Tag Archives: Functional Neurological Disorder

a yellow pencil in between the pages of a notebook

My Disability is permanent. My current state is the new normal.

Rehabilitation has been a large part of my weekly routine since late august (between 5-14 hours per week) and it is coming to an end.

Rehabilitation finishes

After nearly 5 weeks in the hospital, close to 12 weeks as an outpatient, I have two sessions left, i.e., 4 hours of support left.

This is something that I have been told to celebrate, as rehabilitation finishing means I have met my clinical goals. I’ve entered into a phase of maintenance. Bluntly for me a place of realisation that this is potentially the best I will ever be.

I’ve seen this happen before over the past six or so years. It’s been tough, but I’ve somewhat improved to a point I can mask and ‘pretend’. This is what has hit me so hard, in previous times of intensive rehabilitation we’ve seen more improvement.

This week I was encouraged to celebrate that I could walk (with crutches) marginally faster, however I was slower in my sit-to-stand times, and my falls have continued at least once per day.

This doesn’t feel like a completion or a success. Yes, since my 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.

What was

Yes, I have been ‘unwell’ and had mobility issues for over 6 years; there have been peaks and troughs, and boom and bust periods (extended periods). Despite my pain, gait and walking complications, I have had periods when I could still do the things I love without too much planning or effect (the need to rest).

Yes, I walked with a limp, was in constant pain, and struggled with moderate exercise. Still, it didn’t seem to impact family holidays, as the planning I put in place was enough to ‘pretend’ all was ok, and the pain was tolerable to push a little more.

Yes, this was a complicated relationship with my disability and pain. However, this enabled me to do the things I loved. For example, our weekend walks were painful, but the company was great, and my mind thanked me for the exercise, conversation and fresh air.

My work life was somewhat ‘normal’ as I was in senior management and mainly in an office or car. Only those I trusted or who were close to me saw the leg tremors and significant fatigue in the afternoon and evenings.

I wasn’t embarrassed, I just wanted to live in make-believe that my disability didn’t affect my everyday.

I knew that it was likely that I was on a two-year cycle and I was waiting for the crash. A return to rehabilitation. When I say waiting I mean that I: push hard to cram in memories, experiences, career goals, study achievements, advocacy, and simply quality time with my wife and family.

In my mind, and simple logic, the cost reward always was worth it.

Previous Scars

a yellow pencil in between the pages of a notebook
Photo by DS stories on Pexels.com

This week I submitted my NDIS access request.

I still have war wounds from my last request approx. 4-5 years ago, applying for my daughter. Having to constantly share her most painful experiences in a clinical and formulaic manner.

Our first go at applying for the NDIS only achieved funding for approximately 1/3 of her therapy needs with no additional supports. We gathered more evidence, challenged the NDIS, took them to arbitration and saw an increase of over $90k.

The biggest hurdle and hurt that I think scared me the most, having to argue for a young girl who was in a dark place, and the state and federal governments wouldn’t agree on who was responsible for support.

Even multiple times the NDIS encouraged and challenged us as to why my wife doesn’t quit her job and be her full-time caretaker.

I’m so nervous and anticipating I will need to open some of these wounds and start retelling my story.

Private Physio

I have continued a relationship with my personal physio, seeing him once per week. This has been extremely beneficial, but I’ve hit my private therapy limits for 2022.

Decision time, do I go to the GP and establish a care plan (Medicare partially covered allied health) or do I continue to pay the $100 out of pocket to ensure I can at least function somewhat during this phase of unknowing.

NDIS Application

So I’ve submitted my NDIS access request form. The NDIS has 21 days to respond, but that response could be a no, a not yet, or a meeting to talk about my support needs, the waiting is hard.

Life goes on

While this all bubbles away in the background, work continues, we are building a house and planning a holiday to visit our oldest daughter in Adelaide.

The new normal is hard, and the additional pressure of what’s next, what’s the long-term plan, will I get better, will I get worse plays with my mind.

So for now we continue to move forward, even if it’s on crutches and slowly.

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 years of notes talking to my pain, leg tremors, weird unexplained symptoms. The work is trying to tell the same story. With FND this is hard to do, and symptoms are not predictable, and can change. While I was forced to focus on the documenting the hard truth, Disability and a FND diagnosis that I have been trying to hide from. It has been confronting. Needing to ask family members to open up about their personal impact, and for me, reflecting on the cannot.

this gif talks to the struggles I've had this week. It's hard having a disability, FND.

