I have Charcot Marie Tooth disease, a neuromuscular disease that affects the motor and sensory nerves to my arms and legs, I think of it as having wonky wiring. I also have Ehlers Danlos Syndrome, a connective tissue disorder meaning in simple terms that the glue that holds my body together is too stretchy, like chewing gum. One is progressive the other multi-systemic meaning pain and fatigue are common features in both these conditions.
For generations pain is something that I have tried not to think about, to put to the back of my mind, to push through. I had always been a high achiever, setting myself goals and working hard through school, university then in the world of work, there wasn’t time to bother with the pain and the limitations it placed on me.
As the years rolled by my ability to keep up this fight began to slip away, I was having more periods of chronic fatigue wiping me out for months and pain that would consume me. It has not been uncommon for me to collapse, physically unable to put one foot in front of the other. My health had already robbed me of me career as a teacher. Gradually over the last ten years my life had become more and more difficult. I never made it out in the evening with friends and even taking the children to the park for half an hour was a huge effort, my life was slipping away.
I decided to fight back but in a different way, this was an active choice for me. It was only at this point that things started to change. Over the last couple of years, in a slow steady process I have made positive steps to cope and to live. Looking back I can now see what that it is a combination of lots of elements that have allowed me to change and maintain that change over time.
Acceptance – One of the hardest things for me has been acceptance, my pain is something that I would like to get rid of but I can’t, at times it has angered me, made me sad, I think that’s helped me on this journey. It is part and parcel of EDS and CMT and may get worse over time, I now accept this fact and deal with it. I view pain relief now as a form of control rather than it being a weakness. It is proven that mood and stress all have an impact on pain so in the process of acceptance and letting go things are actually becoming easier.
Negativity – I have learnt to let go of negativity. Some people won’t understand the pain that I live with or how it impacts everyday on my life. This used to bother me a lot, especially when a family member didn’t have a clue and did not want to take the time to learn but would be quick to judge, dis-believe or offer advice. Or when someone would give me ‘poor you’ sympathy when I know full well they really didn’t care. I can’t say that I am totally immune to their comments, I’m human after all but I am learning to let go and to focus on what is important, life is too short. I think it reflects far more on them as a person than me. It’s also given me more empathy towards others no matter what their situation may be.
Learning – I have also made friends with my illness, when I was first diagnosed I didn’t want anyone to know about it, I wanted to be normal, the same as everyone else. I went through a long grieving process. I grieved for the things I knew I would loose and where my illnesses would impact. This took time. Now I can talk to anyone about these conditions and enjoy sharing my experiences with others, EDS and CMT are part of me and that’s fine. I have learnt about my conditions in order to manage them, reading, networking and attending conferences have all enabled me to understand why I have my symptoms and the correct ways to manage them, it’s made a huge difference.
Exercise – I’ve got moving, I regularly attend pilates classes, I brought a dog so that I have to walk every day, I do resistance training most days even if it’s just 5 minutes. In the past I have driven to a pilates class (on more than one occasion I might add), parked up outside and sobbed. Part of me knew that I must push myself to go in, to get stronger, to get better but I didn’t have the energy to get out of the car and walk through the door, I would drive home defeated. There is a balance to be found between being doing too much and doing too little, both are counter productive, it is important to build strength at a steady pace so that you can maintain it. Slowly, the stronger that I have become, the less falls I have and the more confidence I have gained and I don’t visit that rock bottom place so much now. I feel proud of what I have achieved. When a trusted consultant reviewed my history and surgeries they were genuinely surprised at how mobile I was, that I should be pleased I was not using a wheelchair.
Coping – I have developed coping strategies without noticing. One of my friends commented how vague I am when making arrangements. She was envious at my laid back nature as she always liked to be super organised. Now she realises that I am deliberately vague as I can never predict how I can be feeling from one day to another and that way I don’t have to cancel plans if I can’t make it. I type instead of writing, we have installed a water heater so I don’t need to lift a kettle, I have two handled pans in the kitchen and I have a cleaner, lots of little interventions build up to make a big difference.
Pacing – Changing my mindset did not happen overnight. I rebelled. With a busy family I thought that the only way to function was to push, push, push but I realised that it made the crashes more severe. Feeding into the boom and bust cycle only serves to increase pain over time, once I understood this and could see the benefits that change could offer and it became easier to implement. Pacing my day to stop feeding into the pain is becoming my most effective way to manage long term.
Focus – I try to focus not on what pain takes from me but what it has given to me, the relationships that have been strengthened, confidence, positivity, my ability to not sweat the small stuff, empathy. I love to give back and have started writing about living with these often mis-understood and under diagnosed conditions, to raise awareness and make things a little different for my children as they grow and embark on their own journeys with varying degrees of symptoms from CMT and EDS. We try to give them the ability to laugh, to see the beauty in every day and always know that whatever life brings happiness is a choice.
This is an excellent article, like what you're doing on this blog.
I also have CMT (among other things) and was very involved in the community a while back. Drop by my site and say hi – http://susanwheelerhall.com or http://livingwellwhenunwell.com
Have a lovely day.
Thanks Susan, It all started 18 months ago, one post as part of EDS UK's share your story campaign…. then I got the bug… fast forward to now and I'm writing more and more, have an ebook coming out that I have co-authored with Kendra from EDS Wellness and I am even presenting in universities. It's funny how things work out. 🙂
It took a loooonnng time, like decades.
In the end I was accepted into Stanmore orthopeadic hospitals pain rehab programme. A three week inpatient course to manage pain long term, it focussed on loads of things, relaxation, Physio, stretching, psychology, OT etc. The biggest thing that I learnt on the course was to pace my life. What pacing does is give you back quality. Instead of my usual push, push push then the inevitable crash (which I always did) I learnt to spread out everything and actually achieve more now over time. This switch in mindset was the hardest thing for me as was accepting that by pushing even though I appeared to be 'normal' for a bit actually my body just couldn't keep it up. Check out these posts they might help –
This is also a great presentation on pacing by one of the OT's at RNOH Stanmore…
You can always email me and I can talk to you a bit more about it all. Sarah X
I was diagnosed with fibromyalgia. The push push push is my way of life. Your comment Hit me like a ton of rocks !! I AM slowly hurting myself . I do need to start with priorities . I still cannot accept tha "i cant" , how do you do it?
Thank for this. I fight fibromyalgia, irritable bowel syndrome, interstitial cystitis, depression, anxiety, and chronic fatigue. I've been diagnosed for years now and I'm still grieving the life I once lived. But, I'm learning to accept that my life is different now and I really am doing the best I know how.
Thank you, I'm glad you found it helpful. Acceptance has been the hardest thing for me but the best thing in terms of pain management. Doing our best is all that we can do. Good Luck 🙂