Category Archives: personal

yellow lemon fruit on green table

When Life Gives You Lemons.

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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).

positive, medical appointment, family, support, working together

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.

positive, medical appointment, family, support, working together, guilt
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.

The Story So Far

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Often I refer to myself as someone in their 40s with a body of a 75year old. Since my 20s, I’ve been in pain and had some form of treatment to remedy it, with only small periods of respite over the past 22 years.

HOW IT BEGAN

It all started as an AIN in a nursing home; I was showering someone, and unfortunately, they passed away; I went against the manual handling policy, and unknowing they had passed, tried to catch them to prevent injury/fall. My back injury was my first interaction with a multidisciplinary team. I spent 6months off work working on my recovery (without the knowledge and experience I have now was taken advantage of by my employer). As a newly married couple, we survived on weetbix and noodles (and the occasional horse poo shovelling job for a spare $20.) Weekly Physiotherapy, biweekly hydrotherapy, and a personal trainer three times a week at a gym.

This time I made good progress, lost a heap of weight, and, although still in pain, lived a relatively busy and normal life (we brought two houses, had four kids, ran a church, started studying & worked various jobs etc.).

DIAGNOSIS AFTER DIAGNOSIS

It wasn’t long after my youngest son was born that things started going downhill for me physically, with a comical but harrowing experience of dislocating my hip standing up off the toilet. This event started the endless cycle of doctors trying to explain the ‘why’; that was in 2008.

SEVEN YEARS OF UNKNOWN

I’ve had so many diagnoses over the years that it’s laughable. Muscle strain, muscle spasms, cramping, bursitis, partial dislocations of the hip, ataxia of unknown origin, arthritis (at various times noted in the hips, knees, and back), deferred pain, mainly in the stomach (which led to so many stomach-related investigations), chronic pain, lower back pain, slipped disc, disc bulges, neurological disorders (functional gait disorder, functional neurological disorder, primary orthostatic tremor) and many more that I can’t remember.

I have had numerous MRIs, phycological assessments, CT scans, ultrasounds, nerve conduction studies, countless blood tests, neurologist appointments, radio-frequency ablation (RFA) (over three years, was getting this treatment three times per year), installation of a spinal cord stimulator in 2021, appointments with social and mental health workers, physiotherapy, occupational therapy, massage, and natural therapies (and some that have slipped my mind). None of these treatments provided sustained absolute relief, nor pinpoints and treated all my symptoms, nor produced a holistic treatment plan or honestly extended comfort.

I’ve been ‘unwell’ in my current state since 2015/16, so seven years of not understanding the ‘WHY’ about my chronic pain, tremors, and functional neurological disorder. Therefore I needed to focus on one avenue to ensure some kind of normality for myself and my family. I’ve focused on pain management for the past seven years, getting my first pain specialist in 2016. My logic is that with effective pain management, I can live a somewhat normal life, continue working and mask whatever is going on with painkillers. Trust me; I needed to try them all and constantly titrate the dosage as my body became tolerant. Although pain killers provide relief, they have side effects (brain fog, tiredness, and weight gain, to name a few); addiction and dependency are problems, too, with some drugs worse than others. I have gone through horrendous withdrawals that have taken me months to overcome (night terrors, night sweats, fatigue.) It’s been a constant juggle, figuring out the drug with the most negligible side effects but will target my pain effectively.

As my symptoms look like I am drunk, I have been ridiculed, the butt of numerous jokes, and the rumour mill has been rampant about why my body movements were not ‘normal.’ 

JUDGING MY SYMPTOMS

These uncontrolled body movements have caused some family members to stop talking to me because they don’t condone my drunken behaviour. Some family members believe that I have significant mental health episodes and not coping at work or any other life events that are occurring at this time (having a busy lifestyle, four children, a child with a disability, and the need to move a lot for work, travelling for work so on and on.) Although I acknowledge that friendly banter and a laugh have been good therapy, I refer to my orthostatic tremors and unusual gait as the character from star wars Jar Jar Binks. There is a fine line between a friendly joke and a hurtful unfiltered uninformed, and hurtful remark.

