The road to acceptance has been a bumpy one.
When I was first diagnosed with CMT I grieved for a long time. My life at this time was in a state of flux. The young successful adult that I had fought to become was no more. I had a new baby, who I loved with all my heart, but no job, my career was stolen by my dwindling mobility, I was struggling the most that I ever had in my life. I had two surgeries in quick succession and more planned over the next year. I was coming to terms with the fact that I had an incurable neuromuscular disease that is progressive with a 50% chance of passing it on to my child.
It took two years, that and the third surgery to be successful for me to finally begin to come to terms with the diagnosis. Don’t get me wrong I wasn’t moping around crying for two whole years but to understand and accept what this meant long term for me and my family really did take that long. I was sad, angry, helpless, anxious but slowly, I began to find peace.
This was my first step along the road. In the years that followed many facets of my illness remained unexplained. Ten years followed that first diagnosis with many, many hospital admissions, outpatients appointments, dislocations and unexplained fatigue. In addition to my own growing list of unexplained symptoms I have collected three amazingly bendy children, one that makes physiotherapists gasp, all with their own varying degrees of pain and fatigue. All this information was pivotal when I ended up in Professor Grahame’s consultation room, the pieces of my life slotted neatly into place when he gave me my EDS diagnosis. This time the process of acceptance was different. I was elated that I had the answers, EDS might be a multi-systemic condition that is not going away but at least now people know that it is real.
I love life and I want to live it.
By far the hardest thing for me is accepting this for my children. All my children are bendy and have varying degrees of symptoms relating to hypermobility and my littlest has a confirmed diagnosis of CMT. I don’t know if I will ever come to terms with the fact that they all have pain. In six months between them they have attended nearly 40 hospital/ physiotherapy/ occupational therapy appointments. I will never get used to watching them struggle where there peers don’t. To be tired, tired, tired all the time. To have to do daily physiotherapy to lead anywhere near a normal life. Then there is my daughters wheelchair referral for high pain days and long walks, I will push her proudly, she’s mine and I love the bones of her but inside I know that my heart will be breaking.
I accept that this is all needed for my children in order to manage their conditions and I’m fully on board on this journey with them, to navigate when the road gets bumpy, to pick them up out of the ditches, to adjust their sails when they need a little re-direction and to celebrate when they reach the top of the highest hills. It doesn’t mean that I will find it easy but I am slowly learning to trust the journey that I am on.
