Well for us it has.. I am totally bed bound these days, and most of my day is spent trying to avoide the pain of the environment. Enviromental sensitivity is a massive problem for me, at the moment, noise, sound movement and light all effects my body and makes my body feel as if i have had a tonne of sugar, but at the same time i am exhausted and often dizzy, or even being sick, with my head in a bowl. This is how i spend most of my days. If i am lucky i may be able to post to my fb, wall, using my phone, and steve has set me an app up now so i can post to familytree house more easily.. It can also confuse me and frustrate me, as everything races around me, and its a sensory overload..
So why has today been so hectic? Well i finally fell asleep at gone half 6 this morning, having had massive sickness and body temp fluctuations in the night. My carer came and changed me this morning, and my prescription is still in the back of the pharmacy van, which has broken down.. This is essential medication! After over 12 months of asking, were finally getting medical waste bags, which means, our wheelie bin wont be full of my continence pads any more, yes i am double y incontinent due to ME . My gp took away with him a copy of ‘ voices from the shadows’ on tuesday, its an excellent video on the true impact of severe ME on human life. We got a phone call to say friends are coming to visit. I can normally only manage a short visit, and when people live so far away..its hard to ask them to visit. It really does me good when they come though, and asha loves the company.
Asha has had a tough two years, but she has coped very well, thanks to having a brilliant father, us having a few very good friends, and a home edd group who have constantly offered her support and a safe place to play. She is involved with the young carers now, and on saturday, is looking forwards to a trip to the zoo. On tuesday she starts her manderin lessons. And this friday is off to visit some friends with steve. She has played at home for a lot of the last two years, but she is happy, and although at times, weve considered school or flexi school for her, she has flatly refused such ideas.
She has recently been delving through beanos, and harry potter videos, like a child possed, luckily for us, a large second hand dealer, has kept up our trade relationship, and weve managed to get hold of old beanos at a reasonable price to satisfy her hunger! She also went through a massive myths buster obsession and was fascinated by the victorian era for a while.