Jeramy’s FND Journey

Category: Disability

  • 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.

  • 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.

  • 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…

  • 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,…

  • 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…

  • A Day in Rehab

    A Day in Rehab

    Each afternoon I head to the gym. This is 45-60mins of pain. I am pushing through the tremors and doing essential, repetitive exercises and mainly focusing on two things. 1. Conditioning and strength building, 2. I am working on resetting those signals with the brain through repetitive tasks.