Jeramy’s FND Journey

Tag: Jeramy Hope

  • Routine Laparoscopic Surgery

    Routine Laparoscopic Surgery

    The longer I take to recover from an illness or procedure, the more my routine becomes disrupted. This leads to a ripple effect: increased pain, limited movement, tremors, and muscle weakness. Ultimately, if I cannot return to a normal routine within 6 to 8 weeks, I may need to go back to the hospital for…

  • 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.

  • 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,…

  • When Life Gives You Lemons.

    When Life Gives You Lemons.

    Balancing ‘normal’ family life, work, and the day-to-day hiccups we call life together has always been challenging. So adding a functional neurological condition, compounded with chronic pain, was not a welcomed bedfellow. While working through my new normal, we have needed to concurrently navigate some significant medical concerns with one of my daughters. Jenna has Autism, making planning…

  • The New Normal

    The New Normal

    My doctors think I am pushing harder than others with similar conditions. I’m convinced that I need to do more, and my family are providing the balance.