FUNCTIONAL NEUROLOGICAL DISORDER (FND)

For at least six years, I had been skirting around a functional neurological (FND) diagnosis. FND studies have shown there can be many triggering factors for the onset of FND, for example, a physical injury, infectious illness, a degeneration of mental health, a pain flair-up or migraines. Any of these illnesses can cause someone’s first experience of FND symptoms, and once you have your first episodes, you likely have it for life. Historically functional neurological disorders were not understood in the clinical and academic world. Until recently, this disorder is thought to only result from the uncontrolled or a manifestation of a mental health condition. FND has traditionally been viewed as an entirely psychological disorder, a theory that repressed psychological stress or trauma gets ‘converted’ into a physical symptom; therefore, FND is referenced in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) as a phycological disorder. In recent years, FND has only started to be recognised as a stand-alone neurological condition. 

Therefore I have unfortunately needed to be tested, questioned, and uncomfortably labelled as someone with a complex mental health disorder. I would not be ashamed if that were correct; however, treatment is significantly different if you treat unmanaged chronic pain as a mental health condition. Making the problem worse, many of my medications are used for mental health conditions and epilepsy. Thus when presenting to the hospital, or a new specialist, I need to reexplain my triggers and the root cause of FND. I have been using these medications for nearly seven years and constantly need to explain why I am using this medication for an alternative reason. Note: With the realisation that FND is a neurological disorder that affects the nervous system (although still not sure why), the medication is not questioned as often these days.

The other issue with FND is that symptoms can come and go; this is a relief as I get some much-needed respite. But come on quickly and without warning at other times, and when they do, I need to retell my story and jump through all the hoops before I get the correct treatment. 

WHERE I AM AT NOW

So currently, I am sitting in a hospital, day 12. We have a plan that will get me out of the hospital in the next few weeks and a plan that should stabilise my gait and have less reliance on mobility aides over the next 2-3months. I currently do 2-3hours of allied health supervised physical therapy per day, from the basics, of learning to get out of my bed and car safely, to strengthening exercises to stabilise my core and legs to extremely simplified brain exercises, where I am learning to walk again and retrain my brain in the correct movement patterns required to mobilise on my own safely.

‘FND, the symptoms become ‘stuck’ in a ‘pattern’ in the nervous system. That ‘pattern’ is reflected in altered brain functioning. The result is a genuine and disabling problem that the patient cannot control. Treatment aims to ‘retrain the brain’, for example, by unlearning abnormal and dysfunctional movement patterns and relearning normal movement. One way of thinking about FND is looking at it like a ‘software’ problem on a computer. The ‘hardware’ is not damaged, but there is a problem with the ‘software’, so the computer doesn’t work correctly.’ (https://rarediseases.org/rare-diseases/fnd/)

The following steps are, for me, the scary ones; for some people with FND, the symptoms don’t go away, and some people with FND will remain in a wheelchair or need mobility assistance for the remainder of their life. This is my sixth episode in seven years, resulting in hospitalisation and an extensive rehabilitation program to retrain and rewire my brain. Honestly, I am not looking forward to the eighth, and I am searching for an avenue to slow down and reduce my flare-ups. 

Although I have had considerable relief with my pain specialist (50% reduction in pain over the past 18 months) with the addition of the spinal cord stimulator, the reduction in tremors and FND symptoms has mainly been a fluke (or a side effect.) This single method treatment method (acknowledging that I still see physiotherapy at the gym and walk 10-20km per week when I am well) can not be my golden ticket, and I need to focus on holistically more elements of my treatment. 

So the current plan is to work with a social worker at the hospital, link in OT & Physio, develop a treatment plan that will be sustainable in the community, explore whether I need external support long-term (parking permits, NDIS etc.) and finally admit to myself that I need to regularly see a Neurologist as part of my regular treating team. 

I need to realise that people want to help me and that I am a time, my biggest roadblock, instilling the Aussie male persona of ‘she’ll be right.’ I have built a career in supporting and caring for others, which is a strong point at home with the family. However, I constantly fail at asking for and receiving help from those in my network.

Definitely something to ponder and a start of a new journey for me.

Jeramy

This Blog is also shared on The Mighty

https://themighty.com/topic/functional-neurological-disorder/finding-treatment-plan-after-years-functional-neurological-disorder-rare