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Six years have passed since I’ve been living with Ménière’s disease. A condition that has caused me to lose a significant part of my freedom, hearing, and independence. But it has also taught me a great deal about my body. And I’m still an entrepreneur. In this article, I’ll tell you about how I’m coping with the disease, my medicinal piercings, and special glasses, and what the prospects are.
What is Ménière’s disease?
For those who haven’t heard about this condition before, let me briefly explain what it entails.
Ménière’s disease affects the vestibular system. I often compare it to migraines because many people are familiar with them. You experience attacks with severe pain in your body and can’t tolerate light or sound during such an attack. The difference with migraines is that an attack doesn’t start with a headache but with dizziness. This dizziness can become very intense within a few minutes. It’s difficult to predict how long it will last and when it will start. An attack can last from half a minute to hours or even days. The cause lies in the vestibular system where fluids mix. Normally, these remain separate. When they mix, an attack occurs.
The severe dizziness can cause headaches and vomiting, just like during a migraine attack. Unlike migraines, Ménière’s disease also involves hearing loss. After an attack, your hearing often deteriorates, which doesn’t recover afterwards. Some people eventually become deaf because of this.
Fortunately, this disease resolves on its own in most people. Research has shown that 60% of patients no longer experience symptoms after 2 years. In 80% of cases, the disease subsides within 8 years. But for 20% of people, the disease is permanent. Several people in my family have had this disease. For some, it disappeared after a few years, but for others, this wasn’t the case. They lived with the disease until their death, sometimes for as long as 30 years.
Being hard of hearing
The disease can affect one or both ears. Fortunately, I only have it in my right ear. Because I’ve been living with it for quite a few years now, I’ve become hard of hearing. This has been a very gradual process. In the beginning, I noticed that I heard slightly less, but now I can’t use my right ear for phone calls anymore. Not only is the sound significantly reduced, but the tones are also distorted. Additionally, I have tinnitus, which means that the hearing I do have is often drowned out by a ringing sound.
Since the ringing in my ears varies from day to day, I haven’t gotten a hearing aid yet. But I plan to try one soon. After all, hearing loss not only makes conversations difficult but also leads to a more isolated life. For example, I can no longer have a conversation in large groups. When multiple people are talking around me, I can’t understand my conversation partner anymore. Having a conversation is already quite exhausting due to the hearing loss and dizziness; adding other noises makes it even more difficult. As a result, I often skip office gatherings and events. I want to attend them, but I find facing my ‘disability’ challenging.
Because of my disease, I’m dizzy to some extent about 90% of the time. This dizziness is usually not very severe, but it’s enough to make me quickly tired and find it difficult to concentrate in social environments.
Social anxieties
The combination of hearing loss, tinnitus, and dizziness has had a significant impact on my life. Naturally, I’m a fairly extroverted person who enjoys being around people, dancing, and being active. But my personality has changed because of my illness. For example, I’m now much less active and impulsive.
With every outing, I have to consider the possibility of an attack. I don’t have a driver’s license, which is safer, so I rely on public transportation. But while I used to easily take a bus or train, I now think twice. After all, everything I do requires more energy, and anything that requires energy can be exhausting. And the biggest trigger for an attack is exhaustion. It’s a cycle that keeps me constantly focused on risk management.
In the prime of my life
Because of the effects of Ménière’s disease, I have not only become more introverted but have even developed social anxieties. It’s something I haven’t written about before because I’m sometimes a bit ashamed of it. I’m someone with good social skills and could navigate group settings very well until I was thirty. But now I find it increasingly difficult. When I see a group of people, I walk away. And when a stranger approaches me, I often don’t know how to respond. It’s as if I’ve forgotten how. Because everything takes so much energy, I prefer to keep my world small.
Sometimes I can get very sad about this. Especially when I realize that I’m 36 years old and people say that I’m ‘in the prime of my life’. It doesn’t feel that way. In fact, it makes me realize even more how much I could have achieved. Especially with my work. I’ve been an entrepreneur for almost 8 years now, and only the first 2.5 years was I the energetic woman who tackled everything. In the years that followed, I was just happy when I made it through a day at the office without having an attack.
Ménière’s disease and medicinal piercings
Fortunately, there are also bright spots. I’m not someone who hides away and accepts the situation as it is. That’s why I’ve tried various things over the past few years. For example, at the beginning of 2022, I got two medicinal piercings. These went through the vagus nerve, the nerve in my ears.
It’s difficult to say whether and, if so, how much these have affected my health. Because Ménière’s disease can change over time, but it’s certain that the number of severe attacks has decreased. In the past six months, I’ve had 2 severe attacks lasting several hours. In the first years, I had 2 per month, with an average recovery time of almost a week per attack. Most of the attacks I currently have are short, which is very comforting. My doctor believes the disease is subsiding. I hope so.
What I can confirm is that since I got the rings in my ears, I can cry more easily. I used to have a hard time with that. Seeing this as an advantage, it allows me to express and regulate my emotions better.
My body gave a sign
A few weeks ago, the piercing in my right ear, where the disease is located in me, suddenly opened. Fortunately, I managed to close it again eventually. But then it opened again and started slipping out of my ear more and more. I tried to push it back and click it closed each time, but this was very difficult. Eventually, it fell out of my ear. Although I tried to put it back in, I eventually gave up. This ear has been inflamed so many times in the past two years, while I never had any problems with my piercing in my left ear.
