Jeramy’s FND Journey

Tag: story

  • 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.

  • 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.

  • Visit to a specialist

    Visit to a specialist

    The more I document, reflect, and share my story, the more I accept that this is a permanent condition. Yes, there are ways to ease my pain, improve mobility, reduce muscle tightness etc. The simple fact is I have a disability that I and others around me will need to adjust to this constantly.

  • FND, I didn’t sign up for this.

    FND, I didn’t sign up for this.

    I have been struggling this week! I’ve started the journey this month of collating evidence of my permanent disability. I have found this confronting, and honestly has lowered my mood. Having to ask health professionals to test and prod, explain my FND symptoms has caused me to reflect back on my flare-ups. I’ve dug up 7…

  • My FND NDIS Journey Begins

    My FND NDIS Journey Begins

    The single most challenging thing I have needed to do on this seven-year journey with a functional neurological disorder (FND) is formalising the diagnosis. Formalising the diagnosis requires me to be honest with myself. Meaning I can no longer mask or hide from my unusual walk (FND gait disorder) and other unusual symptoms. As a…

  • 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,…