This thing does destroy everything it touches. In general I try and stay positive about it and think of the things it's given me - but today I am miserable and fed up of always being in pain and fed up with trying to be a "normal" student at uni - when I am obviously not. I just wish people would understand abit more - I know they can't, no one, not even other RSDers can fully comprehend what each individual is living with, and even when we say "I understand" we do... but only to a degree. I'm fed up with friends that go "but you're in a wheelchair, why can't you go out?" "because the wind hurts, the air hurts, everything hurts so much I can't bear to sit or lie or do anything but think of pain".. and when you're out the "happy face" has to come on so they never see the pain or the tears or the fear.

Thats where family come in. My mum has had to live with me getting worse and worse as time has gone by, going from mother and friend, with her daughter at boarding school, to visiting her in a hospital an hour away every day for 6 months, to having her back home and gradually taking on more and more care stuff till she has to do everything from dress me, transfer me and feed me. Mum's been there when the pains been so bad that I fit, cleaned me up when the meds have made me throw up everywhere,liquidised all my food so I could swallow it (and threatened to place an NG if I couldnt keep enough food down), try to find something that will take the pain away or reduce it enough for me to stop screaming in pain. In the last 4 years she has aged - carrying a twelve stone girl up and down the stairs does that to you I suppose. Then, as I've grown older and more able to manage my condition on my own - learning to hide the pain, to keep the screams inside she has had to learn to let go, to trust that my friends can look after me appropriatly, that I have to learn my own lessons in pacing and how much I can manage every day and that if I choose to do too much and ignore the pain warnings then I will end up in flare up. As a mother and a carer when do you step back? especially when you know the person is deterioating. Is it better to give them the freedom to make mistakes - and know they will suffer for days afterwards or is it better to keep them wrapped up in cotton wool and keep them safe from the nasty outside world, which doesnt think of sensitivites to light/ sound/ touch/ vibration or wheelchair access or any of the myriad sensitivities that us RSDers have whilst knowing that preventing me from going out means I lose touch with friends and am missing out on more of my teenagers years which I never get back.

I reckon that being a daughter with RSD what mum and I have learnt most is compromise - learning how to compromise with pain. What can I do and she do which will enable me to be "normal" (excpeting wheelchairs/ carers) and join in with my peers, without spending the next week in tears in bed? how can we balance life as a family being normal with RSD - holidays have to be in warm but dry climates with nearby hospitals and wheelchair access, notes allowing the carrying of syringes and medical equipment gained from the embassies, nothing can be spontaneous.

Thats why for me going to uni was one of the biggest decisions mum and I ever made. By going 4 hours away it meant that I had to learn to live with this on my own. I had to learn the lessons that she learnt so much more quickly - she can tell by looking at my skin, my face and my body and know when I need to stop before flaring (does anyone else get "the look?").. It is scary not having someone that knows with you - my carers weren't even told I had severe neuropathic pain and that they couldnt touch me unless i had had b/t meds before they started. But it means that I cant rely on mum for everything - I know if I ring her and say i REALLY need you she'll be there, but in general I am learning to be an independent (minus carers) adult and to managing my own life -which we both feel is the main goal.

RSD has changed my family. Mum has fought against adapting to it, but realises we have to whilst trying to maintain my sence of independence - even if all that is is socialising with my friends on my own. As I've deterioated she has been incredibly strict - she will only take over and help when absoloutly necessary - when my arms totally died after an EMG she spent 2 days refusing to help me (eg feed me) in the hope that would "force" them to come back... My sister, who is a year younger than me has had to get used to mum having to spend hours with me every day, and is jealous that I get the time with mum.... she has had to learn that physically I have to come first, which is horrible for all of us. I hate relying on people and will do anything to avoid having to be. I hate that this disease has changed me as a person and my family dynamics. Luckily my family has managed to avoid the "me me me syndrome" of chronic pain - where the whole focus is on the individual - it's just our roles have changed.... in some ways its funny... 4 years on and my sister still brings up "well why can't Rosie do the washing up?". But despite the niggles RSD has in many ways made mum char and I stronger. (unfortunatly it also ended up with mum and dad divorcing....but thats been on the cards for years.. she got fed up with sharing him with 2 other women in different countries and he couldnt cope with the shame of having a cripple for a daughter...).

I go home on Wednesday to a new house, and I know the dynamics will have changed again. We have moved in with my grandmother as she is dying of stage 4 lung cancer and has been paralysed from the waist down. So mum will be looking after 2 of us, whilst working a full time job as a nursing sister to support us.

Ok this has turned into a long rant..... but mums are great!! /...and sorry this has turned into a more personal rant than I meant it too...

loads of love

Rosie xxxxxxxxxxx