When Life Gives You Lemons.

It’s been a rough two weeks 🥹

Since Kathryn and I were married nearly 24 years ago, life has had challenges. Four kids before we were both 27 years old, an interstate move, significant financial loss, and multiple personal and career firsts and failures while dealing with our childhood trauma. Trying to navigate what our natural supports needed to look like for our growing Family. It felt like we lived a nomadic lifestyle searching for the right fit for our tribe, and just when we thought we had the perfect solution or life path, plans changed, or another obstacle hit the Family. This caused a considerable pause, a hard stop, and tough decisions were needed.

Balancing ‘normal’ family life, work, and the day-to-day hiccups we call life together has always been challenging. So adding a functional neurological condition, compounded with chronic pain, was not a welcomed bedfellow. While working through my new normal, we have needed to concurrently navigate some significant medical concerns with one of my daughters. Jenna is Autistic, making planning and processing important life events difficult. It’s hard for her to go outside most days, as she needs to preplan and have significant scaffolding in place to successfully go outside. So when you add a significant health scare, plan an operation, and numerous unplanned medical appointments, it’s too much.

So while I’ve been navigating life in the slow lane, we as a family have also been navigating an upcoming surgery for our Princess (more stories about her autism journey).

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A little bit of positivity

Family Focused

Our philosophy as a family is to focus on and celebrate the wins, even if they are small. I am not suggesting we get this right all the time, but it’s an intentional approach to value the person. Not focusing on the situation (i.e. the problem), which can sometimes be out of control, and our first instinct. We are looking beyond the chaos, stress, and busyness of the 24 hours and choosing to be grateful for the 5 min win within the mess.

An example of the chaos this week. We attended medical appointments at three different hospitals on Monday. Wednesday, we had two medical appointments with two separate kids simultaneously and a back-to-back medical appointment Friday afternoon. By week’s end, collectively, we would have attended 12 medical appointments as a family of 4 (hopefully, my older two have had a better week 😉.)While maintaining my rehabilitation commitments, juggling full-time work, and trying to have a sense of normalcy at home.

positive, medical appointment, family, support, working together, the little things
It’s hard to celebrate the small, but much more manageable than stressing over the big.

It’s been hard

Personally, I’m attending 4 x physical therapy sessions per week (physio & hydro), i.e. twice per week for two hours, and attempting to work from the office 1-2 days per week. Fatigue is still a struggle, and I’m finding it difficult. By 3pm, I feel like I need a nap. I have become accustomed to an extended bath after dinner to soothe the aching body, as even though I have slowed, it’s telling me it’s too much. I am very much aware I am not yet well.

My wife says slow down !

I am used to the persistent ‘nag’ (please read concerned and caring wife.) The phrase ‘please slow down’ is stated numerous times per day. I’ve built a career and a parenting style that lives on 100%, always on. I am the invincible dad. The workaholic that somehow always excels. To be honest, I have needed to get real with myself. That is to say that I can no longer be all and do all for everyone. I need to learn to connect, help, serve and lead, understanding that balance and acknowledgment of disability are factored in. Currently, this is not comfortable; it makes me feel broken.

Reflecting on supervision with my manager, his advice was similar. I needed to learn to say no and let down some people. I have wrestled with this advice. As a person who naturally gives, servant leadership and lifting others up while doing the grind and grunt work in the shadows is my comfort zone. Slowing is really hard. I am getting better, but just when I find space, there is an emergency at work. I carve out more space, and there is a crisis with the kids. Soothe this, we need to drop everything for emergency scans and tests on another child. It’s exhausting; I took my first sick day this year on Monday to give the family the space to understand the now, the next steps, and the how.

My pain specialist says pace yourself !

I don’t know how to do this; I even do rehab at 100%, walking away and working up a sweat like I would a gym session. I work hard at being well. However, I am learning that my new standard can not be like the past. I need to understand what balance means to me. Yes this affects my family and work, but most importantly I need to listen to what my body needs for sustained recovery. We have a good plan, but it’s a complex plan for someone who runs at 100%. It’s going to take time, and recovery will be slow (and possibly not complete.)

The rehab hospital are saying it’s ok, but it will take time!

I feel guilty that I’m letting everyone down. If I were asked what my love language was, it would be undoubtedly ‘Acts of Service’. I love helping and serving my family, work staff, and workplace. Service is what motivates me to do more, what makes me hungry to keep moving forward, and what I thought my identity was bound in.

It will be a slow burn and will take time; I will need to learn to receive help, and service from my family, work colleagues, and others. I find this the most challenging element of my disability/illness to understand and come to terms with.

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It’s real

I don’t like asking for help.

Help is a swear word. Help, that means me doing nothing is worse. A personal struggle is having someone put a load of washing on. Do I need to leave the dishes that little bit longer etc.? Struggling this week, my staff carried my iPad & coffee to the conference rooms. I needed help to buy a coffee; Embarrassed walking into the office exhausted. After walking to a meeting, I tried to hide the need to gain composure myself.

Losing your independence is really hard; it’s humbling.

Splitting work, family, medical and my time is bloody hard.

Family is always first for me. I made the choice to take time off to prioritise my daughter. Yes, it’s an easy decision; but it’s one that we haven’t been required to do for a while. In previous hospitalisations and medical events, I was the strong one; I could juggle the daily grind. I didn’t need this much brain space to put one foot in front of the other. It’s no longer a quick trip to the doctor, a specialist appointment, advocacy etc. If I need to attend one event for my family, I must modify my work and schedule time for recovery. This concept is foreign to me, and I am honestly finding it hard to adjust.

Yes I’m tired. But, through the tiredness I am determined to find long-term balance, find peace in the difficult days and continue celebrating the small wins in the shitty days.

4 Comments

  1. Thanks for sharing your journey Jeramy! I enjoyed the read. I hope the blogging is a healing process in itself. Remember, it’s ok to ask for help and the nagging wife sounds like a very good egg 😉

    1. Thank you, Dani, it is therapeutic for me, and hearing it’s helping others with similar situations to me. Yes, my wife is definitely a good egg, I would be lost without her. I needed to learn to be ok to ask for help, thanks for the reminder.

  2. We always need to listen to our body’s alarm signals. Sometimes it’s hard to stop and try to listen something that we wouldn’t like to hear. Our body is a fantastic machine but when gives you alarm signals it’s time to stop and listen. I’ve learnt this task during my FND journey and I can tell you that it’s the best attitude to embrace. So many times I underestimated those signals but when I was diagnosed with FND I just realized that my body was overwhelmed. I’ve started recntly a new couselling experience and during the last couple of sections, my couseller made me understand that all my past life history has contributed to my illness. Of course that wasn’t the cause but it strongly related to my symptoms. It was hard to admit this but at the end when I accepted it, it was even better to accept my actual condition. I’m always up for any sort of relaxation tecniques and I’ve started an art therapy section with a friend of mine and also a sport section (boccia). These things are really helping me to get some time for myself and get on despite everything.

  3. Thank you for your comment, Luca. I agree self-realisation is key and understanding the messages our body is giving. Definitely, something I’m not good at, and have a long way to learn. I am encouraged by your discovery and the benefits it has had for you.

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