Even when everything is going well, I still have difficult days.
Granted, it’s not like it used to be. After my Meniere’s disease diagnosis, every day was a difficult day.
When it wasn’t the vertigo, it was the persistent disequilibrium, or the blaring tinnitus that did me in. The ever present brain fog and fatigue only made things worse.
But suffering aside, the resulting loneliness and boredom are enough to drive you crazy all on their own; the bitter icing on a terrible cake. It’s especially hard when you have unmet obligations and responsibilities.
The past month has been a roller coaster for me, with incredible highs, but also with more difficult days than I can remember having in years.
Normally my life follows a pretty specific routine. I make an effort to avoid any major changes from happening all at once. The discipline is restrictive but it helps me keep my symptoms check.
This past was month, however, was different. I was a groomsman in a close friend’s wedding, finished writing my book, and went to an amazing concert. But at the same time, I had surgery, and had to have major unexpected repairs done in my home, including black mold remediation. I pushed myself way past my limits, and ended up paying the price, over and over again.
A Beautiful Wedding:
Despite everything, it was an honor to be my friend’s groomsman. We grew up together. We were neighbors, and have been close friends for so many years. We even lived as roommates for a while. That we’re still so close after living together for five years is a testament to our friendship.
The whole weekend was amazing. I got to see old friends I hadn’t seen in years, and I was able to push through to the very end. But I only barely made it. By the time I got home after the wedding, I was disassembled. I didn’t fall asleep as much as passed out. And the next couple days were rough.
The following Monday, I was dizzy all day, and struggling hard against the fatigue. I had so much work to do, but wasn’t able to get anything done. With much resignation, I decided to rest. I rested on Tuesday, and part of Wednesday as well.
No matter where you are in your journey with Meniere’s disease, you are going to have difficult days at some point or another. You are going to need to rest. But how do you rest without pulling your hair out from frustration and boredom? Fortunately I learned a few helpful tricks over the years
When facing a difficult day, the first thing you have to do is acknowledge your circumstances. It seems trivial but it’s not.
I’m very hard on myself when I have things to do, but am not well enough to do them. Eventually I get past it, but my initial reaction is always one of self-loathing. I start to think that I’m just being lazy. I tell myself I’ve been through so much worse than this, that this is nothing. It always feels like I’m doing something wrong.
But it’s not nothing, or laziness, or even wrong for that matter. Ultimately it is what it is, and when it happens, resting is always the right thing to do. Acknowledge the pain and give yourself permission to rest.
Sleep is an important part of recovering from a difficult day. Make sure to get plenty of extra sleep. It will make a big difference in the time it takes you to bounce back. You also don’t have to fight the exhaustion. It’s okay to give in and get some during the day. But keep in mind you won’t be able to just sleep the days away.
How to Entertain Yourself:
There are many ways to entertain yourself while resting on difficult days. But in my experience some are better than others.
If you aren’t having a vertigo attack, you obviously are going to have more options available. Many people like to watch TV to pass the time. I, however, do not recommend mindlessly watching television for hours on end. It tends to make my brain fog and fatigue much worse. It’s a better choice to find a way to stimulate your mind intellectually.
You can do this with a TV, but not by binge watching sitcoms on Netflix. Watch an interesting documentary instead. Learning something new activates your brain in ways that seem to help mitigate brain fog.
If your symptoms aren’t severe, you can also read a book. It can be hard to focus initially, but once you get into it, the benefits are substantial. After the wedding, I picked up a copy of Fahrenheit 451 by Ray Bradbury, and read it over the following several days. It was a fantastic book and it kept me entertained for hours. It also helped to stimulate my mind and lessen my fatigue.
I listened to a lot of audio content as well. If you still have some of your hearing left, audio can be a great way to entertain yourself, especially if your symptoms make it hard to read or watch TV. It can really help to pass the time and activates your mind and imagination much like reading does.
One great strategy is to listen to comedy albums. Most people don’t think to do this, but it helps on so many levels. It engages your mind, is highly entertaining, and most importantly, it gets you laughing and puts you in a much better mood. It is an easy way to turn around a difficult day. You can find thousands of great comedy albums for free on Spotify and Youtube.
Audio books are another great strategy. With Audible, you can quickly and easily listen to hundreds of thousands of audio books. You can download audio books directly to your smartphone with the Audible app and be listening to a great book in minutes. Plus, you can get two FREE audiobooks with this promotion. The promotion is for a 30 day free trial of an Audible Gold Membership, which normally costs $14.99 per month. You can download 2 free books during the free trial, and even if you cancel your membership during the free trial, the books are still yours to keep!
If audio books aren’t your thing, podcasts make an excellent alternative. Think of a podcast as an on-demand radio show. Podcast hosts record an episode, and upload it to a service like iTunes, where people can download or stream the episodes at their leisure.
If possible, it can make a big difference to enjoy some of these options with a friend or loved one. Laughing away at a funny comedian or listening to a fascinating interview with someone you care about is some of the best medicine I’ve ever found.
Over time, tension can build in a patient/caregiver relationship. Spending quality time together, even on difficult days, can go long way towards relieving the stress. It can strengthen the relationship you have as well.
Difficult days are never fun, but they don’t have to be miserable.
With the right perspective, and some interesting entertainment to pass the time, you can get the rest you so desperately need, and alleviate some of your suffering, too.