Tag Archives: Hope

A Day in Rehab

Well, it’s day 19 in hospital.

I thought I would give you a rundown of a typical day.

Wake at 6:00am, dual reason 1. Need to Pee, 2. I need some pain meds. If I’m lucky, I go back to sleep for an hour, but today I had a report due. So just before 6:00 am wee, meds, got the trusty laptop out and smashed out the report. During my stellar report writing, I managed to eat breakfast, take more meds, have a quick video conference (still in my PJs and bed), and then start to get organised for my next task, hydrotherapy. So before 9:00am I had smashed out: 3 hours of work, a meeting, and reports—a productive start to my day.

Hydro Therapy

The pool is my favourite and, conversely, the most taxing part of my therapy day. The sense of weightlessness is terrific, and due to the buoyancy of the water, the pressure taken off my body is phenomenal. I can float, walk, and do exercises that are impossible for me in the gym. This provides both relief and the opportunity to build strength and stamina. However, there are consequences of going to the pool.

Simply fatigue 😴, and pain 😰 and therefore need meds 💊. After a session in the pool, I cannot walk back to my room independently and need to be supervised until the fatigue subsides (My pride doesn’t like this too much either.)

Making a meal in the Kitchen

My last stay in the hospital was about two years ago, back then I had a stubborn, independent streak. So I mostly refused occupational therapy (OT) sessions. I thought I knew how to make a cup of coffee and a sandwich and wash the dishes; I didn’t need someone to teach me. However, this time I have matured a little and accepted help. I have learnt it is not necessarily the task at hand that is important; it’s whether I can stay on my feet for the duration of the task. We have been working up from 5mins to 30mins over the past two weeks, and it’s hard. I never thought that doing one of my favourite tasks (making coffee) would fatigue me so much.

Walking – we are aiming for 300m (with a walking frame)

When I’m not in the kitchen cooking, I am walking (with my frame of cause) with the OT (not exciting walks on the beach or in a national park). I use my four-wheel walker and walk the corridor, up and back and count in metres, not KM these days. I need to aim for 300m without freaking out the OT, Physio, or a Nurse. 300m doesn’t sound far, but 300m is the distance from the hospital’s front door to the coffee shop. So my circuit with the OT from my bedroom to the front entrance is the perfect practice for my first double-shot late in over 18 days. Hopefully, next week 🤤

Physio, AKA learning to walk again

Each afternoon I head to the gym. This is 45-60mins of pain. I am pushing through the tremors and doing essential, repetitive exercises and mainly focusing on two things. 1. Conditioning and strength building, 2. I am working on resetting those signals with the brain through repetitive tasks. Honestly, they are incredibly dull exercises. For example, I am learning to stand from a chair, walk over small hurdles, walk side to side, and walk between a balancing beam. Akin to the pool, this is a taxing time for me; the focus needed to do the most mundane everyday task (think of standing and sitting in a chair.) It’s exhausting, and I am mentally and physically spent; again needing supervision and guidance back to my room for a period of recovery.

And I am still working a full day from my hospital bed/chair

And between the exercise, rest and recovery, I am working. People are asking, ‘why don’t you take leave’? ‘Are you able to work with your brain not functioning correctly?’ ‘Are you sure you don’t need to stop?’ ‘Make sure you are looking after yourself?’ ‘Do you think you need to stop working altogether?’ Honestly, I need to work; more importantly, I am capable of performing; my nervous system may not process signals correctly, which affects my mobility. However, all other facets of me are usually working. Routine is important to me; my brain needs exercise and use. From a human connection perspective, I have the opportunity to talk to people, problem solve and support and lead my team.

Every day I hold out for 3:00 pm. 3:00 pm is the start of the hospital visiting hours. 3:00 pm is also the time my wife finishes work, so I know she is heading over to see me within the hour. Spending time with my wife is the highlight of the day. At times we don’t speak much, just like at home, we sit in quiet enjoying each other’s company. It’s a two-way de-brief, I talk through my achievements and gains made from the day (or unfortunate setbacks), and I listen to Kathryn talk through to the good, the bad and the ugly of her day.

