Living with CIDP

Living with CIDP

 (A Sunday Project Exclusive, for the first time, Michael opens up about the health battle he's kept a secret for years in the hope it can raise awareness for others.)

“My health began to deteriorate drastically - my strength, my athleticism - was being taken away from me and I couldn’t do anything to stop it!”

I have always been an outspoken advocate of the importance of striking the right work life balance to give myself the mental resilience to absorb whatever challenges life throws in my direction. However, in recent years I have neglected my health and wasn’t honest with myself about the signs and symptoms my body was telling me.

I have been dealing with chronic ankle problems and degenerative back issues for quite some time. Initially it was just the odd cramp or pain in my joints, but over time my symptoms started to progress. First it was my thighs appearing thinner than they used to. After a while I noticed some tingling in my feet. As time passed I started to feel a little bit unbalanced whilst I was making sudden movements. Before I knew it, 2 years had flown by and what started as a creep had rapidly spiralled out of control. I now had severe muscle wastage in my legs, I had such significant leg weakness I was unable to stand properly. There were days when my legs gave way and I collapsed on the floor. I could no longer feel my feet
touching the ground as I hobbled around. On one occasion I found myself having to sit on the airport floor for hours while I waited for my legs to regain feeling and tone so I could make it out of the airport.

We continued to explore diagnostic and treatment options which produced a swathe of tests, MRI’s, nerve conduction studies, muscle biopsies to get to the core of the problem. As I lay there in scanner after scanner – a tunnel of darkness - I couldn’t believe how the one thing that I identified with as integral to my identity – my strength, my athleticism - was being taken away from me and I couldn’t do anything to stop it!

Over two years ago I was diagnosed with an autoimmune disorder called Chronic
inflammatory demyelinating polyneuropathy (CIDP) which is a neurological disorder condition that targets your body's nerves, especially the areas of the arms, hands, legs, and feet. Symptoms aren't the same for everyone but in my case, it has affected my legs and feet. 

In 2019 I had an ankle fusion operation in Sydney and began IVIG treatment (intravenous Immunoglobulin) to reduce the effect of the inflammatory condition that attacks the immune system.

IVIG treatment (intravenous Immunoglobulin) helps reduce the effect of the inflammatory conditions that attack the immune system. Besides IVIG there are other treatments with limited proven success rates such as steroid treatment, and plasma replacement therapy.

I returned home to Bali to recover with my family but no one could have predicted the impact Covid would have on the world, with border closures, and travel restrictions. 

My health began to deteriorate drastically. I was experiencing issues with my (degenerative) back and CIDP combined. I started to fall over, I couldn’t walk up the stairs, I needed to rely on my partner Michelle and the kids to lean on, and I found myself laying down in bed all day because the back pain became unbearable. 

By June 2020 I was either on crutches or using a walking stick to get around. I could no longer ride my bike because my feet were not responsive. Those that saw me thought it was a result of my ankle operation and a slow recovery. I couldn’t come to terms with telling them the truth just yet. I think that I was in such denial to myself as to how severe things had become, I couldn’t admit to others what was happening to me. I just wasn’t mentally ready to face reality. A good example of how far I had buried my head in the sand was - as I watched my legs waste away I was simultaneously planning an ocean swim around the entire
circumference of the island of Bali to raise money for charity. Yet, at home I couldn’t get out of bed without help.

I knew I had to get back to Sydney as soon as possible for more treatment. We tried to buy some time with a treatment of steroids but if anything that gave me false hope and the rebound side effects made my symptoms much worse, both physically and emotionally. I had vision loss, gained weight, my moods were intense and I was starting to get rigors (when your body can’t control its temperature and you go into shivers) frequently. I knew I needed to return to Australia for more definitive treatment, but my family was in Bali. Covid had taken over the world and with three kids under 15 - if I left I didn’t know when I would be
able to get back.

Ultimately, I made the tough decision to return to Australia for an immediate back operation to decompress the nerves in my spine and resume the IVIG treatment.
The decision to come back too was hard. I wasn’t sure how long I would be away from my kids. They had witnessed my mobility deteriorate and understood I needed help in Australia but we were all scared of the uncertainty of what the next few months would bring and when we would see each other again. 

In July I underwent back surgery and resumed an aggressive course of IVIG. But it didn’t end there – because of the loss in skin sensation I had a skin tear and developed cellulitis.

The infection spread up my leg and wasn’t responding to the antibiotics. My ankle and foot on my good side turned purple/blue and went freezing cold. The doctors thought at first it could be a blood clot but then decided it was probably a weird autonomic reaction. I started to get headaches and fevers. After multiple Covid tests they realised that I had increased pressure behind my eye. It felt like my body was literally falling apart. Bouncing in and out of the emergency department at RPAH were some of my darkest and most challenging days.

