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CHIARIHEAD03CHIARIHEAD03 Member Posts: 5 Listener
Hello my name is CHIARIHEAD03 , and id like to ask if anyone in this group has Congenital Hydrocephalus as well as Chiari Malformation , I am a very positive lady of middle age but im having trouble getting back into work , I was in employment in the past as well as had my own business if only small , all in the housekeeping , hospitality care trade . I have been a carer for my now 93yr old mother  but would like to do something else for me a new thing altogether , I have applied for many jobs but here in the South West the a funny about the fact I have a health issue and that I don't drive due to petit Mal . was wondering if anyone had any ideas to help me 


  • Cher_ScopeCher_Scope Posts: 3,303

    Scope community team

    Hello @CHIARIHEAD03 and welcome to our online community.  It's lovely to meet you.

    It's great to hear you have a positive outlook and that you would like to get back into work.  What kind of role do you think you would enjoy?  Would you be open to working from home?

    A few of our other members have the conditions you do, you might find these discussions interesting:
    Please let me know if you have any problems getting around the community but otherwise feel free to jump straight in and get chatting :)

    Online Community Co-ordinator

    Want to tell us about your experience on the online community?  Talk to our chatbot and let us know.
  • CHIARIHEAD03CHIARIHEAD03 Member Posts: 5 Listener
    Hello Cher Scope ,
    Thank you for your reply to my post and for giving me more info Yes I would be interested in working from home as that would be much easier for me owing to my conditions  I think and how they effect me day to day , im not always feeling that well so do really want to do much so you can see why working outside home might be an issue for employers now  and that im middle age even with qualifications and skills that I have . back in my youth even though id been employed I wasn't awhere of the state of my brain  I knew I hadn't felt well since being in school but wasn't listened too until I got to my early 30's when I had to have more brain ops , ive had four of them plus two others on different areas of me all in relation to my condition , im awaiting to see a surgeon again as it's thought my Chiari might be giving me problems again my mother had lots to do with the not listening to me too she has always been in denial just as well I stuck up for what I believe in .
     I am not sure what kind of work from home but I have a PC internet and printer , im very creative  , artistic and good at making thinking things .  
  • chiariedschiarieds Member Posts: 7,884 Disability Gamechanger
    Hi @CHIARIHEAD03 - I just wanted to add my welcome to the community. I have Chiari 1 Malformation associated with Ehlers-Danlos Syndrome (a genetic disorder), so don't have hydrocephalus.
    I wish you well in your hopes to become self-employed. Perhaps have a look in our virtual 'Coffee lounge' where there's a post called 'Kaleidoscope' where our other creative members show their hobbies/interests. Please see: https://community.scope.org.uk/discussion/41283/kaleidoscope-our-own-gallery-for-members-art-work-crafts-and-photographs#latest      I look forward to seeing you around the forum :)
  • CHIARIHEAD03CHIARIHEAD03 Member Posts: 5 Listener
    Dear Chiarieds , 
      Thank you for your reply and nice welcome to the group too along with the info too , I have been self employed for 10 Yrs previously but that was housekeeping / ironing as  good as that job is and I was found to be popular and praised for my good work , it wasn't the best for my Congenital health , hence the ideas needed for something else , your Idea definately sounds good as I love that kind of thing anyway . 
  • chiariedschiarieds Member Posts: 7,884 Disability Gamechanger
  • janer1967janer1967 Member Posts: 9,068 Disability Gamechanger
    Hi and welcome to the community @CHIARIHEAD03 glad you have joined

    Unfortunately now isnt the best time to be looking for work, have you thought of using the time to upskill yourself with a new skill that you could do from home something like child care, massage, nail artist or something different there are lots of options out there and some courses are free have a loo at future learn
  • CHIARIHEAD03CHIARIHEAD03 Member Posts: 5 Listener
    Dear janer1967 , 
      Nice to hear from you and thank you for your welcome too , Yes I have thought many times about trying a new skill again , ive been to college for 3 yrs already in my past life learning many things then and gaining not only work experience but life experience too , problem that I have now is that I don't drive and im not that keen on going back to college again as it's too much like school of which I never liked really also money is very tight as im on the lowest rate  of PIP in daily living only . 
  • janer1967janer1967 Member Posts: 9,068 Disability Gamechanger
    Hi again I was more thinking of online learning from home 

    There are some great courses on offer 
  • CHIARIHEAD03CHIARIHEAD03 Member Posts: 5 Listener
    thank you for that janer1967  I will continue to look into those ideas of yours . 

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