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6 Powerful Lessons I learned From Managing Acute Vertigo and Chronic Illness

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A bit of background before going into the story of my intense bout of benign paroxysmal positional vertigo (BPPV): I have fibromyalgia, myalgic encephalitis/chronic fatigue syndrome (ME/CFS), irritable bowel syndrome (IBS) and borderline personality disorder (BPD). I generally manage my chronic illnesses and mental health quite well — with the usual ups and downs, of course. Having vertigo on top of these conditions reminded me of a few important things.

The other week, I woke up on a Friday feeling a bit dizzy, but this is pretty typical for me, so I didn’t think much of it and went to work as usual. I really struggled during the day, but I pushed through. When I got home, I went straight to bed because I felt like the world was spinning intensely. Any time I closed my eyes, the spinning feeling got worse. I managed to eat some dinner but couldn’t sleep due to my nausea and dizziness. The dizziness and nausea intensified to the point that I felt sick a lot over the next two days.

The whole next week was a bit of a blur, but I know I could barely keep my eyes open, move my head, or stay upright. The nausea was so intense that it was difficult to eat or drink. I couldn’t even distract myself with social media because I couldn’t even look at my phone either. I had to ask my partner to cancel prior commitments and also call in sick to work for me as I couldn’t be on my phone at all to send messages or make phone calls. That week, I spent a lot of time in bed sleeping and listening to audiobooks.

By day five with no improvement, I went to see the doctor, who diagnosed me with BPPV. Why they use the word “benign” in the name I have no idea because nothing about it feels “benign.” My doctor got me to do the Epley maneuver and sent me home with some medication, saying that for 95 percent of people, this type of vertigo clears within two weeks.

Of course, my catastrophizing brain went, “But what if I’m part of the 5 percent for whom it doesn’t clear up quickly?” I was already getting stuck in anxious, catastrophizing thoughts linked to the last time I had had an intense unknown viral illness in 2013 that preceded me developing ME/CFS and also triggered a whole cascade of additional challenges. I was worried this was a similar situation, and I would be back to square one. What if the vertigo didn’t go away? What if I went back to not being able to work?

I slowly started to be able to spend short periods of time sitting upright, was able to eat proper food again, and could spend short amounts of time on a screen to send urgent emails. By the following week, I returned to work with reduced hours.

Now two weeks after the initial onset, I am still a bit unsteady on my feet, the world still lurches if I move my head too quickly, and everything feels a little unreal, but I am able to mostly do my daily tasks again. I have noticed that my energy capacity has reduced considerably, though.

As I think back over this period, I realize I have many important reflections, reminders and lessons from my experience with vertigo:

1. Communicating clearly about my vertigo-related limits and needs is important.

My vertigo has been a good reminder to ask directly for what I need, like time off work during the acute phase. I also asked for reduced hours when going back to work, reduced tasks and expectations at home, and support with daily tasks, and communicating these needs went well and reminded me that it is good to ask for help.

2. There is a real difference in perception between acute and chronic illnesses.

It has been really interesting to have such an affirming, supportive response from my workplace and family about needing time off and reducing tasks due to my vertigo. This stands out even more because it is so different from the response when I make the same requests due to my ME/CFS or my fibromyalgia. People now accept that I am unwell and need time to recover without a need for justification, and that has been lovely, but it also makes me sad that this can’t also be the case for people with other chronic illness and mental health conditions.

3. Going back to basics with pacing my life helped me during my vertigo bout.

As the world slowly got less “spinny,” and I was able to do a few more tasks, I was surprised by how low my energy capacity had become. I’ve had to consciously pace out my days, but taking life more slowly has helped me manage my vertigo.

4. Listening to my body and respecting the need to rest helped me cope with my vertigo symptoms.

It almost felt easier when things were so hard that all I could do was lie in bed and listen to an audiobook. Then when I started to be able to get up and do a few things, of course I wanted to do more than was possible for me at the moment. Living with vertigo has been a good reminder to really tune back into my body and respect my need to rest and heal. This is something I am constantly working on in my chronic illness self-management. I really struggle with allowing myself rest a lot of the time, but my vertigo has helped me practice taking a rest.

5. Catastrophizing did not help me cope with my vertigo.

Getting stuck in my head and catastrophizing the situation was not useful and made me feel worse. I kept shifting in and out of radical acceptance around what was happening in the moment as my future-focused brain kept feeding me “what if” scenarios I didn’t want to think about. Thinking about the past consequences of my last intense acute illness just brought back grief, loss, and trauma. When I was able to stay focused in the present and take each day one at a time, my symptoms were much more manageable, but this was — and still is — an ongoing process.

6. Pushing through was not the way to handle my vertigo.

On the first day of my vertigo bout, I wasn’t feeling ill enough in the morning to call in sick to work, but as the day progressed and things got harder, I realized I definitely did not need to complete my full shift. In hindsight, I know I should have gone home early. In the recovery process, I have also been struggling with feeling like a burden and like I need to do more, but in reality, I am still recovering, and pushing through my vertigo will delay the recovery process.

My vertigo was a full-on illness that I hope does not repeat itself, but it was also a good reminder about going back to some basic strategies of self-care, pacing, self-compassion, and asking for support.

Getty image by PheelingsMedia.

Originally published: May 6, 2022
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