Had since i was age7 (stils desease) Now 50 and i learnt->

stuthebru

hi This is my first post,my others will not be so positive,since after being told no more sicknotes needed in 1992 i now score no points in the DWP tests,and with twisted hands that only half open and hospital shoes 15years,im in protest to it all,, But im happy seeing this group as id like my first post to be on the positive side,and if you can forgive my poor grammar,these are lessons hard learned,and with my grammar all i can do is tell it the way ive seen it,,thank you
So i was born with a very rare genectic disorder,it made my ligarments 20-25% shorter,which as i grew was mostly apparent in my hands,which grew to one side and didant open fully. i have also been skinny all my life maybe dew to my thyroid (35 years at 9 stone yet 5 foot 11+,,over active thyriod "gaves desease").
so in school i wasant any who got picked first into any football team,or sports,people said id make a better javelin,and it took me untill age15 to get my first girl-frend ,, now for the deep stuff ,,,,
At age 10 i heard"The Beatles" and went mad on them,,by age 11 i was learning guitar and started my first band,,we played school disco"s and any event we could,we thought we were the beatles in a lol kind of way,,
now believe it or not i now know it was "my higher self" (the part of us that lives many life times and after our body dies)and my higher self was using ambition and the love i craved as the carrot to get me to do the hard work of learning,,well i never got the fame but i did get the music,and saved my hands ,,, my left hand opened playing cord shapes,and now its my main hand (mouse with it ect) in my right hand still the main joints are stuck half open (shame i didant learn piano as a teen properly,and since teenage years nothings got better just the joints more unused are 2x bigger)
yes its always hurt,yes i give up everyday it can be that bad,
But there is another part of me that knows I AM NOT MY BODY and this burning we call pain is only taking away the part of me that is not me,it will leave only my true self,
the key is "we are what we think we are" Like my wise dad once said "think fung fu not wheel chair" meaning that im "Bruce Lee not a cripple",and thats kept me going 25 years from a time i could hardly get up stairs ,, live in what your doing ,,be creative it helps us seperate better
around age 30 i crashed my first car in a wall at at least 60mph (drove it 150k miles before i had my first crash and id hit a flood of water across the road)took out 15 feet of wall,car had no front end and the back seats were pushed upto the front seats,and id bent the stering wheel over,in a chi effort seeing the wall coming,no one could bend it back,,Anyway my point is i missed the bang as i had an out of body experience,and i saw my life flash before me as they say,but mine wasant watching "the film of it" mine was just a mass of colours in a frame,as if it was all showing at once,and an inner voice said,,,,"this is what your life amounts to,and do you see the diamonds" suddently 4-5 diamonds grew out and shone all pure and perfect,,,,"these are your main achievements,and are why people live,to grow some of these" almost as if life was a garden,and then i knew, those were my main achievements To of learnt to play music with twisted hands,To of learnt selfless love by really putting someone else first,,im not sure about the others as i then understood they were all things id gone beyond myself with.
as a westerner im a christian,but without going into religion,id like to say that in general western religions are baste on faith,eastern religions on discovery and self evolution,which of course science is now relising (see inner worlds outer worlds documentary on youtube ,"wonderful colours if nothing else")
So my experience that life is evolution fits very much with buddhism and science,and it makes sence THAT IF WE SUFFER,OR GO BEYOND OURSELF,ITS TO GAIN THE FRUITS OF KNOWLAGE THAT WE PAY THE HIGHEST PRICE FOR,,why me you can ask,,because everyone goes through it in some life time,how else can true compassion be found,so ill leave you with a short little answer it has cost me so much to walk ,,,peace and love and much compassion ,,-

Needs bring experience,
experience brings Love,
love falls to ego,
through love without ego and selfless love is found,
selfless love leads to compassion,,
and i think wisdom is coming next
ill let you know,,, haha stu

[Deleted User]

Hi Stu,

Welcome to the forum, it's a great place to get support and advice, if you dive into Chit Chat you will find many ways to share laughter too!

I moved your post here to Living with Arthritis but left a copy in Young Person's too.

Take care
Mod YEH

stickywicket

Hello Stu and welcome to the forum. I, too, have Stills Disease. At least, I do officially, though I tell everyone it's RA as no-one's heard of Stills, I can't be bothered with long explanations and I haven't got any of the Stills complications anyway. However, you seem to have a lot more going on besides Stills and well done for the way you have overcome your difficulties. I'm sure you're right that a positive attitude makes a big difference in how we cope.

I'm sorry you've had problems with the DWP. You and many others on here. We usually advise people to enlist the aid of CAB when they appeal. They're very good and helpful.

dreamdaisy

Hello, it's nice to meet you and I hope today finds you as well as possible. I had a very sickly childhood but was blessed with a determined mother who taught me to get on with things regardless, which is what I try to do. I think we all have the ability to surprise ourselves with what we can manage and achieve but it can take a fair amount of courage and self-belief to do so (both of which can vanish in an instant with any form of setback). Sometimes the disease is not the challenge - it's the ability to 'bounce back' from the setbacks and carry on as before which is the difficult part.

I wish you well. DD

theresak

Hello and welcome. I was one of the `lucky` ones who didn`t get RA until I was an adult, and fairly late on at that.

I believe life is what we make it, and don`t intend to be defined by my condition.

I really like your positive attitude - that`s the way to go!