Hello there , I am new…. from sheffield uk

Hi there my name is Charlene Denton and I am a 28 yr old differently able mum and wife. I have 3 kids two boys and a girl, and been married 5 year and together for 13 and a half year and live in Sheffield.

I have Charcot Marie tooth type 1A, this is not considered a serious form.But the muscle waist and nerve damage leave other health problems and I have found not one person in the same family suffer the same.

I have scoliosis of the spine, because my muscle is wasting around my spine it is curving. I have had a branch block for the pain it causes me which helped enough for me to able to live a better life style.
I also have restricted breathing , and use a wheelchair to go out in as I am unable to weight bare for long periods of time.

I suffer nerve pain, cramps, muscle pain, fatigue, hand tremor, foot drop and more.
The cmt comes from my dad’s side of the family, unfortunately my dad never played a active role in my life or pay child maintenance but left me with the cmt.

My mum found it hard to cope with the effect the cmt had on me, and when I finally needed the use of a wheelchair. And she had only visited me twice in 5 month of me being in neuro rehab. I asked why and she told me she couldn’t deal with it, and then when my son was tested and there was concerns he had it. She was kind enough to tell me what a bad person I was for having kids because I have charcot Marie tooth. And wished that if my son had the cmt then she hope my cmt made me suffer just as bad.

So I also had to endure a breakdown of relationship with my mother, and sister. As my sister took joy in terrorizing me for weeks with sick threats of

” best you remember your legs don’t, work can’t run when I comes smash your face in.” She has mental health problems granted. But I raised her and cared for her instead of making most of time with my family and that hurt.
All because I stopped my family having contact with me and my children, I also have post traumatic stress disorder caused by years of mental and physical abuse.

I was diagnosed with cmt after I had my son, I noticed strange things happening. I would fall over a lot my grip on jars got weaker and I would become fatigued easy.
I thought I had come to terms with the diagnosis, but chucking the letter of confirmation in the bin. And then pushing it to the back of my mind untill I felt I needed to worry was not coming to terms with it.

I realized this when I had to use the wheelchair and am quiet dependent on it, coming to terms with it was hard.
I didn’t know who I was anymore, and combined with the depression I gave in.
I eventually did come to terms with it, I had to I had the kids to live for regardless of how hard it had been.

At first I saw cmt as the enemy, and thought my life was over (as dramatic as it sounds).
I didn’t realize that actually it wasn’t my enemy but part of me, I noticed that in hating the cmt I hated myself.
And despite all I have been through I do more now then ever, now I am living life.

I started travelling abroad twice a year, and I horse ride every other week to help maintain what strength I have and my balance. I am so glad I have my kids because if it was not for them I would of given up by now, and probably be lost.
I also am more appreciative of things and people in my life and don’t take anything or one for granted.

I would love to meet people in south Yorkshire/ Sheffield that has the same or similar problems.
As I don’t have anyone to relate to here , and at times that can be frustrating.

Thanks for stopping by to read Charlene x