Jeramy’s FND Journey

Tag: Blog

  • 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,…

  • 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.

  • Juggling Medications

    Juggling Medications

    Every three months I see my pain specialist at Sydney Spine & Pain for a review, check on the stimulator and an open discussion on the reduction of my pain medication. We discuss the decrease in my pain patch, whether to juggle the medicines for neuropathic pain and mapped my pain levels since we last…

  • 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.