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Who lives with Ménière’s disease or knows someone who does knows how challenging it can be. Especially since there is so little information available online. That’s why, in 2019, I started a series of articles sharing my experiences. In today’s article, number six already, I’m sharing tips & tricks for living with Ménière’s disease. Over the past year, I’ve tried out quite a few things again, from a household robot and cycling support to finding Ménière’s-proof hobbies. And much more.
A quick recap on ménière’s disease
Before diving into my tips and experiences, I want to emphasize that this article might contain terms and references that don’t mean much to you. That’s why I’ve listed below the articles I’ve written about Ménière’s disease since 2019. Each article includes a brief summary so you can easily find the information you need.
- November 2019: Working with Ménière’s disease* (Explanation of the disease, how I found out about it, and how I manage it at work)
- December 2019: Prism glasses at work: do they really help?* (About wearing prism glasses for Ménière’s disease)
- April 2021: Working with Ménière’s disease: the solution is near* (About research being conducted, finding a specialist, and self-care)
- May 2022: A medicinal piercing: does it really work?* (About getting and experiencing a medicinal piercing for Ménière’s disease)
- April 2024: Six years of living and working with Ménière’s disease (About hearing loss, social anxiety, sleep patterns, and an evaluation of prism glasses and medicinal piercings)
*These articles are written in Dutch, you can use the translate function on your phone or Google Translate if you want to read it in English.
Tips & tricks for living with ménière’s disease
If you’ve read my previous articles, you know I’m not someone who simply accepts the consequences of this disease. I’ve experimented with diet, medication, sleep patterns, special glasses, medicinal piercings, and much more. And since publishing my last article in April 2024, I’ve tried a few more things. I want to emphasize that what works for me won’t necessarily work for everyone with this disease. This article is purely meant to provide inspiration.
Journaling and coloring
During the summer of 2024, I was sailing through the waters of the Haarlemmermeer in a small boat with my husband, his colleague, and his colleague’s wife. During our conversation, she told me that she wrote in her journal every morning. She also pasted in things she had received—receipts from dinners, stickers, or small cards. According to her, it couldn’t be called a scrapbook because she didn’t really put in effort to make it look nice. It mainly gave her the space to write things down daily and process them.
Something clicked inside me. I had to start journaling. As a child, I was always creative with crafts and coloring. Why not pick it up again and combine it with a diary? Writing comes naturally to me, and for someone who works alone all day, this could be a great outlet.
I bought myself a beautiful, wine-red notebook. From that moment on, I decided to write every day. Since I tend to experience more dizziness in the summer, I can sometimes feel a bit down. So, in addition to my daily stories, I wrote down three things I was grateful for each day. Sometimes, they were small things, like a pleasant walk with my dog. But sometimes, it was something big, like the electric bike my mother gave me.
My journal became my unfiltered outlet for everything inside me. I wrote stories but also let my inner creativity run free. Whenever I did something fun, I printed out photos from my phone and pasted them into my journal. Decorated with colored paper, stickers, and handwritten texts, this became a wonderful hobby. Soon, I started adding coloring pages, tearing them out of my coloring books so they could become part of my story in this small yet so full book.
Pros and cons of this hobby
The biggest advantage of this new hobby is that I now have a hobby at all. I’m naturally a workaholic who never really had a hobby I could lose myself in. Now, in the evenings, I spend less time staring at screens and can put my thoughts on paper instead. As a result, I sleep better and often fall asleep faster. Plus, I can be creative without any deadlines or judgment from others. I have even created my own journaling space in the living room. I sit at my secretary desk (a cabinet with a fold-out writing surface), which I can easily close when I go to bed.
Still, Madame Ménière likes to make this hobby a challenge now and then. At first, I used a lamp that was too bright, which wasn’t great for my head. That’s now solved, as I’ve placed a dimmable lamp in my secretary desk. Depending on how dizzy I feel, I can adjust the brightness. I also discovered that not all coloring pages are suitable for my eyes. Some coloring books have golden lines or glitter details. I think they look beautiful, but my light-sensitive eyes aren’t as happy with them. The glare from the lamp quickly gives me a headache. And on days when I’m extremely dizzy, I can’t do any of this at all. No matter how much I enjoy it, I’m still sitting at a desk and looking downward.
Robot vacuum cleaner
At the beginning of January, my husband started a new position as a manager at a large, new hardware wholesale company. This took a lot out of him, both physically and mentally, leaving him with little time to help around the house. And given my illness, I can’t do everything either. So, for the first time, I bought a robot to help with household chores. A robot vacuum cleaner, to be precise. We call him James, and he takes an impressive amount of work off our hands. He doesn’t just vacuum the floors we walk on but, thanks to his small size, also gets under the bed and the couch. And with a household of two people, two indoor cats, and a dog, this saves a lot of effort.
James can also mop, though I haven’t tried that feature yet. Regardless, I highly recommend it to everyone. The only thing I still have to vacuum myself is the stairs.
Electric bike
Last summer, my mother spontaneously gave me an electric bike. At first, I found it difficult to accept such a big gift. But my mother insisted that she wanted nothing more than for me to have a bit more freedom. Cycling takes much more energy for me because of my illness. This is partly because my little dog Suit, who always rides in the basket on my bike when I go to the office, weighs about 10 kilos. Where I used to cycle to work every day with ease, I could only manage it once a week since my diagnosis. When my dizziness was particularly bad, I sometimes couldn’t cycle for months at all, even though I love it so much. I’ve also noticed that I feel much better when I cycle regularly.
Since getting my electric bike, I’ve regained some of my freedom. When my head is feeling okay, I cycle to the office about three times a week. In total, that’s three hours of cycling, which is a big deal for me. Plus, on days when I work from home or have time off, I find it much easier to go places.
I’m doing well
I’ve now been living with Ménière’s disease for over six years, and I’m happy to say that I’m doing well. In the first few years, I had an average of two severe attacks per month. It has now been over a year since I last had such a long, intense attack. Of course, I’ve done a lot to reduce the chances of attacks, but with this disease, there’s no guarantee of a dizziness-free life. I am still always dizzy and have constant tinnitus. But the intensity has lessened, and for that, I’m very grateful.
Since things are going well, I reduced my medication a week ago. I discussed this with my doctor, and since the type of medication allows for easy tapering, I could do this myself. Previously, I took two Betahistine pills three times a day, but now I only take one pill per dose.
I joke sometimes that I live like a grandmother, and to be honest, it still feels like that. I function best when I get enough sleep and take regular breaks. Most days, I sleep for twelve hours straight, and after washing my hair, I need to pause before I can do anything else. Sometimes, this really frustrates me—especially when I realize that I’m only 37 years old. But then I remind myself of all the good things I have. A home of my own, a wonderful husband, a dog who is always by my side (and even warns me of attacks), two lovely cats, work that I love, and a handful of friends and family who are always there for me.
The world may keep spinning, but thankfully, the rest is stable.
Best wishes,
Aileen