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.
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.
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.
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.
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.
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.