It’s Been a Month

This week marks 14 weeks since my last hospital admission.

Over the past 18 months, I have averaged a hospital admission every 12-16 weeks.

So, from week 12, there are typical symptoms that creep in:

  • Increased pain
  • Limited movement 
  • Joint stiffness
  • Increased leg tremors
  • Unsteady gait 
  • More reliance on aides (wheelchair)
  • Decrease in Independence

My biggest fear, apart from falling, is long-term re-admission to the hospital and the impact that has on my family.

I know there will be a time when I must return to intensive rehab at a hospital (FND, for me, is cyclic). However, there seems to be a new normal creeping in; my FND and Chronic Pain are still very much present, but not all-consuming, just present.

I’m learning not to give my disability complete control over my day and time. I am learning that although I have a disability, this is not an excuse and should not be an excuse for not living a full life. 

I continue to try and find myself despite those obstacles. I am still not there yet, but the progress has been impressive. 

I am three months in with the NDIS (disability support), as stated in my last post, Disability Supports Starts. I’ve been enjoying and seeing (realising this is my new normal) that my life has been much slower at home. I even snuck in an Adelaide trip to visit my oldest daughter for a few weeks.

I have support four days a week, including help with cooking meals and cleaning. Allied Health & Personal Trainer support thrice weekly is making a significant difference.

For the first time, I have suitable and recommended equipment (aides) to make my days more accessible and safer and allow and promote personal independence.

I have been working with JobAccess (A Government Department/Funding) to ensure that work is safe and that I have the correct equipment for my home office and work. This means that working is more sustainable, and I experience less pain as my workstation is set up personally. 

Such simple yet profound recognition and understanding of inclusion. The safety team at work and the occupational therapist from JobAccess have set a path that my workplace is safe, accessible, and inclusive—simple modifications that profoundly impact me.

I am trying to slow my mind and give myself permission to pause, reflect, meditate (it’s hard), and be creative to find things that provide me joy, even though they may need to be different or modified due to my disability.

I am learning to be selfish in sacred areas (my family, my exercise & daily stretches, my children, reading and music, and the simplicity of doing nothing). I have found that as I reorient my perspective and be happy in myself, whether having a lousy day, celebrating a win, or being grateful, I can still do so much despite my limitations.

I can celebrate progress as a win.

I have been raised to help others and be the saviour at the cost of myself. This ‘act of service’ has impacted my work, family, and health. 

At 44 years of age, I now have to relearn how to live; be a husband and a Dad; acknowledging my disabilities and limitations but not allowing that to stop being who I am and who I need to be. 

I have had to unlearn (still trying) 44 years of brainwashing and indoctrination, leading to being a broken person and impacting myself, my health, and my mind. I was taught to keep giving, helping, fixing, and meddling. The cost of this upbringing has caused a catastrophic reset of who I am and how I define myself as a husband, father, leader, and civic member. 

Yes, I will always promote the principles of servant leadership, but not at the cost of my health, family, and life.

To my family, I am sincerely sorry. I have been selfish; I said before I needed to be selfish and reflect and control myself more. However, I was remiss that my family (my wife of 24 years and my four incredible children) are impacted due to my disability. And they, like me, need time to grieve what ‘could have been’, ‘dreams wished’, and ‘hopes smashed’. 

My family, like me, is learning what the new normal is. I underestimated the impact of that consistent cycle of my disability, return to the hospital, and constant decline; no lie, at least a quarter of our income goes to treating our disability (myself and one of my daughters) despite NDIS ( two x disability funding, my daughter being on the disability pension) the cost (at least for the past 14 years) hurts. My family has missed out and sacrificed because of the need for urgent treatment, medication, crisis care, health insurance, etc.

The fear of the what if, the fear of the what could have been, and the lack of clarity of what’s next is fucking hard for the six of us. 

But as I said, we will keep moving forward and learn to slow, build routines, and find new hobbies that allow me, my wife and my family to stay connected, have fun, and stay together despite the obstacles, and remember to be grateful for the small wins, and be thankful that we are further down the track than we have been for 18 months.

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