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my name is of course not Cavailia

cavailiacavailia Member Posts: 13 Listener
sorry i had no idea what to write sorry its long

Hi I am sharon but most call me sharri and lately cav due to my username. I am 44 years old I have a lot of medical issues most caused by or a symptom of another condition.
I enjoy films, i love my tiny dogs i like to listen to books as i cannot hold a book anymore.
I am a mum to 5 kids almost all fully grown. My husband and i have been married 26 years and recently he was diagnosed with autism. This was after finding out two of our children have autism also.
my youngest son is 15 he has autism,odd, adhd, dysperaxia and hypermobility

I was only diagnosed with hEDS around 3 years ago after being told it was probably arthritis many years of misdiagnosis and feeling fobbed off but its good to know but i also feel bad as i have passed hEDS on to 3 of my children 

I have Ehlers-Danlos Syndrome hypermobile type (hEDS) a genetic degenerative conective tissue condition.
Fibromyalgia
IBS
incontinence
Moderate/severe obstructive sleep apnea
asthma
eczema
menhoragia
tilted disc in my eyes (also being tested for papliodema)
migraines
chronic fatigue
anxiety and panic attacks
vit d deficency
anemia
familial hypercholestrimia


I was recently put forward for a wheelchair by my doctor but as i cant use it inside due to my home being small i was rejected so i am trying to save up to buy my own. I have a knee brace and awaiting fitting for my second one. crutches wrist splints and many other aids to try and make my life easier.
I live in wigan but really want to move back down south where i grew up.

Replies

  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @cavailia, and a warm welcome to the community! Thanks for sharing this with us. We have quite a few other members with hEDS here on the community too. Do get involved, and if we can be of any assistance, just let us know!
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @cavailia Pleased to meet you welcome.

    Thank you for joining and sharing.  Please do not apologise for a long post. You have come to the right place for support, advice and also friends.

    Please ask if we can advise on anything. Some one will know. Always some one here to listen.

    Hope that helps. 

    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
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello Sharon, Sharri, Cav and @cavailia :smile: and a very warm welcome to you.
    That's a fascinating username - I'd love to know how you came up with it unless, of course, it's a secret.
    I have never had the privilege of owning a dog, though I'd love to, and have had to live with cats instead. Fond of them, but they're not the same are they? And I'm into movies and books. I'm currently reading everything that Lucy Maud Montgomery (Anne of Green Gables etc) wrote and thoroughly enjoying it. I watch movies on DVD, most recently "The Cruel Sea", "The Viceroy's House" and "A Night to Remember". How about you?
    After a quick look I found hEDS posts in a wide range of our categories. You could try doing as I did and putting 'Ehlers Danlos Syndrome' into the Search box at the 
    top right hand of the page, or you can click on this link to get to a list of our categories.
    Hope some of this is of some use, and I look forward to hearing more from you,
    Warmest best wishes,
    @JennysDad
  • cavailiacavailia Member Posts: 13 Listener
    @JennysDad thank you i am listening to Robin Hobb at th moment I am lucky that I have adult children still at home and a husband who help care for the dogs. we have small pomchi's and chihuahua's and a 21ft garden so plenty of room for them to run when walks are not possible.
    I have netflix amazon prime and now tv plus a lot of dvds so always something i can watch. just watched daybreakers
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    edited November 2018
    Hello @cavailia and thank you for getting back to me. Sorry I wasn't able to respond sooner.
    I'd never heard of Robin Hobb until you mentioned him, but I've had a look at his work and at "Daybreakers". Seems you're into the fantasy/science fiction genre? I read a lot of sci-fi books when I was younger and love the movies. I like fantasy too, but don't seem to see much of it.
    I use the Amazon fire (?) stick to access stuff beyond ordinary tv releases, and watch a lot of the Walter Presents stuff - crime and thrillers from Europe.
    I've always wanted to have big dogs - German Shepherds, Dobermanns, things like that, but have never had the space.
    Do keep in touch with me if you are at all inclined to :smile:
    Warmest best wishes,
    @JennysDad
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @cavailia

    Welcome to our online community/family.

    You sound like you have got your hands full.

     “which isn’t a bad thing”

    Yes it’s a good idea 💡 to have “Netflix & Amazon Prime” 

    There’s not much on the “TV” nowadays.


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