Hi, I'm wheelartist! I have spinal stenosis, scoliosis, and CES. I like photography and drawing

Wheelartist
Wheelartist Community member Posts: 5 Listener
in Start here and say hello!
I’m wheelartist I have spinal stenosis, scoliosis and cauda equina syndrome had perthes disease when I was little which left both my hips malformed, I love drawing, photography, chatting.  Making people smile , was also born with major heart defects which my mum was told I wouldn’t live to b 10 well I’m nearly 50, so drs didn’t know what a fighter I was.  Became a wheelie at 21 due to worsening mobility, I live in supported living can’t visit relatives as their homes aren’t wheelchair accessible 

Comments

  • Tori_Scope
    Tori_Scope Scope Posts: 12,443 Championing
    Welcome to the community @Wheelartist :) This is the post I made for you.

    Thanks so much for joining the community, and for telling us a bit about yourself and your experiences. If you enjoy drawing and photography you might be interested in checking out our KaleidoScope thread for members' artwork, photography, crafts, and anything else creative! This thread is in the coffee lounge, which is the best place to head if you're looking to take part in some casual conversation or games. 

    I'm sorry to hear that you find it difficult to visit your relatives due to their homes being inaccessible. Are they able to visit you instead? 
  • chiarieds
    chiarieds Community member Posts: 16,360 Championing
    Hi @Wheelartist - & welcome to this friendly community. Thank you for joining & sharing about yourself. It's good to 'meet' someone with such a positive attitude, & I look forward to seeing you around the forum. :)
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,611 Championing
    Hello @Wheelartist and welcome to the community.
  • Wheelartist
    Wheelartist Community member Posts: 5 Listener
    Hi Ross 
  • Wheelartist
    Wheelartist Community member Posts: 5 Listener
    Hi tori_scope sadly mum don’t live far away but she’s not good at present due to her back playing up. I haven’t seen her since January 2020. Due to the supported living place where I live until September wasn’t allowing guests due to their covid lockdown rules.  No one else bothers 
  • janer1967
    janer1967 Community member Posts: 21,922 Championing
    Hi and welcome to the community from me too I am a wheelchair user too and it does impact on which friends and family you can see 

    I don't live near any of my friends or family so rely on them coming to me which isn't often but they have their own life as well 
  • Tori_Scope
    Tori_Scope Scope Posts: 12,443 Championing
    I'm sorry to hear that @Wheelartist :( Are you able to keep in touch with them by text, phone calls or video calls, or anything similar? 
  • Wheelartist
    Wheelartist Community member Posts: 5 Listener
    Sometimes gets me down. Anyone know a way to fall to sleep? I’ve been awake since Tuesday morning
  • Tori_Scope
    Tori_Scope Scope Posts: 12,443 Championing
    That doesn't sound good at all @Wheelartist. I suppose it depends- what do you think is keeping you awake? 
  • Wheelartist
    Wheelartist Community member Posts: 5 Listener
    Sometimes pain levels, sometimes my body just can’t seem to get a good position, sadly I can’t lay on my back or my right side.  Currently can’t sit for long periods.  I don’t know about others in our online community but I find when I say to ‘able bodied’ drs, carers /family but they always think that, just trying to close my eyes I’ll drop off to sleep. 
  • chiarieds
    chiarieds Community member Posts: 16,360 Championing
    Hi again @Wheelartist - whilst I can't guarantee the following link will help, I do hope so. I'm in a similar position pain wise, & have difficulty finding a comfortable position in which to sleep. Sitting increases my pain, so is not an option.
    Anyway, this is what I taught when I was a physio student, & which I now use every night to help me sleep; it may take a bit of practice for yourself, but hopefully worth a try. Ignore that it mentions lying on your back with a pillow under your knees, just get yourself in the most comfortable position for you. I would suggest trying this breathing exercise during the day, so you get the hang of it so it's then easier to use in bed. Please see: https://www.guysandstthomas.nhs.uk/resources/patient-information/therapies/abdominal-breathing.pdf

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