very quickly for me. In May 2013 I hurt my neck for no reason that I could tell, but it was aggravated by running and swimming – I was training for a April 2013 marathon, having done a half marathon the previous October. I was training for triathlons, swimming and cycling a great deal. In January 2012 we bought a Springer Spaniel, Buster, to be my running partner when he was old enough. Springers are renowned for having a huge amount of energy and needing a lot of exercise.

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In November 2012, I got salmonella (but only got the diagnosis about 2 months later), while I was working for Shakespeare Schools Festival and I was also running Totally Tilbury. So I was running two festivals, training for races and essentially not really eating for about a month. Yes, I know….

After this I wasn’t quite right, I was always fatigued and tired, I kept working as much as I did and kept training for races, but this was through sheer will and stubbornness. I kept saying to my drs that I wasn’t right, that I didn’t have the energy that I used to have, but he said that if I doing doing that much exercise that I was fine. I tried to explain I kept going through willpower but he didn’t believe me and told me to take a multivitamin.

I kept going back, repeatedly and had various test but nothing came out….

Then my husband and I went on holiday together and I fell asleep on the sofa, unfortunately in my sleep I put my foot up on the sofa arm and as I was napping my knee was hyper-extended backwards and kept on stretching the wrong way. This hurt a lot when I woke up and I struggled to walk after this, but just thought it would shake out eventually. Then when I was training for my marathon I fell quite badly and landed heavily on the tarmac on my knees

They just didn’t heal, it hurt to walk and I started to use a walking stick all the time. I asked my drs to be referred back to the Hypermobility Clinic at UCLH.

Recovery

From there I went to see hydrotherapy and the COPE Pain management clinic.

Although I utterly resented the pain management clinic (especially as fatigue was 2015-01-30 14.20.05my biggest issue), I have slowly over time put it into play in my life and the difference is astonishing. I am now able to walk 5K on soft ground, whereas six months ago I could barely shuffle 10 meters, due to pain, fatigue and my legs just giving way.

I am truly grateful for that course and for the rehab that I got from the local physiotherapy team, they both made a massive difference.

I have made radical, radical changes to my life, including using a wheelchair as I need to, but now I feel like I have a life again, not just working, sleeping and being in an exhausted fug of misery.

Now

I am lucky to have made such a recovery, but this will not be the case for everyone. Sometimes I use my wheelchair, sometimes a stick and sometimes I can walk around normally. If I am out for more than an hour I use my wheelchair.  I struggle to stand for any period at all. I am now back working again as much as I want to and am able to live a really good life.

You can find all of my posts about EDS, but below are a selection of them.

I offer mentoring if you would like to hear more about how I have balanced my life so that it doesn’t effect me quite so badly as it did.

Highly recommended book:

A guide to living with Ehlers-Danlos Syndrome (hypermobility type). 

 

Recommended posts:

Running workshops in a wheelchair

Rolling up to represent

Music for health

Rehab

Swimming

EDS Awareness month

Being a part-time wheelchair user

3 major changes

The fight for a wheelchair

A change of focus