Monday, April 28, 2014

Bad at Mornings

by Alix Mayer, Spirochicks Co-founder

It's 9am. I wake up with nausea, a headache and joint pain. I slept, so it's going to be a good day. I don't feel well, but don't read sarcasm into this: I’m happy. If I'd been awake all night due to the insomnia that began in 2002, I would have nothing to wake up from. The start of a really bad, ugly day occurs after a night of feeling exhausted and ready to sleep, yet being completely unable to drift off. Those are the days I force myself out of bed. I don’t wake up since I haven’t actually slept. I merely get up. The key to my daily life is this: Do I wake up or get up?

Lately, I’ve been waking up almost every day, so I think, as I have so many other times in the past, that I’ve solved my insomnia problem. I’m always proven wrong, but I, like many patients with Post-treatment Lyme disease Syndrome (PTLDS*), survive on hope. For now I think I won't ever have insomnia again. I can celebrate that I'm substantially recovered from the worst symptoms.

Getting to wake up feels glorious. I no longer take it for granted. At 9am, the house is empty except for Sport, our yellow lab who begs me for his morning bone. My husband has left for his office after helping our 12 year old twins get ready for school. Could I get up and do that, too? Yes, I did it for years, but it's painful after insomnia, and I always had to go back to bed afterward. Getting up and going back to bed does not have great results for my symptoms. I need a solid stretch of sleep and a natural wake-up, not an alarm clock.

In the mornings after insomnia, I used to feel like the monster Grendel as portrayed in the film Beowulf (2007). Grendel is the horrific mythical monster who comes screaming into dining halls, with hands covering his ears, attacking people because he can’t stand the noise of their reveling. I somehow identified with him on my post-insomnia mornings, as all stimuli -- especially noises -- were so painful and crazy-making for me. In my kitchen, the sound of my husband running his espresso machine felt like someone was grinding glass deep into my skull. I felt so sick and painful on the inside, I expected my exterior to somehow match. I would look in the mirror expecting to see this horrific character, like Grendel, but it was always me staring back. I didn't feel like attacking anyone, I just felt like crawling into a dark, quiet hole.

My worst days of insomnia are definitely behind me, but I'll still have a shaky night here and there and have some Grendel-light type of days. These days, after I wake up (see, I said wake up, not get up!) I start my first daily job: trying to minimize the nausea and pain of this daily Lyme hangover. Most people who have symptoms due to PTLDS say they feel the worst in the morning. There are many theories, but no real answers.

About the Lyme hangover. I don't drink. Except for a sip of wine a couple times a year, I haven't had a drink since 1999. But I remember what a hangover is. Having had a case of Lyme disease that went undiagnosed for eighteen years, I will probably always feel like I'm hungover in the mornings. The good thing about a hangover is that it slowly lifts. That is the case with a Lyme hangover as well.

While I've distracted my dog Sport who is in the yard working the meat off his raw bone, I do treatments and take supplements that make the Lyme hangover resolve more quickly. I usually spend a couple hours on this every day.

By 11am or noon I'm feeling much better and can start my work. Oh, wait, first I have to throw a ball for Sport, who is now barking at me that he's had to wait all morning for his favorite activity.

After ball chasing, Sport is panting and will leave me alone for a few hours, so I can start my work. I used to work in strategy and research at Fortune 100 companies. I've had to reinvent myself after losing my career to undiagnosed Lyme disease when I was only thirty years old. When I hit rock bottom with my health, I was the co-manager of a worldwide group at Apple Inc. and was forced to take a medical leave of absence due to exhaustion, a 24/7 migraine, arthritis, digestive issues, and cognitive impairment.

My current work has to fit my own hours. These days it's mainly research, writing and health coaching. I typically leave my mornings totally unscheduled. For the remainder of the day, I have to allow for the interrupt-driven nature of my symptoms. It's an all-day negotiation. I try to rise above all my symptoms, but like a crying baby, they frequently demand unscheduled attention.

This is what it feels like to be substantially recovered from a long-term case of Lyme disease. If you see me in the morning, I'm a lot less social and may try to avoid you. If you see me in the afternoon or evening, you'd never guess anything was different about me. After my kids get out of school each day, I'm taking care of them and driving them to all their activities. I'm always nursing at least a mild headache and juggling another symptom or two, but other than that, I can function pretty normally. I'm actually grateful to feel like this. Unless I slip back into all-nighter insomnia with Grendel days, I feel pretty good in the afternoons and evenings and live a very normal life.

The bottom line is that I suck at mornings. I can't adapt to a 9 to 5 schedule just like someone in a wheelchair wouldn't be expected to climb a mountain. Don't expect me at your morning meeting, but do expect me to do great things with my afternoons and evenings.
Alix Mayer, SpiroChicks co-founder, is happy to report she is substantially recovered from Lyme disease, though she's not totally symptom-free. She is featured along with Mariel Hemingway and Gabby Reese in an upcoming documentary about health mavericks, Blood Berries or Butter.  She is co-authoring a book on Lyme disease and works as a health coach and consultant to non-profits.
*Author's Note: The latest research into PTLDS from John Aucott, MD at Johns Hopkins shows that 11% of promptly and fully-treated Lyme disease patients have a measurable, functional decline in Quality of Life, rendering them bedridden and dependent. Another 23% of promptly and fully-treated Lyme disease patients have measurable declines in Quality of Life, but are able to work and manage symptoms, even if they fall into bed right after work. The patients in Aucott's studies are all treated promptly, and all have a bull's eye rash and test positive on the CDC two-tier test. Patients like me are not treated promptly (18 years is not exactly prompt) and have a far lower chance of making a full symptomatic recovery from Lyme disease.


Kim said...

Interesting how the way we are affected by Lyme is unique to all of us. I don't have insomnia. It sounds miserable. I'm so sorry you have to battle that particular beast. I function better earlier in the day. By afternoon and evening I'm a total crankpot.

Alix said...

Thanks for the perspective, Kim. It is astounding how different we all are with the same illness. I'd love to know other people's daily patterns - I guess a lot of us would love to actually have a daily pattern since Lyme symptoms can be totally unpredictable.

Anonymous said...

First I want to thank you for your honesty about the plight that Lyme has left you with. I'm running into more and more people on monthly bases that either have been diagnosed with Lyme or have friends and family who have been diagnosed. "May" being Lyme awareness month it's important that we get the message out about this devastating disease. I can't imagine the pain and suffering you have gone through over the years, and how hard it has been on your family. Thank you once again for sharing your story.

Alix said...

Thanks so much for acknowledging my fight and the fight of 1.5 million in the US. Too many people are diagnosed too late and too many fail treatment. Really appreciate hearing from a non-Lymie! (assuming you are not...)