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Hi, my name is zarozinia!

Hi everyone 
I’ve had M.E . For 12 years and my mobility has reduced so much lately that I cannot get out without using a wheelchair etc. So I’m discovering that it’s a whole different world in a wheelchair or on a mobility scooter. There seems a lot to learn and so much planning for journeys. 
So Im here to learn and also going through an ESA reassessment whilst applying for pip and a blue badge. It’s all quite stressful so I’m hoping to find some help here. 

Replies

  • jane1973jane1973 Member Posts: 175 Pioneering
    [email protected] this is a great place for help and support I’m sure if you have a look round u will find some great info on here xx
    Hugz to everyone xx
  • jane1973jane1973 Member Posts: 175 Pioneering
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Welcome 
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,471 Disability Gamechanger
    Hi @zarozinia
    Welcome to the community! Please let us know if you have any trouble finding information and we will guide you there :)
    Disability Gamechanger - 2019
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @zarozinia, and a warm welcome to the community! Do get involved, and let us know if we can be of any assistance.
  • zaroziniazarozinia Member Posts: 4 Listener
    Thanks everyone for the warm welcome. 
    Despite being a nurse for 15 years (rheumatology nurse specialist) until I developed ME, my eyes have been opened a lot in recent months and even more so the last month where I’ve lost the ability to walk safely on my own for more than 10 metres or so. I am amazed at how different people treat me and look at me on a wheelchair, and gobsmacked how poorly equipped places are for wheelchair users - I’m struggling to find a dentist I can even access! 
  • jane1973jane1973 Member Posts: 175 Pioneering
    @zarozinia I bet you know the core values of the nhs then? I completed my care quality certificate in my local hospital whilst working on my orthopaedic elected surgery ward, now that I was dismissed due to ill health I don’t see anyone treating me with the same values, it’s such a shame I loved that job





    Hugz to everyone xx
  • zaroziniazarozinia Member Posts: 4 Listener
    It’s actually 14 years since I was a nurse, I left nursing a year before I had ME as I was disgusted at they way I was treat when I had Bell’s palsy and needed time off. I have everything as a nurse and when I had Bell’s palsy my husband left leaving me a single parent coming to terms with a disfigured face. They wanted me to return to work too soon and do nights even though I explained I had nobody to care for my daughter at home yet who cried herself to sleep every night for two months as her daddy was gone. I offered to do a whole stint of 4months of nights as soon as I could but needed to just work days for a couple of months. They said no so I left. My daughter came first. But they lost a good nurse who had been dedicated. I’ve no regrets. 
    Core values as a nurse to me are also the core values I grew up with - treating others as you expect to be treat. 
  • jane1973jane1973 Member Posts: 175 Pioneering
    @zarozinia you have had a tough time  ive also been a single parent for 21 years with no help from my girls dad but have been able to work and provide my daughters with good times and supporting them through school but this illness has taken its toll and i am a different person because of it
    Hugz to everyone xx
  • zaroziniazarozinia Member Posts: 4 Listener
    Hi, it certainly does take its toll. 
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