I’m not religious, but I do believe that sometimes things need to happen. Or that certain things are signs. When the piercing came out after so much hassle, I saw it as a sign that my body didn’t want it anymore. As if it was being rejected. And that’s okay. The earring is now in my jewelry drawer. I don’t know if I’ll ever put it back in, but at the moment, my ear clearly doesn’t want it.
The prism glasses and Ménière’s disease
Besides the piercings in my ears, at a certain point, my eyes also had other needs. In this case, a different pair of glasses. For most people, this means that their vision has deteriorated, but this isn’t the case for me. I’ve been wearing prism glasses for the past few years, which were made to help with dizziness. At the end of 2023, I noticed that I was increasingly experiencing eye discomfort. After an examination, it turned out that the prism was no longer helping me, but was actually making me more dizzy. My disease had clearly changed. However, I didn’t immediately throw away the glasses; I exchanged them for a model with different lenses.
I have a difference of 0.25 and 0.50 in my eyes, and something else has been adjusted in the lenses. I don’t remember the details of the adjustment, but I’ll take anything that can help with my disease. So even if it’s a subtle difference, I still always wear my glasses. I also immediately bought prescription sunglasses.
Strict evening routine
Since I’ve had this disease, I’ve tried many things. For some people, avoiding salt and chocolate or not drinking coffee helps. This doesn’t have any effect on me. What does help is getting more sleep.
It’s often said that 8 hours of sleep per night is sufficient. Of course, this varies from person to person, but I’ve noticed that my disease also has a significant impact on this. I hadn’t really noticed this in recent years. I considered 8 hours sacred and sometimes slept in on weekends. But for a few weeks now, I’ve been experimenting with more sleep, and it has a positive effect on my dizziness.
It sounds like a great invention, but I often also regret it. Because sleeping a lot and having a strict evening routine doesn’t make life more enjoyable for me. When I go to the office, where I work 3 to 4 times a week, I get up at 7 a.m. Then I’m at the office around 8:30 a.m. In terms of time, I depend on my husband; he has fixed working hours. I usually ride with him. To get enough sleep, I try to go to bed between 10 p.m. and 10:30 p.m. But to ensure that I fall asleep faster and the quality of my sleep is good, I have to turn off all screens at 9 p.m. I call this my offline time.
No more movies in the evening
Because I ride with him, I also don’t get picked up until he finishes work. That’s usually around 6:30 p.m. Then I’ve been at the office for 10 hours. When I get home, I take a shower, and my husband cooks. Sometimes we get takeout or have food delivered. Usually, we’re not done with dinner until around 8 p.m. This means I practically only have one hour to watch TV or play a game on my phone in the evening. Because I want to turn off the screens at 9 p.m.
This means that I rarely get to watch a movie in the evening with my husband, let alone go to the cinema with friends. I had a Pathé pass for a while, but it’s been canceled now.
On days when I work from home, about 1 to 2 days a week, the alarm goes off at 7:30 a.m. But I try to maintain the same routine in the evening. Although sometimes I allow myself an extra half hour of screen time.
There is light at the end of the tunnel
I realize that all of this sounds quite heavy. Yes, social anxieties, dizziness, hearing loss, and having to go to bed early are no fun. However, I’ve also learned to stay positive and to be aware of the things that are going well. For example, I’ve had a man by my side for almost 20 years who takes care of me in every possible way. I can discuss everything with him, and he’s always willing to help. He does the things I have to bend down for, like cleaning the toilet, but he also carries heavy bags, and I can always complain if I need to.
Additionally, I have Suit, my dog, who has also become a service dog at a certain point. Not officially, but it just evolved that way. He warns me when I’m about to have a severe attack or even when I have food poisoning. He also always jumps on the armrest of the couch when I’m about to take him for a walk, so I don’t have to bend down to put the leash on. And let’s not forget my friends and family.
I know there are people who lose their social contacts because of this disease. Fortunately, that has never been the case with me. I have a friend who has been coming to me for years because I’m afraid to travel the distance by bus. Because the last time I tried, I had an attack. But she’s fine with it. This weekend, I’m going to have dinner with her and my husband. Fortunately, my husband gets along very well with her partner. And so we always find a way.
6 years of living and doing business with Ménière’s disease, and now?
By the way, I’ve always been very open about my illness. If I have to do something that might make me dizzy, I just ask for help. Sometimes I can feel very mentally down, but I’m just happy that I no longer have an attack for half of the month or spend the other half recovering from it.
As I described earlier, this disease also has a huge impact on my work. I’m an ambitious person, and writing about work attire is my passion. I want to introduce as many people as possible to this fascinating world. That’s why I recently started making short, English-language videos on social media and also set up Prettybusiness World. Essentially, it contains the same articles as this website, but in English. For the past 1.5 years, I’ve been writing articles about work attire for newspapers and magazines, and I’m currently developing digital products for my readers. No matter how limited I am at times, my ambition is too deeply rooted in me to ignore.
Over the past few years, people have advised me to quit my business. After all, as an entrepreneur, your income varies from month to month, and an illness doesn’t make it any easier. If I can’t work because of an attack, there’s no income, and on top of that, I always worry about this ‘child.’ Going into employment is much easier in that regard.
I have love
But I have a passion, and that’s unique. Not everyone has this. And not everyone has built up a loyal readership or a website that’s part of the Dutch Digital Heritage. It’s all too valuable for me to throw away and work so that someone else can realize their passion. No, I’m here to stay. Prettybusiness and Prettybusiness World will remain here.
My choices may not be the easiest. I may not have millions of followers or that in my bank account. But I have love. Love for my life, the people and animals around me, and love for my work. That’s what I do it for.
Greetings,