Hospital is a busy but lonely place, and I look forward to this visit every afternoon; it’s the best form of therapy and what we have done together for nearly 27years.

The last thing of significance I do is to make the long walk to the front entrance with my wife and say goodbye, a brief kiss (with a mask on, weird) and one last hug.

Yes I’m Fine

Why do I always say “Yes I’m fine; I don’t need help; I can do it myself?”

I love helping others, and I have been for as long as I can remember. Growing up in The Salvation Army, with parents and grandparents as Salvation Army Officers (Ministers of Religion), service was all I knew. I took this to a new level in my teenage years, running youth groups and bands, collecting donations on the streets, helping siblings and counselling anyone in need. It was expected; it didn’t feel busy or strange; it was our ‘normal’, it was just what we did.

But with this ingrained service attitude (note I do not think this is all bad, but there is merit in balance), accepting help is not a strength I inherited. I’ve always seen it as my job to help others, provide for my family, volunteer, lead, give more than is expected at work, to be strong enough to do it all myself, no matter the obstacle.

However, as my body began to let me down, I could not keep up with my own expectations. For my family, my willingness to provide and to serve was intense, and always at 100%. I wanted to somewhat fake it to ensure my service would not wane (hide the pain, cover up the tremors, power on).

I did have some wins.

My wife was challenging me to lower my expectations and standards. I must admit I saw this as a bad thing, and it was the headline in many of our disagreements over the years. Small things she encouraged; maybe say no to doing that extra volunteer gig (note already doing 3-4 anyways), leave the dishes in the sink and wash them later (not while people are still eating), a reminder that we don’t live in a hotel and the cleaning regime can be backed off just a little (i.e. instead of mopping and vacuum five days per week, how about we do it together on a specific day for a shorter period). That my 10-12 hour workdays 5-6 days per week are not a healthy work-life balance.

All I knew was flat out, but flat led to burnout, and physically every few years, my body totally shut down. While I understood this theoretically and encouraged others to practice balance, I had no intention to.

I pretended. I pushed. I hid the pain.

I am more of a …

  • It’s Okay
  • She’ll be right
  • No, I can do it myself
  • My pain is not that bad.
  • Yes, I can walk the extra few KMs.
  • I’m not hurting.
  • I don’t need help.
  • Yes, I’m sure I can do this.
  • Please don’t help me stand; I can do it myself.

But why?

  • I love helping my family, they are my world.
  • I love mentoring teams, they are our future leaders.
  • I love researching and gaining knowledge, whatever the topic, reason or challenge.
  • I love to be busy; the crazy, never sit still kind of busy.

I don’t like to stop.

If I reflect on the past seven years, battling with mobility issues (whatever label you want to put on it). I have been a stubborn arse. I run run run; my body collapses; I run run run; my body collapses. This has happened six times so far, with many, many near misses that I have ‘soldiered on’ despite the leg tremor, increased pain, and the addition of a walking stick.

I don’t think my busy lifestyle is the cause of my functional neurological disorder; chronic pain is. However, my unwillingness to rest, recover and pause affects my recovery; my reluctance to rest, recover, and pause extends the duration of my recovery.

I think the stinger with this current flair-up and hospital stay is that I was slowing down; I had listened and saved some tasks for another day; I took time out of my busy schedule for self-reflection and learning. I tried this impossible balance of exercise, rest, and recreation that my body needed to function. However, it still wasn’t quite right.

I needed to ask for help today. I fell in the hospital and was stuck on the floor; I was vulnerable, stuck, and embarrassed. I don’t know how to feel about this, but I do know that I need to learn to say yes, please and thank you more. Saying yes, please, and thank you more will make my life easier. More importantly, it enables my family to hold and show they care tangibly without me pushing them away.

“Life is about who is holding your hand and, I think, whose hand you commit to holding.”

― Taylor Jenkins Reid, Daisy Jones & The Six

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