Jeramy’s FND Journey

Tag: Family

  • The Power of Self-Advocacy: Choosing Hope in a Broken System

    The Power of Self-Advocacy: Choosing Hope in a Broken System

    I don’t say this lightly: I live in a body that often betrays me, in a world that isn’t built for me. Navigating to the shops can be dangerous and inaccessible, often resulting in falls. My home, which should be a sanctuary and safe place, is far from it because of my disability.

  • Nine Months of Self Discovery

    Nine Months of Self Discovery

    With this retrospective look on life and health, it was easy to track the starting points of my disability and the ways that, over nearly 20 years, I pretended to be okay until I couldn’t.

  • It’s Been a Month

    It’s Been a Month

    I am learning to be selfish in sacred areas (my family, my exercise & daily stretches, my children, reading and music, and the simplicity of doing nothing). I have found that as I reorient my perspective and be happy in myself, whether having a lousy day, celebrating a win, or being grateful, I can still…

  • DISABILTY SUPPORTS STARTS – REFLECTIONS – NDIS

    DISABILTY SUPPORTS STARTS – REFLECTIONS – NDIS

    As I have been exploring my local surroundings, workplace, shopping centres and city centres, I have been frustrated by the lack of access, inclusion, and understanding/care for people with disabilities. I am invisible to people around me. I am often knocked over, run into, and have countless near misses because people are too busy to…

  • NDIS Take 4

    NDIS Take 4

    I got emotive at the NDIS hearing, explaining all the work I had done over the 12 months prior, the reports, the specialists consults, the thousands upon thousands of dollars spent on reports, working with a specialist OT going line by line over the NDIS access guidelines.  I’m still not being heard!!

  • Loss; Coming to Terms with a Permanent Disability.

    Loss; Coming to Terms with a Permanent Disability.

    If I’m being honest, I’ve been quiet these past few months (on social, blogs, and talking about progress, or lack thereof). Writing has been too hard because life’s been hard.

  • NDIS Knock Back No. 2

    NDIS Knock Back No. 2

    I have been working on my NDIS application since August 2022, with nearly six months of evidence collection, specialist appointments, and storytelling. Rejected. #fnd #fndawareness #fndwarrior #fndaware #withfnd #chronicillness #disability #functionalneaurilogicaldisorder #functionalneurologicaldisorderawareness #functionalneurologicalsymptomdisorder #functionalneurology #NDIS

  • Disability Support Declined

    Disability Support Declined

    In my previous blog, I wrote about the fact my disability is permanent. My current state is my new normal. The ironic thing is that the NDIS declined my application due to their opinion of my disability not being permanent or, in NDIS language, ‘fully treated’. This is despite having letters confirming my disability from…

  • My Disability is permanent. My current state is the new normal.

    My Disability is permanent. My current state is the new normal.

    This doesn’t feel like a completion or a success. Yes since hospital admission I have progressed from a standing frame, wheelie walker to crutches. But then we have a full stop. I have arrived at my new normal. I’m struggling to be ok with this.

  • The Story So Far

    The Story So Far

    I’ve had so many diagnoses over the years that it’s laughable. Muscle strain, muscle spasms, cramping, bursitis, partial dislocations of the hip, ataxia of unknown origin, arthritis (at various times noted in the hips, knees, and back), deferred pain, mainly in the stomach (which led to so many stomach-related investigations), chronic pain, lower back pain,…