Jeramy’s FND Journey

Tag: My Story

  • 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…

  • 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…

  • DISABILTY SUPPORTS STARTS – REFLECTIONS – NDIS

    DISABILTY SUPPORTS STARTS – REFLECTIONS – NDIS

    I don’t accept gaining support from the government (NDIS) as a victory or something to celebrate. We need to change the perspective; people with disabilities shouldn’t need to fight and live their worst lives before support is possible. People with disabilities should have access to support. We need to change our perspective from the NDIS…

  • 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!!

  • 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

  • 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,…

  • 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…