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Hello from Alieshia

alieshia
alieshia Member Posts: 73 Courageous
Hello there! I’m Alieshia. I live with a crazy spaniel who helps (and sometimes hinders) me around the house! He’s really good at emptying the tumble drier but we fight over socks because he loves them, so first thing to know about me is I always have holes in my socks! Other things about me: I have Ehlers Danlos Syndrome, POTS, M.E and Idiopathic Intracranial Hypertension. I’m a wheelchair user and am really missing zooming about outside atm! I’m really looking forward to getting to know everyone! Chatting (I can talk too much IRL) and helping out where I can.

Comments

  • Uncommon_name
    Uncommon_name Member Posts: 9 Connected
    Oh man, I’d love a spaniel!! He’s sounds a lot of fun. What’s he called? 
    I don’t have any pets but my toddler just loves to empty the clean washing from the machine on to the floor if that counts? Lol

    I’m told I can talk a bit too much IRL too! 

    I haven’t heard of idiopathic intracranial hypertension do you mind if I ask what it is? I mean I know I can Google but nothing is quite the same as hearing from someone directly! 
  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    Hi @alieshia and welcome again to the Community.  How are you today?  It's nice to meet you and thank you for sharing your interesting introduction with us.  Your spaniel sounds lovely!  They are great fun and I bet it is really funny when he empties the tumble dryer, but not so good for your socks, lol!  

    Here you will find we all have varied disabilities/health conditions, we all support each other with them and we are here to support you anytime too.  We are a friendly bunch of people on here and we all love to chat too!  I hope you enjoy your time with us on the forum and find it a helpful place to be.  If we can be of any help at all to you then please just give us a shout.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • alieshia
    alieshia Member Posts: 73 Courageous
    @Uncommon_name His name is Harry  <3 

    I don't mind you asking at all! Idiopathic Intracranial Hypertension (IIH) means that you have too much CSF fluid between the brain and the skull, this causes increased pressure in the skull and squashes the brain and the optic nerves. The main symptoms are horrendous headaches and vision loss. Its usually treated by a combination of medication and repeat lumbar punctures to drain the excess fluid off. Some people require a shunt in the brain to drain the fluid away daily. 

    I had a lumbar puncture last Wednesday so I'm feeling pretty good atm  :) 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,269 Disability Gamechanger
    Hi @alieshia - Welcome to the community, & pleased to 'meet' someone else with Ehlers-Danlos Syndrome. Myself & family also have problems due to Chiari 1 Malformation as well as hEDS, so understand about your problems with cerebrospinal fluid (CSF). As Ails says, we do help & support each other, that's what this community is all about. I'm sure you'll fit right in with wanting to chat, & help too. :)
  • alieshia
    alieshia Member Posts: 73 Courageous
    @chiarieds Thank you! Lovely to 'meet' you too! I look forward to chatting more  :)
  • janer1967
    janer1967 Member Posts: 15,250 Disability Gamechanger
    Hi @alieshia Welcome to the community nice to see new people here, seems like you have a lot to deal with but its great you remain so positive as do so many people living with disabilities. 

    Look forward to seeing you around 
  • alieshia
    alieshia Member Posts: 73 Courageous
    @janer1967 Thank you! I have bad days like everyone but whilst I'm up I like to try and do everything I need and want to so I can take a duvet day or two for the down days. 
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Welcome to the community @alieshia :)
    Disability Gamechanger - 2019
  • alieshia
    alieshia Member Posts: 73 Courageous
    Hi, @Ami2301we're friends on Twitter  <3 I finally joined!! 
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    I thought it was you! I just didn't want to assume ? glad to finally have you here, how have you been? :)
    Disability Gamechanger - 2019
  • alieshia
    alieshia Member Posts: 73 Courageous
    Really good thank you! I spent a week in the QE and had an LP so feel loads better for now. I've started to train to become a journalist. Very early days but that combined with my blog I hope to be able to make an impact one day. How are you?
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    How did the LP go? I hated having mine ? glad to hear you're doing okay now :) oooh, journalism! How you finding it so far? I've not been up to much at all, apart from a few hospital trips, haven't blogged for a while either as I've had no motivation, other than that, I've not been too bad thanks :)
    Disability Gamechanger - 2019
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Great to have you here @alieshia
    Scope

  • alieshia
    alieshia Member Posts: 73 Courageous
    @Ami2301 I literally fell asleep during it!! I'm in double figures easily now so they don't bother me at all. The journalism course is information overload and my brain is on fire this evening, going to TRY and get an early night... lol 

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