This is me… Till Death Do Us Part

This was a post I made last year for awareness month as part of EDS UK’s share your story campaign.  Its a little dated in terms of how I am medically, this morning my ankle joint has collapsed, my hip is impinged and I am weighing up weather foot and ankle or knee surgery should come first but in essence… this is me…

Living with EDS is like being in a rocky marriage. You have to work at it, learn to accept it for what it is and learn to handle it. Not always easy especially when it’s just one person doing the work.

I’m Sarah, aged 37. I was diagnosed with Ehlers-Danlos Syndrome last May, but as the pieces of my life slot into place I realise that I have had symptoms since childhood. My early years were littered with falls and hospital admissions, for unexplained hip pain that stopped me from walking. My teens were the years where my dislocations plagued me. I also had weird illnesses related to my blood sugar, fainting episodes, dizziness, bowel problems, flushing and migraines.With no real answers from the medical world I plodded on and learned to live with things. I studied hard and graduated from university with 1st class honours and started working full time as a teacher; I moved out of home and got married. Things were good with my life, I was successful with my career and happy personally but I still struggled, one thing after another would knock me off my feet. During these working years the niggly problems remained but the pain and the fatigue became relentless. I often came home form work, slept for two or three hours, got up had dinner with my husband and was tucked up back in bed by 10pm.

After the birth of my first son things really went downhill rapidly, I had nerve pain that made it unbearable to stand, my knees became so painful walking small distances was impossible. If I walked on any uneven surface, like grass, I would dislocate. Even the bed covers brushing against me would cause a dislocation. Then I moved in the bath one night and a piece of bone sheared off from my knee cap. I had surgeries to fix the nerve pain and was eventually diagnosed with Charcot Marie Tooth disease, a form of Muscular Dystrophy. Was this finally the answer to my weird and varied medical history?

At first I thought so, it answered many questions, but not all. However it was at this point that I began to learn to take control of the rocky relationship I had with my chronic illness. I gave up my teaching career, which was hard but ultimately the right decision. I worked hard to become physically stronger. I found a fantastic pilates teacher. I fought for the right medical care. I had a positive knee re-alignment surgery. There were times when I didn’t win the fights, where I would be wiped out with fatigue for 6 months at a time, where I was having three or four migraine attacks in a week, where the nerve pain took my breath away so much I could not read to my little boy. However, I understood a little more what I needed to do to tip the scales back in my favour and went on to have two more children throughout my 30’s, each pregnancy being a little easier than the one before.

As my little girl grew and started to try to walk there were obvious problems. She never bounced on my knee, her feet looked like they were on backwards and as time went on she walked over on the insides of her feet. She also fell a lot and tired very easily. Although all the doctors we saw reassured us she was within normal limits, we pushed and she had a diagnosis of CMT and gross hypermobility just before her second birthday. At the same time my oldest son had a negative CMT test and all of his symptoms were assigned to hypermobility.

The dots were finally connected for me over the next 12 months with a combination of input from my pilates teacher, my foot surgeon and lots of internet research. A consultation with the wonderful Professor Grahame confirmed EDS as well as spectrum of autonomic problems. For my children we have been told time will tell, they are all hypermobile.

One of hardest things for me is learning to be the best advocate for my children, with school, with the medical profession with friends and family. All three of them are bendy. Rubie’s CMT diagnosis definitely throws her a curve ball but most of her struggles come from her gross hypermobility, she bruises easily and is often in pain. My son battles daily with pain and fatigue. I will teach them to be strong and have a positive relationship with this.

The other thing I struggle with is its cloak of invisibility. While I am a master at painting on my smile and getting on with life I know that many family members judge me negatively because I look OK. They think that it is not real when my ribs or shoulder blades pop out when I cough nor can they comprehend that putting my knee cap back into place after a dislocation comes as easy to me as brushing my teeth. Many of them never ever ask how I am even if I have been unwell. Every day I have to cope with things that would have other people rushing to the hospital, I have to accept a level of normal incomprehensible to most. Most importantly I have to learn to accept perhaps that these people will never understand, it saddens me. Only those that truly love me can look into my eyes and immediately see the pain behind my painted smile.

As I approach my 38th birthday, I feel blessed that I have my amazing husband by my side during this journey, and a mum that gets everything without words because she lives it every day too. I have three amazing, funny, bendy children that light my world. I am looking forward to rehabilitation later this year at Stanmore and testing at the National Hospital for Neurology and Neuroscience. I am finally being looked after!

Each chapter of my life gives different problems to face, right now I am having regular subluxations of my shoulder blades and ribs and I have started popping bones in my feet and back, all new ones to me. I have dislocated my knee again for the first time in 7 years. The arthritic pain in my knees, feet, hips and hands can be debilitating at worst and painful at best. I can also tell where I am in my menstrual cycle by how loose I am, how much pain I have and how bruised I feel. I often feel dizzy just walking my dog around the block and on some days I can feel that my head is just too heavy to hold up. And the fatigue…. It is still relentless, but I have finally gained the answer!!!

I can not divorce you EDS, a trial separation would be nice sometimes. So I will learn to live with you and make it work no matter what you throw at me. I will wear the trousers!!

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Written by Sarah Wells