Fabry Disease. this is one of my worst experiences of Fabry Disease.

Freezing cold and body all over shaking violently so bad all over 7th February, all night' felt so ill still shaking violently, I couldn't walk when I wanted to go to bathroom, it was like walking like a spastic..I dont like using that word. It started to ease off about 10am today 8th February this afternoon, I'm hot now and trying to cool down, burning pains in legs feet and hands. Its happened a few times over years that I can remember. 

I've had a headache all day, well for a few days really. Its Fabry Disease at its worst. Just took pain killers. I couldn't even think straight before or i would have taken them before, when i feel a bit better ill take my other meds and insulin. I'm staying on my bed all day today resting as I'm so unsteady. I'm using my walking frame as I'm too unsteady with walking stick and almost fell, all my muscles were shot to pieces from violent shaking. This is the worst I've been for a few years, last time it happened I was living at my house. I'm so glad I'm living in independent Living flat. I phoned my next door neighbour Jack he came in to see how he could help, this was about 11am today. I must say he was so skocked to see how i was at tge time. He offered to make me breakfast i couldnt eat anything, but he made me a cup of tea which was really nice and brought me water, all I wanted was fluids. Jack had to help me sit up and hold me up so I could drink my tea, Jack even had to help hold my cup so I could drink. He was worried about me. 

I didnt even feel like watching tv or doing anything like reading or crossword puzzle really my favourite pass times. I'm just going to rest for a few days until I feel much better. 

This one of the most terrible experiences I've had of Fabry Disease. That was an experience of COLD intolerance. I've yet to suffer the HOT intolerance when warmer weather starts. Out of both experiences I hate the freezing ice COLD worse it affects my whole body bones and muscles, the severity is unbelievable only to the Drs who know about the condition or those who have suffered with Fabry Disease. 

My fingers were so ridged I couldn't hold anything, I suppose like severe arthritis, like twisted cramped fingers. What scared me the most was my muscles not supporting me because the severe violent shaking had shot my muscles to pieces. when I tried to sit up and when I eventually got up to go to bathroom which took forever which was worrying as ya could imagine. That's happened before, but this last time was something else, an experience I'll never want to experience again. 

I've  prayed 🙏 to God so much this week

Sandra