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Hi, my name is 6point5!

6point56point5 Member Posts: 6 Listener
Hi everyone, I'm 38 and a single mum to 5 kids, I have a long term disability and I'm starting to struggle emotionally,  I do have these moments, but all I can see isome things getting worse not better

Replies

  • Ami2301Ami2301 Community Co-Production Group Posts: 7,903 Disability Gamechanger
    Hi @6point5 welcome to the community!

    Sorry to hear that you are struggling. Would you mind telling us what disabilities you have? We want to help you as much as we can! :)
    Disability Gamechanger - 2019
  • 6point56point5 Member Posts: 6 Listener
    ok, i have ehlers danlos syndrome, Postural orthostatic tachycardia syndrome , osteoporosis, asthma, Peripheral artery disease, autoimmune disease.
    Thats it, i think, untill next time i go to the hospital and they decide to add something else to my list x
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,903 Disability Gamechanger
    You're not alone as many members of the community suffer with the same conditions as yourself and I'm sure they will be more than happy to get in contact with you to offer support.

    Forgive me but I have not heard of Postural Orthostatic Tachycardia Syndrome before, would you mind explaining what this is?

    It is incredibly difficult to come to terms with disabilities, in time you will be able to accept them by finding ways of coping them. It's just finding those ways but we can help you! :)
    Disability Gamechanger - 2019
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Hello and welcome to the community . You will find help and advice and companionship here 
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • 6point56point5 Member Posts: 6 Listener
    Postural Orthostatic Tachycardia Syndrome, is basically where your heart rate will beat so fast and this maybe because i have stood up or sat down ect, it causes me to blackout, i feel weak and dizzy, its so hard to explain but that is the easiest way for me to get it across.
    I can not do anything which will make my heart race, so no funfairs/theme parks ect. Even watching telly, i can feel my heart racing. x
  • topshoestopshoes Member Posts: 442 Pioneering
    Yes I know what you mean 6points5 and it is not nice , I have got hypertrophic cardiomyopathy 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,903 Disability Gamechanger
    God that sounds horrible! Does medication help?
    Disability Gamechanger - 2019
  • topshoestopshoes Member Posts: 442 Pioneering
    Can not give me any think to help , just a waiting game for me now lol
  • topshoestopshoes Member Posts: 442 Pioneering
    Just waiting to see pip end of month with all the other things worng with me , but how are you doing any way with is it just one heart beat what Gos nuts
  • 6point56point5 Member Posts: 6 Listener
    Ami2301 said:
    God that sounds horrible! Does medication help?
    I take so much mefication, 4 times a day, I'm on 8 co codamol , 4 tramadol, 3 pregabalin, and a new tablet to stop me having seizures twice a day. And I also take anti depressants to keep me sane x
  • 6point56point5 Member Posts: 6 Listener
    topshoes said:
    Just waiting to see pip end of month with all the other things worng with me , but how are you doing any way with is it just one heart beat what Gos nuts
    What is wrong hun? I had to change from dla to pip, but it was a smooth process
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Welcome to the community @6point5

    Scope
    Senior online community officer
  • Richard_ScopeRichard_Scope Posts: 2,871

    Scope community team

    Welcome @6point5

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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