column logo

Water makes up about 60% or more of our bodies, according to the Mayo Clinic. It is necessary to drink water so that our bodies can function correctly. No matter which bodily system you focus on, water helps to create balance and improve overall health. It keeps us hydrated and ready to perform throughout the day. The greater your water intake, the less chance of dehydration. In other words, the less chance of being drained of energy.

Think of it like this: our body is like a hotel, and water is the staff that comes in to clean what we left behind. It replenishes our cells and tissues every day by getting rid of waste just like housekeeping services come to hotel rooms daily. Similarly, water acts as a cushion for joints in the way room attendants tidy up to make our room comfortable. If our hotel room is too hot or cold, guests will typically let housekeeping in on the problem so that they can be comfortable “at home.” If our body is overheating or is not warm enough, water helps us control and regulate our body temperature. Water also keeps us alert and focused in the same way housekeeping focuses on their customer service skills to provide guests with the best experiences.

Read about Friedreich ataxia (FA) comorbidities

In order to survive and keep ourselves healthy we’re often told to drink 8 glasses of water daily. That sounds reasonable, right? It’s a simple goal for many, but to me drinking that much water isn’t suitable when living with FA.

I associate a physical condition like FA with the outside of my body. It affects various exterior body parts, yes, but it doesn’t stop there. It also has a negative impact on the muscles inside my body, which in turn prevents different bodily systems from doing their jobs correctly. For example, the urinary system often takes a hit in FA patients with FA, and lately, I’m learning that I’m no different.

The urinary system is made up of more than just the bladder, but for the purpose of the article that is what I’m focusing on. Patients with FA have a high chance of developing urinary incontinence, whether it be frequency, storage issues, and/or urgency. Not everyone with FA experiences all of these symptoms, and others experience more than 1 at a time.

Within the last 8 months, I have noticed that I am going to the bathroom quite frequently. No matter how little water I drink, I’m constantly scooting to the bathroom. It’s a process to go to the bathroom when you have FA. In my case, I have to transfer from wherever I’m sitting back to my scooter and park at a certain angle so I’m not too far away from the toilet (most of my falls occur in the bathroom). I have to put on my shoes because my feet are too sensitive to touch the cold floor, and if I have socks on it’s too slippery without shoes. I have to hope my legs are strong enough to hold me up and that my ankles don’t roll while I get myself together. After I’m finished I have to do it all over again. Don’t even get me started on having to go in the middle of the night when my legs aren’t that strong.

I try not to drink water (or anything else) if I’m out because I’ll just have to go to the bathroom. If I’m out at a restaurant I’ll have a glass of something, maybe a refill if I’m really thirsty, but I have to be careful. I  don’t know if that restaurant’s bathroom is accessible. I know my limits by now.

In January, I started taking Tolterodine. It’s a common prescription used to treat symptoms of overactive bladder. Tolterodine doesn’t magically fix the problems caused by your bladder, but it does help most days. I sometimes still struggle with the frequency of going to the bathroom. My bladder muscle is still affected by FA, and taking a pill won’t change that. However, most of the time I am overall just more comfortable. As I said, getting to the bathroom and having to maneuver to the toilet is a process.

Drinking water is important for the body, whether you have FA or not. I’ve never been a big water drinker but in the past 5 years that has more to do with my bathroom issues. I want to stay as healthy and hydrated as I can, but trips to the bathroom sometimes just aren’t worth all the work.