I have decided to create this website about Fighting My Losing Battle against Motor Neurone Disease (MND) which is a progressive TERMINAL illness that affects around 2 in 100,000 people and will KILL most within 2-5 years. My intension with this site is to try and do my little bit to raise awareness and also log how my battle goes, ups and downs. I will post regular updates as much as i can.
Sunday, 5 May 2013
Dreams
Ever since i started on the glyco ive been having very strange dream's, really vivid, load's are like i am on the edge of something trying not to fall. Some are so real because there about where i am and the people around me, i wake up numerous time's but the minute i shut my eye's they carry on, the friggin good ones don't lol. The one that stands out most was the other afternoon when having a nap, i was half asleep and i felt a hand lightly cup the back of my head, at first i thought my mum or rachael was there or even a carer but nobody was there, i shut my eyes for what seemed like a minute and the hand came back but again nobody there , shut my eye's again and the hand came back but this time I just left it and then it was like i was being lifted out of my body, my stomach sank and i woke up in a panic, i got after that, all that went through my my mind was is that what will happen when i die? Was that a warm up? Who knows but it scared the shit out of me .
Wednesday, 1 May 2013
A bit of an idea
Well a lot has happened in recent months, from the hospice stay, pneumonia, chest infection, meds changing and obviously me falling to bits. I am now on a permanant syringe driver with glyco peronium (spelling) to control saliva, now once i started on it they give me the full does which knocked me off my feet, i felt so ill for about 3 days, i really thought i was gonna die! i couldnt do anything, it was horrendous and thank god its becoming more controlled now.
life has become pretty shit to be honest, I could sit here telling you it can be worse and list a positive or two but reality is its hell, I know i am awful to be around at time's but I can't help it, ive been through the mill of late, from the illness to finding out a support worker who I thought cared had made crude comments about me to other staff and rather mean ones on twitter which hurt . We had a few problems with the care agency but seem to be getting better now things seem to be getting better.
Got yet another chest infection, its getting to me in a big way now, the cushion on my wheelchair has been a nightmare and my bum cheeks are very sore, got a new one come today which feels great upto now. I seem to be in a lot of pain lately which adds to everything. I know im a moaning bastard and people have more worry about like getting their next boyfriend/girlfriend or getting out but i don't give a shit.
Rock bottom.
Got yet another chest infection, its getting to me in a big way now, the cushion on my wheelchair has been a nightmare and my bum cheeks are very sore, got a new one come today which feels great upto now. I seem to be in a lot of pain lately which adds to everything. I know im a moaning bastard and people have more worry about like getting their next boyfriend/girlfriend or getting out but i don't give a shit.
Rock bottom.
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