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.
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.
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.