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.

Visit to a specialist

I’ve been waiting for my specialist appointment since my discharge from the hospital, which was organised about 7 weeks ago. I was full of expectations. I thought this appointment was the start of ‘getting better’, finding answers, and having a professional champion in my corner.

It was not a good start to the appointment. There was no accessible parking which meant a considerable walk to the clinic. This exacerbated my symptoms, and fatigue set in. I was tired, and before I even had the opportunity to talk to the specialist, I was at my worst.

The paperwork

To continue with these difficulties, I needed to complete approximately 20 minutes worth of paperwork on entry. I struggle with handwriting. On the best of days, I limit myself (I’m messy, it hurts, and I prefer computers) due to cramping in my hands. I normally pre-empt this and prefill all information at home electronically before any specialist appointment. There was nowhere to sit comfortably, so I needed to hunch over.

Needing to hunch again exacerbated my symptoms, and the pain started to flare up.
Due to my car being over 10 min walk away, I had no opportunity to grab some pain relief (I know I should have been prepared!). I had to wait my turn. Forced to sit uncomfortably and remain somewhat positive as this might be the appointment I get some answers. Or at least an extended long-term plan.

disability parking, no parking, long walk to the specialist

It didn’t start well

The appointment was 45 mins late; I was stiff and tired. I was not in the mood to head in for my consultation. I pulled myself together, walked into the consulting room and started to tell my story. Noting this specialist saw me for the duration of my 32-day stay in the hospital and then prior similarly two years earlier. The discharge summaries I emailed earlier were not in my file. Again, my medication list was emailed as part of my referral and was unavailable (note he prescribed me all of my new medications). I needed to email to doctor during my appointment for an updated list.

All the standard questions, tests, looking at my ‘spastic’ gait (yes, that’s what the doc said). I know it’s a medical term, but I struggled after that; we have moved on from those terms I thought in the ’80s & ’90s. A walking speed test was done, and then the standard reflex test.

Apparently, I’ve got Hyperreflexia, ‘i.e. an overactive or overresponsive bodily reflexes’ in my legs. Weird that I have never heard this before. My legs have always responded quite dramatically to the reflex test, but I assumed this was ‘normal.

Your legs are spastic aren’t they

Once again, your legs are really ‘spastic’, aren’t they? Noting that, yes, in fact, this is a medical term. However, other terms now are less confronting and offensive (tremorous, neurasthenic, shaking, over-responsive, involuntary movements, your legs are showing signs of spasticity etc.)

It’s getting real

Possibly not angry with the specialist for using outdated terminology (although I would like him to try and update his vocabulary).

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. This makes me angry sometimes; sometimes, this makes me frustrated. But as we have done as a family for more than 22 years, we dust ourselves off and get up. My mantra is to keep moving forward.

Back to the story

I need to get an MRI (I hate them, truthfully, I find them claustrophobic, and I get significant anxiety.) As my mobility, mainly my ataxia gait, looks like Multiple Sclerosis (MS), he wants to ensure nothing sinister is happening with my brain and back etc.

Getting an MRI is complicated due to my spinal cord stimulator. So I need to find a particular type of machine and jump through a few more hoops before I find a clinic that will do one.

We finished the appointment with a prescription for another medication (my 6th addition in the past two months). Talking through the drug side effects (to help reduce muscle stiffness and assist with mobility). It will take 12 weeks to taper the medication to the correct dose. I need to watch for numerous symptoms (mostly fatigue and mental health), and if exhibiting them self taper down the drug. I need to wait until I see the doctor again in 3 months. (a little nervous about this one)

So you don’t have depression or stress? That’s unusual, are you sure?

As I stated at the beginning of my blog, I needed to complete copious amounts of paperwork while waiting for my appointment. Part of these tests was to score pain but mainly tests to capture my current mental state and stress levels.

The doctor looked at me, puzzled, and said, you don’t have a mental health issue. I don’t understand; what’s your trigger for FND?

We spent some time talking about my initial back injury. The impact this had, and how this incident started 22 years of chronic pain. He pushed a few times more, and then, ok, So the trigger is pain? I said yes. I continued and informed him that, in fact, approx. 20% of FND patients’ root cause is not trauma or mental health related. I am in the 20%; yes makes it a little more complicated to treat, but that’s me.

I left with more questions and no formal diagnosis on paper (I had been asking for a letter from my specialist to confirm disability). More tests to complete, oh and $500 poorer.

On a positive note, we have a plan for at least the next three months. So let’s get stuck and tick those actions off, one at a time.