Angry, angry and even more angry and I also feel guilty

I feel guilty because I feel so angry. There is so much suffering in this world, there are people very close to me who are going through hell so in that respect my anger is totally unjustified.

Let me explain or rather let me look on the positive side. Hopefully things are going well for us at the moment. I'm having a new home, one I can cope with and the lads are going to have their own homes too. Now how often does that happen? Not often I'll tell you.

Dan is working after six months of not working so that is positive. Physically I'm feeling well, so on the whole life is looking good.

But I'm sorry I'm still so angry and it's no ones fault - it's my body, my disease.

CHARCOT-MARIE TOOTH DISEASE - I FUCKING HATE YOU!

Every time I think I've got your measure, every time I feel positive about living with you, you throw up another surprise. We walk hand in hand through life but round every corner you jump out and bite me, throw me back and then expect me to take your hand again. But I have no choice, you are my constant companion.

You know I try and hide the affects you've taken on my body. I hide my legs so no one can see how you've taken away the muscles. I use trolleys to shop and to walk to no one can see how you've affected my ability to move but now you've taken my hearing. Okay I'll soon be able to hide that but what next?

Tomorrow I'm going to be plugged into the national grid, well not quite but that's how it feels. Tomorrow at 12.30 I'm being fitted with two hearing aids. Okay to some, that doesn't sound drastic, to me it's devastating it is yet again, a constant reminder of another part of me I'm losing. To me it's almost the very core my being. Sounds, music, bird songs will have to be and will be stored in my head as my hearing gets worse.

But tomorrow - I'm going to dye my hair red, dark bordeaux it's called. Why? In defiance of Charcot-Marie-Tooth - you who I hate so much.