Life is turned upside down when chronic illness comes along

Ahead of International Day of Disability on 3 December, I'm sharing lessons learned as the partner of someone living with an acquired disability...

Long-term disability came into our home with just a few warning signs last year. My husband and I went for to Canberra for a cycling holiday in May and he complained of a sore ear while we were riding the excellent cycleways. We thought it was just the cold.

We took the long way home via the south coast of NSW and by the time we completed the descent to Batemans Bay via the Kings Highway, he could hardly hear and had quite severe earache. When we got home, the GP treated him with two courses of antibiotics that didn’t help. Over the next few weeks his tinnitus was louder than usual and he experienced a ‘full’ sensation in his ear, almost as if it was filled with water after swimming.

One month later, he couldn’t get out of bed without falling over due to intense vertigo or even sometimes move his head without throwing up. Imagine being on the fastest spinning cups at a fun fair, except this is happening for you while you’re standing still. While he had just started a new role at work, he was signed off work for three months by a neurologist whom we’d been referred to just in time by his Ear, Nose and Throat specialist. During that time he worked most days, however some days he could work for an hour, some days for an afternoon or some days not at all.?

The diagnosis was Meniere’s Disease, a curious disorder of the inner ear that causes hearing and balance problems that has no known cause and no cure yet. You can only manage symptoms, with the prospect of full hearing and balance loss within the next five to twenty years. He has always joked that he wants to be a cyborg, now he has a Cochlear implant in his future.

Life changed overnight for us.

The testing and treatments were quite brutal. He was given various scripts for drugs to prevent but also help during episodes, including medications which allowed him to disassociate from the symptoms during the very worst of the Meniere’s attacks. This for a person who reluctantly takes a Panadol for a headache.

The neurologist sent him home with a ‘dizzy cam’ – a pair of blacked out swimming goggles so he could record the nystagmus, the rapid and involuntary eye flickering that came with the attacks. His case was considered by his neurologist specialising in Menieres to be one of the three patients she was most concerned about that year.

He had needles put through his ear drums. That is just as bad as it sounds. In one case to measure the ear function and see if the disease was on both sides (thankfully only the left). Another instance involved cortisone being injected into the ear as a treatment to see if that would help. Another time they delivered cold and warm water into his ears to see how it would impact his balance; eventually requiring an injection of ice water to get a reading. He was given a specialist contrast MRI of the labyrinth of the ear that took more than five hours to complete.

?We rolled with the punches, bewildered by the speed at which it was all happening but supported by excellent medical professionals.

Hold on, pain ends (the acronym for hope)

I have been an accessibility ally for well over a decade now but being taken prisoner by something you have no control over in your daily life is a different story. Apart from the scary immersion into all types of medical tests and terminology, the most frightening thing for me at the time was that we felt way too young to face into a future where achieving many of our dreams vanished and our lives would become small.

Leaving home or travel is not possible when you can only get from the bed to the bathroom by crawling on the floor. One afternoon we drove eight kilometres from home for a walk and some fresh air and by the time we got back, he had to crawl from the garage to the bedroom as another vertigo attack hit. Our dreams of going to Europe again seemed impossible.

The mental health aspect of this was also significant. Less than a decade ago, people were told to get on with it. The ENT provided us with a brochure about the anxiety and depression aspects at our first meeting which was the same length as the brochure describing the disease itself.

It took over half a year but Michael has recovered through the help of medication, following a low salt diet and avoiding triggers such as lack of sleep and stress (where possible because… life). He still has odd ‘spells’, but in general he is doing so much better. We are starting to understand the triggers. Not the airplane itself as we’d expected when we flew to Queensland for a long weekend, but the busy airport walkways. The corrugations on the Stockton sand dunes we walked on over a long weekend made him feel dizzy.

His hearing is quite impaired and the tinnitus can be loud at times, so we’re starting to be proactive and selective about where we socialise so that he doesn’t feel like he’s not part of the conversation. Restaurants are also chosen for the ability to take salt out of dishes, which limits options greatly. I also have to continuously remember not to talk to him from another room, a really bad habit I have!

Support from many places and people

Here are some of the things we learned as we have adjusted to a new normal:

1.???? Michael had just transitioned into a new role in his company a few weeks prior to the worst of the attacks starting and his new leader was magnificent. For that we both have an immense sense of gratitude. How many managers would say “do what you need to do" when an employee tells them they can’t commit to any deliverables or turn up for meetings? This took pressure off so he didn’t have to feel guilty for not delivering and only focus on his recovery. Some days he worked for an hour then went to bed, others he could work a whole day and then have to take the next day off. He has now given that commitment back in spades to his leader and team.

2.???? Flexible working is amazing and work is truly what you do and achieve, not where you do it from. I had to drive him to many appointments or go and collect medications, so I worked out of specialist doctor’s offices and hospital carparks. This included being on video calls with clients and colleagues. I had many balls up in the air as I had multiple projects in train but did not drop one, even though I was working everywhere and at all kinds of odd hours. That’s why the continuing insistence from some companies that people come into offices to be productive confounds me.

3.???? Michael is working from home and back in the office two days a week, delivering in his role. As there is the risk that he can get a Meniere’s attack while at work, his company has ensured he has card access to the sick bays and the security team is briefed that should he be seen stumbling around that he is not drunk. He has joined the company’s disability employee action group and is enjoying being part of that employee community.

4.???? So many people in our personal networks checked in regularly and still do as they know this is not going away for us anytime soon. Just sending a ‘how are you going?’, ‘how’s Michael doing’ message or offer to help in a myriad of ways makes such a huge difference. It changed how I turn up for others who are going through a difficult time. Nobody needed to be a medical expert, they just needed to care and reach out.

5.???? Normal is beautiful. We are not taking anything for granted including the more mundane moments of life as they are the most precious sometimes. The attacks will return again and in the meantime we are cherishing everything we thought we’d lost forever.? We did our first flight to the Sunshine Coast earlier this year to test how his ears went with a pressure change (fine, yay) and it was wonderful to be able to travel again. I’ve designed a ‘dream board’ for us to write our bucket list travel destinations on and make sure we work to get there together while we can.

6.???? We attended a Sydney Meniere’s support group webinar recently and many people shared their stories of living with this disease. It impacts everything. Your mental health, your relationships, your dreams. We don’t always know what’s going on for other people and if we can be empathetic to others it makes a huge difference. Recently a colleague in Michael’s office found out about his Meniere’s Disease and admitted that sometimes when they pass his desk in the mornings that he doesn’t say hello back and now they know that it’s because he can’t hear well on that side, not that he’s ignoring him.

7.???? We count our blessings every day, even on the worst days. We were grateful for the incredible medical team of his ENT and also the amazing neurologist who has chosen to specialise in this niche field. For the medications and the diagnostic technology. We laughed whenever we could and used humour as a good dose of medicine. When he couldn’t move or see a screen, he had a whole range of his favourite BBC comedy podcasts lined up so he could lie in bed and play those. He still recounts the day of the cortisone injection through the ear drum as when he felt most supported as I started telling jokes while he was lying there unable to move or swallow. Even a bad sense of humour can be the best medicine!

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