Adhesions sufferers you are loved!
Help for ARD, Friends of Pain!
Found this great book there are not may out there for ARD and this really is a good sign that maybe one day there will be help and support for us all. See links below!
What i really don't understand is there is not alot of resources in UK and few more beyond. After trawling the internet i have found very little information most of the sites hold all the same information that is repeated.
Today i have deceided i am make a pledge to myself that i am going to start a forum support and help for people who not only suffer with ARD but Chronic Pain too in for people primarily in the uk. The silent sufferers of these awful conditions have nothing, just the pain. I am one of them and i have looked for 5 years for support groups, people to talk to, finding new friends, as now life has changed so much most needs and support has changed and it has been a hard and long learning curve having life smashed by a curve ball.
While typing i sit here and ask myself am i the only one that is in this, i can answer myself "no", am i the only person constantly suffering this pain "no" strangely enough it feels as though i am. Single and ill whats happens next? Will i be single forever? It changes the whole dimesion of your life, the things that were done before without thought now are a real effort, and hope that you will achieve the simpliest of things.
I remember the day sat in the hospital and The Dr sitting opposite me saying "we are sorry but there is no more we can do!",my friend sat beside me looking horrified, slowing all thoughts down, with hope in my heart i reply "its ok i am ok, i can cope!" little did i know that yes my brain wants to cope and my heart has full intentions of coping, then reality hits its a struggle, its hard and no tasks are easy. Sounding off helps yes of course but still the pain, and thats just the start.
So i now go back and ask myself, there must be something that can help, there must be someone to talk to... the simple answer is there isn't. Doctors dont understand, even friends and family struggle to cope and understand they stand back helpless, but most importantly of all is the sufferer, me, you our hopes, needs and support.
Dont get me wrong i am not ungrateful, some of my friends and family do support and help but its not enough, sounds bad i know but if you are suffering with a long term illness maybe you are thinking the same but just dont have the heart to say it. I understand, we love them and are so thankful for their support, but daily my thoughts turn to its not enough! When faced with pain and illness my needs changed, my family and friends didnt, good in one way as it keeps stabilty but hey on the other i have changed so much not sure if the friends i have can accommodate my needs now. They know im ill but struggle to understand and sometimes expect my hyper former self to jump out and retun to being ok, the reality is it i wont and i know they mean well but it sometimes makes things worse.
Sounding done for now! hope that this gets read by people like me and it helps in some way even if small x
- Hope For Those Who Suffer From Adhesion Related Disorder.: Adhesion Sufferers, YOU ARE LOVED!
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