well I took the plunge and drove to an NRAS support group meeting last nite in Newcastle. So I got prepared, paced myself during the day and drove the hour there. I'm so glad I did, I met some lovely, lovely friendly people and my biggest surprise was how normal everyone looked! I know that is a strange thing to say but as I hobble still I expected lots is sticks, chairs etc and yes some of us had, but no it struck home very much to me about the hidden illness.
The speaker was a lovely lady professor who talked bout fatigue and I felt myself nodding at everything she said! Do you fall asleep during the day, do u fall asleep on a car journey, do u have restless mites, do u feel used up! Yes,yes,yes! So it was interesting especially when she talked about your memory for things being less is due to fatigue! I just though I was getting dementia, now I know it's the tiredness!
But today now as she described, I have used up a lot of me energy "pie ", that u can use all your energy pie in one day or borrow some "pie"from tomorrow, so i used that driving back, and I am really exhausted today but going for my assessment at the hospital, no rest for the wicked eh!!
Those I met, I won't name you in order I don't embarrass you, it was a privilege and u r so lovely and brave A xxxxxxx