Hi

I can fully relate, I am fully dependent for everything - I have to be fed, have drinks held for me, dressed, hoisted, taken to the toilet, you know the whole lot.... everything you can think of really... even scratching my face or turning the TV on. I constantly feel a burden and it's been really tough learning to deal with it...

I have a routine of everything that has to be done each day and I try and ask my mum/ boyfriend/ friends/ carers at each meal time if there is something I want them to do in the next couple of hours - like get me into bed and put my laptop on so I can do some work, or get me in my wheelchair so we can go to the shops etc. There are things called possum bags you can buy which carry a litre (or 2) of water which you wear on your back/ a chair which have a tube you can drink from - I used to have one on the back of my wheelchair when I could move my head and mouth. That might help.. have you had an occupational therapist assessment? that might help as well.

Another thing. It is NOT your fault you got this illness - and it's not fair.. but people love you and they might get irritated with having to help out but they love you and don't mind doing it - I know that I can get really upset when my sister gets cross because I need to go to the toilet or need something but I know deep down that she loves me and helps me because I need it .In return I try and do what I can - whether it's trying to remind people to put the rubbish out or just being emotional support to people when they are having a hard time - it just makes me feel like I'm giving something back.

I'm sorry you feel such a burden- but you aren't.. people love you and want to help you but I know what it feels like. My boyfriend says that though dating a girl whose a quad with RSD is exhausting it's more than made up for it by the good times...

Sorry, wish I could help more.. just wanted to say I understand..

all my love

Rosie xxxxxxxxxxx