As part of this entire process, the trauma of how different my lifestyle had become was immense . Both of my ankles needed a boot to prevent them from dragging on the floor. I couldn’t go outside without a walking stick. I had to plan precisely how far I’d have to walk, how many stairs there were, and not to mention how self-conscious I had become. There was only so long I could use my back operation as an excuse for my visibly changing frame. 

I also had to accept that I may never get back to normal mobility ever again and my usual fitness and exercise regime (weights, swimming, HIIT etc.) was currently impossible to imagine. I needed help. That was hard for me to admit. I began talking to a counselor and opening up to my family about what was happening. I was actually experiencing some kind of grieving process and trying to come to terms with my new reality whatever that was going to be. 

How am I dealing with this?

As long as I can remember and not only during my sporting career but post retirement from professional swimming – I was an athlete. My physicality was a major part of my identity. It’s how I empowered myself mentally. I would use any opportunity to push myself to the extremes challenging my body to do the unachievable. Whether it was in the pool, in the gym, the surf or an adventure race, I pushed myself to the absolute limit to test my mental toughness. On most occasions I was able to succeed. Success drove me each time to push
even harder the next time. Previously I relied on my strength and athleticism to drive my mental strength, this had now been switched on its head. The idea that I now needed mindfulness and mental strength to overcome my physical limitations was as confronting a concept that I have ever faced!

Physically, I’ve lost almost all my calves and muscle tone in my legs. I’ve been fitted with special orthotics and a couple of different braces depending on the activity to help my foot drop. I'm also having frequent massages to keep the circulation moving in my legs. The process of putting all those additional things on gets tiresome. My youngest keeps asking me why I’m wearing shoes on the beach.

After meeting with several doctors and specialists it was obvious that my diet required attention and I began a process of an elimination diet (carnivore diet) which definitely had a positive impact. I lost weight and had more energy. I now try to have a balanced diet but mostly eat meat. I'm aware this might not work for everyone but it definitely worked for me. 

Mentally I have tried to stay positive but there are times my motivation and beliefs is severely tested. I can no longer do the things I love and enjoy. My body is not the same. I have constant stiffness and limited leg functionality. I am not used to having to pull myself up off the tarmac so regularly. This illness has pushed me to corners of my limits. I'm not used to having such low energy levels but I have found staying active is key. Thankfully swimming is something I can still do.

Most of my training is now mental visualisation. I used to enjoy pushing myself to the extremes. I liked being competitive in sport, business and in life. I think I perceived myself to my kids and nephews as some kind of a superhero
but realised that all they wanted was to have their dad back to shoot hoops, dance and surf in the ocean. The kids are quite aware of my current situation especially when we go outside down the street and they take turns for me to lean on them for balance. We make light of it together but I know it’s taking a toll on them too. They are worried about me. My job is to protect them, not for them to worry about me.

For quite some time I didn’t want to mention the CIDP to anyone, especially my kids and my close friends. The diagnosis was still pretty new and I had no idea of the trajectory. Was this going to improve over time? Would I get back to baseline? Was I going to be physically debilitated forever? Or worse – am I going to deteriorate further?

When I finally opened up and told my kids they surprised me with their mature approach, empathy, and sensitivity toward the issue. I began to open up to friends and I was overwhelmed by the level of support from everyone who would continually check up on me.

It has been extremely difficult for my family, especially my parents and my sister to witness the deterioration from a distance (in Melbourne) without the ability to assist due to Covid, but this past year has certainly put a lot of things into perspective and reinforced to me how important family is regardless of what is taking place. In an unexpected way the circumstances of the past 2 years have brought our family unit much closer together.

I’m also extremely lucky to have a very supportive partner. Michelle has been there with me every step of this journey. I can only imagine how challenging it was for her. Leaving her own family, friends, and home behind during Covid to be with me and the kids in Bali. I couldn’t have got through all this without her either. 

What's next?

It is with great relief and hope that the covid travel restrictions have finally eased as I was finding myself losing motivation again, falling into bad self care habits which was again affecting the ones around me and losing the glimmer of hope of a significant recovery. I can now follow a protocol as prescribed by Dr Judith Spies and the RPA team to enable me to continue to show my loved one that I am fully committed to my improvement and so that I can continue my professional commitments.

I have started to see and feel some improvement in my everyday function and mobility. It is an ongoing and relentless process to try and manage this current condition with all my previous injuries.

I continue to travel back and forth for treatments in Australia with regular check ups and tests with my medical team to ensure the IVIG treatments are effective or at least stabilising my condition.

I wanted to share my story in hope that more research and awareness can be directed towards CIDP.  It’s hard accepting that my identity will no longer be reliant on my athletic ability. I now need to find a new mindset and mental toughness to allow me to overcome and accept this new challenge. Sharing my journey is another part of this healing process and I would hope that it brings awareness to CIDP and resonates with people who may be going through similar challenges.

If you would like to know more about CIDP please visit The GBS Foundation