I have lived with my illness for 21 years. My parents were fighting for two years previous to my diagnosis, that there was something wrong with me. I was constantly falling over, and struggling with stairs was an obvious problem.
My parents were both told by a number of different doctors that they were being over protective and that things would work out in the end, two years later, this was still going on, me now aged 5 years old. My mums friend was a GP and although she was not my GP she came to see me at my house to watch me walk up the stairs, before I got onto the third stair she stopped me and told my parents she knew right away what it was.
I’m not sure how about I came to go and see a specialist, how I was referred etc, but I was then seeing a doctor in Alder Hey Hospital Liverpool. from then on its been ‘normal’.
All my life I have known I was ‘disabled’ but as a child I didn’t know the full extent of the illness, I just knew I had ‘sore legs’. My parents never really explained what my illness was, I just got told I had muscular dystrophy, until I was old enough to go to the doctors on my own, I then learnt it was MTM.
I am not sure what form of MTM I have, as I have never felt the need to find out. I know what I can and cannot do, I know if it will / won’t get any worse so as long as I know it is MTM then I feel that is all I need to know. I couldn’t bare reading about how long I would live etc, rather just live my life the way I am (if you can understand that).
I am currently working at Lime Pictures Nursery. I work in the tweenie room, which is full of 18 months to 2 1/2 year olds. On a day to day basis I am generally okay but my muscles get tired and just cannot function properly. It kills me that in my job, I cannot get on the floor with the children to play, I have to sit on a computer but my work is my life it gives me my independence.
I struggle with some of the most simplest of tasks, that ‘normal’ people take for granted. I do not have the strength in my upper arms to lift heavy objects off the floor or from up above. In my job I do not pick any of the children up, I sit with them either on my knee or beside me. This is not for my protection, this is so I don’t harm the child. I cannot get up off low seats or the floor but I find this is a common struggle for CNM / MTM sufferers.
Although I have lived with this illness for a long time, I try to take things in my stride, but one thing that bugs me is when people stare. I have been told from different people that to look at me you wouldn’t believe I had a disability but the amount of people that stare or grunt at you when walking up stairs behind you is unbelievable. It really makes me 1. want to scream at them for being so ignorant and 2. it makes me want to cry (one I have done many a time).
I struggle walking long distances, I quite enjoy walking too. I do go to the Lake District every year, and manage what I can. I don’t fall over as much as I used to but I think when I’m tired and my muscles are feeling weak, that’s when it happens.
I have an amazing family support, they all know my boundaries of what I can and cannot do. My partner of nearly 7 years is my absolute rock. Neil supports me in more ways than he needs too. He is always there if I have a fall, ready to swoop me up before I have hit the ground, and always there to put a smile back on my face when I’m having a low day.
I am living each day as it comes and I try to tackle everything life throws at me. I think having MTM has made me a stronger person inside, and I am hoping to help Toni raise awareness everywhere!!!