What’s all this about?

Firstly, I’d like to thank you for being here. Just the fact that you’ve taken time to visit my page means a lot to me.

You may be wondering what on earth this is all about, and the truth is I am asking myself the very same question! I’ve never done anything like this before, so why now?

Well, most of you may be well aware that I have an Hereditary condition called Charcot Marie Tooth Disease (CMT). This is a genetic fault that sits on the X chromosome and has been passed on to many members of my family, including my father.

My diagnosis came at the age of 18 following nerve conduction studies, as the blood test diagnosis wasn’t available at that time. This was a point in my life where I was able to wear heels, go ice skating, roller blading and many other things that I took for granted and have long since lost the ability to do. That’s because CMT is a progressive disease, causing muscle wastage of the hands, legs and feet due to over myelinated nerves.

As a young girl, I grew up witnessing the daily struggles my father had, not understanding the cause or the prognosis. But I distinctly remember him on crutches and in plaster on a couple of occasions. All I was aware of was that my Dad had quite major surgery to “fix”his feet and legs. But like the hero my Dad is, he kept a stiff upper lip and did his best to maintain his independence whilst in the recovery process. One memory that springs to mind was him working away at knocking through the old cupboard to extend the living room for our fast expanding family. His leg in plaster and crutches not too far from his side…. he was invincible. I wished he would stop, as the noise was unbearable over the film Jaws we trying to was watch at the time, yet I admired his sheer determination.

Here I am all these years later, pretty much the same age my dad was when he had his operations, with my own daily struggles and facing similar surgery that my role model had years before. I’m no stranger to surgery, I’ve had my share of it over the years. Surprisingly the surgery isn’t the problem for me, as a nurse I know what to expect in relation to pain relief, anaesthetics and the procedures leading up to and during surgery. Unlike any other surgery I’ve ever had in the past, this one is going to be most challenging for me as I feel I will be loosing my independence, and having to accept that I will need assistance for many weeks after this operation. This is what keeps me awake at night. This is the source of my anxiety and panic attacks. This is that big knot of worry that cramps away in my stomach at the very thought of not being able to do very much for a while.

So far I’ve managed to put surgery off for many years, always finding an excuse…

“My children are to young and need me”

“I’m focusing on getting through university”

“I want to get some nursing experience first”

Well guess what? I’ve kinda run out of excuses now. I have to face the fact that I need this surgery, so that in the long run I can maintain my mobility and thus my independence for many more years to come. With out it my feet become weaker, joints become more unstable and my feet will continue to deform. I will fall more often than I do already, putting the career I’ve worked so long and hard for at risk.

That’s where this page comes in… I thought it would be helpful for me to document my journey through the surgery and out the other end. I want to record my thoughts, fears, feelings and emotions. I’m hoping that it will help me make sense of all this, keep me focused on my recovery and in some way help anyone else that has the same condition and facing similar surgery.

So please stay tuned, I will be updating at regular intervals. I will explain in my next post what surgery I will be having and talk you through my experience of today’s preoperative assessment. You can also follow this page through Facebook. Thank you for taking time to go along this journey with me.

8 thoughts on “What’s all this about?

  1. Hi donna you wont be on your own you have alot of very good family and friends that will be there for you i will be definitely be coming round to help you a cup of tea or coffee run the vacuum round whatever you want

    Liked by 1 person

  2. Hey Donna, I think this is a great idea! You’re not alone in this type of thing, and it truly is difficult learning to rely on people. But you can and will. Think on how much you love to take care of people and allow them to do that same thing for you. It won’t change your independence at all, just your ability to let others help you. You’re strong and can do that! Big hugs and I’m looking forward to reading your next installment.

    Liked by 1 person

  3. Donna x you were a great source of comfort during my stay in hospital as you knew my anxieties. I cant physically help you as I’m post op myself but you know im always here for a chat or to listen. Love you lots x


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