Welcomes and introductions
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.
Concerned about another member's safety or wellbeing? Find out how to let us know.

Hello! Anyone else with multiple disabilities?

Hi everyone. I have multiple disabilities, and had to leave full time work because of my health. Ehlers Danlos syndrome type 3 (hypermobility), Fibromyalgia, Raynauds and Arthritis. I'm also asthmatic, autistic and a type 1 diabetic. Having so many health conditions becomes overwhelming sometimes. 
For someone who is a qualified teacher, having fibro fog and cognitive impairment as a result of my health is INCREDIBLY frustrating and also feel like I wasted 4 years of my life training for a career that caused me a lot of stress that resulted in my health deteriorating to the point I could no longer work full time.

Replies

  • WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
    Yes and I ended up housebound at one point and thought this is it.
    Autism
    Fibromyalgia
    Bowel Problems
    Currently waiting for specialist as busted joint ligaments.
    Austerity cured my issues and stopped my Care Plan and Direct Payments
    DWP screwed me over and MP fixed first time weeks later
    DWP screwed me again.
    currently self employed / unemployable
    HMRC NES do my tax for me
  • katyanakatyana Member Posts: 1 Listener
    Hi I have migraines and breathing problems and even though I do work i find things hard on occasions I did recieve DLA or pip as it’s now called but now I recieve nothing and have to pay for my medication now which is hard sometimes.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @PurplePhoenix24   Pleased to meet you welcome.

    Thank you for joining and sharing. Sorry to hear what you are going through.  This is the right place for information, support and most of all friendship.

    I am one of the team of community champions. We guide, advise and help new members who join.

    Please have look around our forum and website.  We are friendly, care and share.

    Feel free to join in discussions.

    Please can I add also do have the following organisations and associations that may be of use to you.

    https://www.ehlers-danlos.org.

    Helpline 0800 907 8518

    The Autistic Society  Helpline 020 7833 2299  Monday to Thursday 10.00am to 4pm. Friday 9am to 3pm.

    Email [email protected]

    Please ask if we can help with anything.  Some one will know a member of our team or member of our community.

    Please I hope you enjoy your time with the community .

    Please take care.

    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
    katyana said:
    Hi I have migraines and breathing problems and even though I do work i find things hard on occasions I did recieve DLA or pip as it’s now called but now I recieve nothing and have to pay for my medication now which is hard sometimes.
    Get a prepaid certificate for prescriptions £10.79 month from memory v £9 an item
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Hi @PurplePhoenix24 and welcome to the Community.  It is nice to meet you and thank you for sharing with us.  I'm really sorry to hear of your health struggles and the fact that you have had to give up your career.  That must be heartbreaking for you.  Please be assured that the Community is here to support you so please feel free to chat to us anytime.  You will find it to be a lovely, supportive space with lots of friendly people on it.  Please keep in touch and let us know how you are getting on.  If there is anything we can help/support you with then just let us know.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Hi @katyana and welcome to the Community also.  It is also nice to meet you.  I hope you enjoy your time with us.  Sorry also to hear of your struggles.  If there is anything we can help/support you with then just give us a shout.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • chiariedschiarieds Community Co-Production Group Posts: 10,091 Disability Gamechanger
    Hi @PurplePhenix24 & welcome to this very supportive community. I don't face the multiple disorders you have, but as someone who also has the hypermobile type of Ehlers-Danlos Syndrome (hEDS) just wanted to let you know I understand at least this disorder, & the arthritic pain it causes. I don't have fibromyalgia, which does co-exist with many who have hEDS, 'tho I do most likely have Chiari 1 Malformation (a neurological problem) which is also found in an unknown percentage of those who have hEDS.

    @thespiceman has already given you a link to our UK Ehlers-Danlos Syndrome website, which if you hadn't already known about may be helpful. If your GP doesn't understand hEDS very well, this GP's toolkit may be also be helpful, as it shows that hEDS can affect many parts of the body: https://www.rcgp.org.uk/eds

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @katyana   Pleased to meet you welcome.

    Thank you for joining and sharing. Sorry to hear this please if we can be supportive or need some advice or guidance.

    Please get in touch.

    I am one of the team of community champions. We help new members who join the community.

    I hope you enjoy your time with the community.

    Many new friends and lots of information on our website.

    Please take care.

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Adrian_ScopeAdrian_Scope Testing team Posts: 8,052

    Scope community team

    Hi @PurplePhoenix24 and welcome to the community. Thank you for joining us and I hope we're able to offer you plenty of support.

    Welcome @katyana. Glad to have you with us! :smile:
    Community Manager
    Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
Sign in or join us to comment.