Tag Archives: Fine

The New Normal

2 Replies

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.

The Story So Far

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.

sleep, tired, sleepy. new, normal
It’s been tough to be real

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.

nods, sleep, sleepy, new, normal
Major nods

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.

Yes I’m Fine

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.

Yes I’m Fine

5 Replies

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

This Blog is also shared on The Mighty

https://themighty.com/topic/functional-neurological-disorder/ask-for-help-rare