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Sam from Lincoln
McBreadle
Member Posts: 7 Listener
I was diagnosed with hEDS back in January have been struggling to cope!! I also have fibromyalgia, PCOS and complex PTSD!! My physical and mental pain are getting worse and I hate that I'm relying on loved ones more and more!! I turn 38 next month so I'm not exactly "getting on" but not exactly "a youngster" either!!
I just wanna find people to connect with who understand what I'm going through!!
BTW I used !! At the end of every sentence, it's a quirk of mine!! Xx
I just wanna find people to connect with who understand what I'm going through!!
BTW I used !! At the end of every sentence, it's a quirk of mine!! Xx
Replies
Hi @McBreadle - thank you for taking the time to join the community. We are here to help, connect and support each other. I sorry to hear about your many health struggles. You may find posting in different groups a way to connect, have a look around. You may find some interesting posts https://community.scope.org.uk/categories/chronicpain from others. Take care and keep sharing.
I hope you'll get stuck in and start chatting with others here, but give us a shout if there's anything we can do to help.
Scope
If you have a few minutes to spare, we'd appreciate your feedback on our online community.
I have just joined for the same reason, my EDS is constantly punching me about at the moment.
i has some TIAs last year and that was the point I had to stop pretending to be normal!
Relying in anyone is very difficult for me, until a short while ago I was a typical alpha male, full of drive, and happy to be supporting others, that changed. Surprise, when the money dried up, all but a hardcore of friends disappeared into the night, but the ones who stayed have learned to accept, and support the “new” me, and I am learning to accept that support.
I wonder if that rings any bells? They have had to constantly tell me that it’s OK not to be OK, and that they are there... but I feel guilty!
my wife has seen our income fall apart, and our activities are severely restricted compared to before, but she has stuck with me, and made the new me feel normal.
i won’t bore you with all of the acronym for my bodily and mental failings,but it has seemed a time of clarity for me, I wasn’t mad, or making it up, or just stupid...all of the things that have plagued me for my whole life became clear...even why even intensive training did little to my muscle mass!
always happy to chat if it’s getting a bit much...provided it’s a day when my brain woks!
Luckily, my wife has stuck by me as all of this happened, I now know many who have not been so lucky!