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Hello
bam
Member Posts: 331 Pioneering
I just wanted to say hello to everybody out there. I hope all of you are in your bed sleeping since its the middle of the night now in the UK. I hope everyone had a good day. My day was pretty good. I'm still new here and I hope I'm posting in the right place, if not please tell me
Replies
it is caused by a faulty gene which governs collagen
there is no cure but treatment includes physiotherapy, occupational therapy, pain management and psychological therapies such as cognitive behavioral therapy and counselling ( which is sometimes offered to help someone come to terms with diagnosis) I am trying hard not to explain it in medical jargon but finding it challenging as this is how it was explained to me.
I hope I have managed to clarify it for you
be horrible. The one thing I always hated most about being sick was having people come up to me and say don't worry God has a plan for you. They sounded like my pain was almost insignificant. I had never heard of that disease before. I know how difficult my life is because of MS and then I hear about how difficult your life is. I almost feel like I'm whining about having MS
I decided to do some research into MS as I feel my lack of knowledge may cause offence. It sounds equally as painful and horrible. I couldn't help notice similarities in the two (MS and EDS) both feature pain, fatigue and bowel and bladder dysfunction and muscle spasms and weakness. I apologize if this is not correct I looked on NHS choices as that has proved to be a reliable source when I have looked into my disabilities.
Unfortunately patronizing and derogatory comments are something I can easily relate to as I am sure a lot of people could who suffer from chronic conditions. I personally have had my fair share including the one you mentioned "don't worry, God has a plan for you" I have also been told to "get over it" and "maybe you should pray more or gain some weight" as well as a long list of other ridiculous comments. I have found these sort of comments unfair, upsetting and deeply offending. However I have learnt to not let it phase me. they're lack of understanding and sheer ignorance is their problem, not yours. so sympathize with them instead. In my opinion people generally mean well... but go about it the wrong way. Once a guy came up to me claiming that if I put two table spoons of salt in my glass of water and drink this 8 times a day I would feel miraculously better ! My response to this was to laugh at him tell him to do his research and then go about my day. My point being do not let anyone pull you down.