I hope you have had a lovely Christmas, as good as it can be anyhow! I had a good one, until I spoke to my daughter at her sisters party. She wants me to babysit her 2 young daughters, my granddaughters, one of whom is only just a year old, and wakes regularly still. It is on new years eve, until at least 2 in the morning.
I have tried to explain that I have to take my pramipexole, at about 8 pm, in order to stop the worst symptoms, and once I do, I literally do pass out with in about an hour and a half. My husband says I can be in the middle of a sentence, and I am gone, and he cannot wake me at all it is more as if I am unconscious. If I am lucky I can sometimes sleep for about 6 hours, but more normally around 4 hours. If I don't take them by 10 at the latest, I get the full blown RLS, and also the involuntary movements asleep. I am in terrible pain, it seems to make my back problems worse too, I end up just writhing on the floor.
She is now not talking to me, and I am desperately upset, and also a bit angry at her nasty attitude towards me. How on earth do we explain this horrible illness to people, when they don't take it seriously, or even think it is funny!
I am also under investigation for cardiac problems, and have been told that I probably have an autoimmune immune desease in the Crest spectrum of disorders. My ECG, is much worse, and I have been told to not get too stressed and rest frequently until they know what is going on with my heart. She has been told all this, but just does not accept it all as being a problem.
Sorry about the moaning, I hope you all have a great New year,