Telling a story about your own DISability, I have found confronting and invasive. Telling this story has taken away from the things I do well and forced the focus on my deficits. When mentoring and developing leaders, I spend very little time on a person’s deficits. Instead, focusing on championing and building upon their strengths. My expertise and skills for the past 22 years have been in supporting and advocating for people with disability. I am now focused on introspectively analysing my difference. 

Disability advocacy for others, not for me

I don’t like looking after me. This is evident with my fluctuating weight, clothes choice (simple can’t be arsed.) I tend to pass on my personal hobbies (music mainly) to ensure I’m available for others. Not to sound saintly, I have found ways for me that don’t tend to bite into family time. These include a whisky at 8pm. Listening to audiobook when driving. I crank up the music when I have time to myself in the office.

Looking after me has always felt selfish, too hard, and not important. So instead, I’ve become an expert somewhat in advocating for my daughter. Jenna is autistic, and we have needed to navigate a similar journey of evidencing disability and functional capacity etc. for her these past nine years (and still do). Upon reflection, I’m learning, although painful, when I see my daughter hurting, unwell and at times angry at people’s response to her ‘difference.’ There’s still a disconnect. I am somewhat removed when advocating for others, whether that be a family member or supporting people as a career, I can seen the fix, the missing piece that will help, the listening ear, the written response etc. However; when the spotlight is turned on you, I have learnt there is nowhere to hide.

It’s hard to bring it back to me

All the games and pretending, the denial;

  • It’s only a little sore
  • I’ll be better tomorrow
  • Pushing away support saying ‘I’m okay’
  • The hopes that it’s only temporary
  • I don’t need to use aides to help me walk at home

Are zero when you are falling over multiple times per day when a therapist states in writing that this may be my new baseline, that my FND is indeed impacting me lifelong. I gave myself three months to be somewhat well again. I am in month three, still in activity therapy, living in denial that I will get better. When I look back that the past 7 years, I don’t see a time I was symptom free.

I have had times that I felt less symptoms, times I was having a good day. Acknowledging I still have trouble to accept this diagnosis, and it’s been seven years now. I reflected on my ‘good days’ as my normal. Rather that reflecting on the days afterwards that I needed to rest, or had a spike in pain. Forgetting my pain during an extended walk. I refused to acknowledge is my body telling me to stop. I had to learn this is not normal muscle fatigue, and I just need to build endurance.

Yes these comments hurt

So Much reflection these past two months, learning about myself, my diagnosis, and what I can, should and should not do.

My daughter wrote a personal impact statement this week, this wrecked me;

‘All of this in turn, has caused mental, physical and emotional strain onto the family. We are unable to do a lot of the tasks we used to (long weekly bushwalks, going to the beach, etc.) as it has become too much of a task. The family dynamic has become askew with children supporting the parents. 2 out of 4 of the children seek psychological support to aid in getting through the anxieties and stresses of daily life most children wouldn’t have to deal with. Having our dad being funded by the NDIS would relieve a lot of the stressors in not only dads life but our lives too.’

Then this one from one of my therapist.

‘In my professional opinion, Jeramy .. has a condition that is likely to reduce his functional capacity permanently and substantially in a number of areas including social, physical and/or economic participation. Jeramy .. is likely to permanently require assistance … to effectively manage the impacts of his condition.’

What’s the cause of my FND

Due to the nature of FND, symptoms are incredibly varied. Also varied is the root cause of the disorder. For me, a workplace incident over 22 years ago. This lead to chronic pain, has been the ‘the reason’ I have developed FND. Unfortunately for me, as I get older, the disorder has developed. However, as we were evidencing my claim for disability support, we found many weird symptoms, that have been with me for years. It was not something we wanted to celebrate, but it was an eye-opener for me. It’s not a sudden onset of a disability. It is a steady decline over many years that has led me to reach out and ask for ongoing support.

I have also struggled with the assumptions people have made about FND. My diagnosis is purely pain related. I don’t thankfully have a traumatic event or trigger and have been blessed despite the considerable family history of stable mental health. Note that I do have bad days or situational stressors and must reflect on how to rest. However, this is not the ‘trigger’ for my FND. I live in a high-stress environment, both personally and in the work environment. There is always a constant assumption is my legs don’t work because of an event that occurred during the week. Or another hypothesis is that I am not coping emotionally this week, as I made an error in judgment. In most cases, situational stress, work stress etc., are not a trigger for me. In short it’s my inability to stop, rest, recover and respond to my pain.

As my family has told me for years, I need to learn to listen to my body, respond when it needs rest, and react when I am in pain. Whether stretching, rest, gentle exercise, physical therapy, or therapeutic intervention. I need to make it work for me and understand that it’s lifelong, and I have the chance to have a better, more comfortable life if I respond and act on the messages my body is telling me.