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.
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.)
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.
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 🤤
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 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.