Well, I knew I was having quite a good run lately. But CMT is the cause of my insomnia tonight. I’m in so much pain!! I’m not talking about pain due to my operation, this is different. This pain I live with day in day out on a much lower level that I can usually cope with. But tonight it’s off the scale!
The only way I can describe this is by likening it to tooth ache, very very severe toothache that has taken over both of my legs and also my hands and arms. It feels like my legs are made of concrete, and when I walk it’s like walking through thick deep mud. I know it’s bad, because it’s woken me from quite a deep sleep. My hands feel heavy, clumsy almost. There is nothing and nowhere I can put my limbs that will make this any better.
Pain killers have never helped in this situation to free me from this awful and debilitating pain. Yet I have still taken them, hoping that by some miracle they might actually work this time! Imagine this pain as a gigantic iceberg with a big pointed top. All the pain relief ever does is round off the tip, taking away only the slightest bit of sharpness. I wish I had a hot tub right now as they help loads. Maybe even a hot bath, but in this plaster cast I just wouldn’t be able to get in or out safely. The best I can hope for is sleep to take me away from it for a while. But even that’s not going to happen now.
How long this will last is anyone’s guess. Sometimes it can be over in a matter of hours. Yet other times it goes on for several weeks until it subsides to a more manageable level.
I’m sharing this with you now, ( during CMT awareness month) as many of you don’t realise this struggle. It’s locked behind our closed doors and only my family get to witness what this horrible condition puts me through.
I’m going to go now and try hard to sleep. Goodnight all, thank you for taking time to read this xxx