newly diagnosed and Christmas

[JessAH]

Hi all,

after over a year of being in and out of hospital I have been finally diagnosed with ME (and FMS), after being told I was just depressed, it is refreshing to see the specialist write 'no depression'! I am currently suffering quite badly- a lot worse than last christmas, which only I felt nearly killed me-. I am now pretty much completely bed bound, if I am out of the house for more than 20 mins, I am covered in sweat, lose all colour from my face and get overwhelming dizziness and tiredness. I'm at a level at the moment where even fractionally overdoing it gives great pain in my chest, along side paralysis which can last from 10 minutes to several hours. During these times I can't move at all, can't open my eyes, can't speak, I can only get a minor grunt out to try and indicate what is going on.

I am currently really worried about christmas and how I will deal with it all. I live with my parents as I am unable to be alone, and everyone comes over every christmas. We are a big family and there are children involved. I just don't know how to deal with it all. Last christmas I suffered a lot during the festive season and I was in way better shape than I am now. Christmas is my favourite thing and hence this is even harder for me. I am just worried, especially with my paralysis spells.

Does anyone have any advice on how to deal with christmas and also how to deal with these momentary paralysis episodes?

Hope you are all well x

[nedd]

Just throwing a link your way.

healthrising.org/blog/2013/...

We just have to do the best we can and not beat ourselves up for just being us.

This too will pass

And it will soon be over I am working on the art of just letting the days take care of themselves, they always do and nighttime comes. With the feeling of another day done.

Go well

[klr31]

I would take care of yourself and be very careful how much you get involved this year. It's only a day and by being sensible this year you may have improved by next Christmas.

Karen