Of all the times to meet someone I'd not seen for years! Mid-way through a hot flush and totally deaf in one ear, due to too much ’unplugged‘ swimming. Trying my hardest to look completely calm, I said “Hi, how are you?”. Melting inside, at an extremely high heat, and staring hard at her mouth in order to lip read as much as possible. “I must look a state” I said, “No“, she replied “You look great”. I'm not convinced, but, awkward chat over, and the cashier asks me if I need a hand with my shopping? Do I really look as if I need help? I think to myself. Do I look that vulnerable and weak lately? Over sensitive probably, they were just being helpful, surely? But, lately, various people, including a lot of the shop assistants were being very helpful. Recently, in our local, I'd had my basket whisked off me and put at the till. I'd even had someone carry my shopping o the car. Of course they may have spotted me from the CCTV, leaning heavily on the bread shelf, a very risky strategy. More than just polite I think, it's happening more and more. I know I’m struggling, I just hadn’t realised that it showed.
Is it normal? to find myself gazing whistfully at a mobility scooter, or admiring the design of wheelchair. Rewinding a Channel 4 programme, just to admire the presenter who is using a wheelchair. Is it safe to say it outloud? Would I be tempting fate if I said... that sometimes I feel like a life without walking wouldn't be quite so bad? I feel sick at the thought of telling anyone, and so, I start tapping away at the keypad.
CMT is a neurological condition, which is hereditary. The most commonly inherited condition, being 50% likely to appear, although the condition itself is relatively rare. In my case I appear to be the start of the trend. However, I have had suspicions about a couple of members of the family who appear a little more than clumsy.
In our lovely little family's case, both of our gorgeous children have inherited the condition, from me, and this in itself has had a profound affect on their lives so far, and has led to testing times, in our marriage of 24 years.
If anyone reads this, finds it familiar, makes you laugh (or maybe even cry a little), then that will be helpful to me and my extraordinary little family too.
I'm off for now, having had a nice bath. Listening to our teenage son chatting to his friends online, while our daughter is out, working a shift at the local chinese takeaway. A pretty much, normal Sunday evening. Hubby has put the kettle on, and has asked why I'm typing in the dark!
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