Tag Archives: Hope

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.

The New Normal

I’ve been home for six days now.

I’m extremely ecstatic being home with my wife and kids; words can’t express the joy🥰. I haven’t seen my youngest two children for nearly five weeks. I needed to be home with them all.

I’m also grateful that my wife no longer needs to visit me each day. Don’t get me wrong, her visit was the highlight of each 30 or so days. However, her anxiety about navigating Sydney traffic was definitely not her highlight.

I’ve started building a new routine at home. I was trying to get back on the cooking roster and ‘light’ house cleaning. I went for a drive, and saw extended family; I even managed a day in the office yesterday, however, FND is a killer concerning fatigue.

Need to Pause

As an illustration, the family often finds me snoring on the couch these days; I do have a favourite seat I covet; however, this is for watching TV, chatting, and daydreaming, not sleeping. The need to rest is foreign to me; it is weird; I never slept nor felt the urge to nap. I never have day naps, which is a new normal that I don’t like.

Needing to be intentional with rests on the couch, long baths and sneaky Netflix binges to switch off is a new normal. Suddenly, FND hit me for six, and I am finding the adjustment from a hospital bed and controlled space to a more unpredictable home environment hard. I hadn’t realised that fatigue was an FND symptom, and it was the first time in 7 years navigating this diagnosis, that leg tremors and pain were present.

The predictability of therapy sessions, scheduled meals, and a solid routine gave me time to recover. This post-discharge world is a little more chaotic, but the juxtaposition is that chaos is usually my happy place, but to be frank, returning to the natural world has been challenging.

sleep, tired, sleepy. new, normal
It’s been tough to be real

My First Day

After the long weekend, I headed to the office, my first time since mid-June. It was a short day for me, 7:45 am-4:35 pm (no lunch) feeling somewhat naughty 😈 going home ‘early’. The interactions with my peers were terrific; sitting in my office chair, amazing music playing 🎶 on the speakers, reminiscing the months past. It was a good day.

nods, sleep, sleepy, new, normal
Major nods

Reality Hit Hard

My imagined return to normalcy (aka 4-5 days at the office, juggling physio sessions, and being the cook at home), is currently impossible.

This FND reality is really, really hard to process.

I am usually invincible (or at least give that impression). I’ve needed to look at my diary and say no critically. Something I can’t honestly think I’ve spoken to my staff (when talking about committing time) in my leadership journey. I’m finding this loss hard. 😩😩

Finding a new normal is not something I usually welcome, and I can feel the inner wrestle setting in, the arguments with myself to keep pushing, despite knowing the effect this will have on my recovery.

What is the Correct Balance

I don’t know…..

My doctors think I am pushing harder than others with similar FND conditions (note I am one of the youngest in the rehab rotation.) I’m convinced that I need to do more, and my family are providing that sound of reason and balance. My need to ‘work’ and keep ‘busy’ is built into my DNA and something that gives me peace, but in turn, learning to utilise my energy in different ways, learning to adjust my work schedule for when I’m at my best— and most importantly learning to say ‘NO’ and be okay with this.

Lots to learn on the FND journey, and still making progress every day.