Exercise a bit

Your body hurts but you cant let your muscles get in a complete downward spiral. When I was in the worst few years post-lyme infection, I bought a FitDesk.

My FitDesk awaits, while Mr. Hats looks on.
My FitDesk awaits, while Mr. Hats looks on.

My intention was to exercise at home, without subjecting myself to air pollution. I had also read some convincing personal accounts about how regular intense exercise helped some people heal from Lyme. Lyme doesn’t like high temperatures, so maybe that is why.

The intensity that you can exercise  may depend on what tick-borne co-infections you might have. But don’t stop using those muscles alltogether.

I did not have the energy to  “work out,” but I tried to keep some muscle. I pedaled really, really slowly on a super easy setting. For a long time it was the lowest setting.

While on the bike, I watched movies and masterpiece theater, or browsed the internet on my iPad. Usually, I also ate food and drank green tea!

With so many distractions, it was tricky not to overdo it.

My legs would feel weak and hurt when I got off, but during the ride I didn’t notice.  If I pedaled to hard, or too much, I’d end up limping with swollen legs. But circulating the blood helps filter the crap out. So it helps things like systemic inflammation.

Riding had a whole other affect on my head. The circulating of my blood also helped my brain somehow. As my head pressure built up each afternoon, I found myself craving the bike. Many days, the only time my head let up, what when I was pedaling.

I don’t recommend pushing yourself if you are ill. My Lyme doctor encouraged me to move, but said my muscles would not really increase till I was free of some infections. The normal ability to build or repair muscle was inhibited.

I still crave the bike now, when late afternoon head pressure hits. I also rely on it emotionally.

This illness has been hard. So many months I felt lost and confused by my treatment options. Often, I was not making any progress, and getting even sicker. Sometimes, the only positive thing I could think to do each day was ride my bike.

Riding was nearly the only time I didn’t feel like I was crying inside. It was often the only part of my day that felt like I was moving forward. Ridiculous, but the only time I could move forward, was on a stationary bike. The irony did not escape me.

I am scared, but encouraged and hopeful

When I stopped the IV antibiotics in late November 2016, I also happened to be in the middle of investigating a suspicious breast lump. A stress-filled two months later, I had a mastectomy and DIEP reconstruction.

DIEP is a new reconstruction  method that replaces your breast with tissue from your abdomen, kind of like a tummy tuck, but you move the fat. I was naturally worried, such a physical attack would cause me to relapse with Lyme.

I am writing this almost two months post surgery. It kicked my ass, as expected, but  I healed very quickly compared to most breast cancer patients!

Today, I am still having hot flashes, which concern me, and still fight vertigo symptoms and some head pressure. I have fatigue, again as expected, but I have not seen my worst Lyme symptoms come flooding back.

I ride my exercise bike for two hours each day, and I am ramping up the settings from a sleepy casual pedal to a faster churn. This is a big deal!  Four months ago, the fast churn would’ve had me limping the next day with swollen legs from mitochondrial issues.

I may be ready to build muscle again 🙂 I am also trying to work on my arms, which are beyond weak.

My Lyme doctor tells me that if I do relapse, treatment can address it quickly. I may be down for a couple weeks or a month. That sounds inconvenient, but like a cakewalk after all these years.

Until they make more treatment breakthroughs, Lyme and the other tick illnesses in my body will always be there. I can not burn the candle at both ends, or run myself ragged. They will take hold, if I do.

My whole life was disrupted. It was not only derailed for several years, but permanently changed. Casual friends are gone. Old creative goals are gone. Old jobs are gone. Financial independence is gone. My muscles are nearly gone. My left breast is gone.

I have a lot of catching up to do with my partner, family, friends and pets. I’ve been in life in recent years, but like an erratic ghost to all who know me.

But in about a month, I am planning to start working, living and enjoying myself. Right now I am still very much in a chrysalis.

 

 

 

Hey pop stars… How you doing?

It’s funny, but I now find an odd concoction of Lyme-ridden pop stars relevant to my life. Some of them got sick when I did. Some have been sick for years. Their experiences are eerily familiar to me.

I am always pissed they don’t dish on their EXACT treatments. But it is helpful for me to hear them talk about what their bodies are (or were) capable of at different points in time. And how they get by now.

hannasplitKATHLEEN HANNA on a rebound in Spain.(GIF from Pitchfork.com)

She got diagnosed about a year before me. I had read she cancelled a tour a year or so ago. Imagine how I felt one day, when I wanted to peek at her blog to see how she was doing, and BOOM! There she is in video cartwheeling into a split on stage in Spain !

She has her ups and downs, but I often wonder if I will get to have any more “ups.” The rock-n-roll acrobatics were certainly inspiring, even if she can’t do that every week.

There is an excellent documentary on her which also covers the Lyme experience that is still part of her daily life — The Punk Singer. It is such a real example of how Lyme can take a dynamo’s life and turn it upside down.

 

1460348459258JOHN LURIE painting Wolf by day. Wolf by night, watercolor on paper, 20″x14″, 2015

Lurie had to stop his incredibly complicated music, and now he paints. I myself have issues with music these days, I had been dabbling in recording again around the time I got sick. Now arranging recordings is just confusing. I sometimes have a hard time even listening to music. This makes me sad, but am still very comfortable with visual art.

This article  touches on John, his illness, and his current and former art, which are cool.

debbie-gibsonDEBBIE GIBSON‘s gaunt Lyme look worried fans and inspired critics to attack.

We entered into Lyme with the exact same symptoms. Poor thing had the whole  Gee, I can’t seem to digest meat.

She got lost driving. I got lost walking.

And the all too familiar — not having kids, and wondering if you would have tried if you never had Lyme.

Today she is looking healthy, and back to creative projects, but can’t keep the pace of her pre-lyme days. She touched me a bit when she recalled telling a doctor, “I am in here somewhere.” That is exactly how it feels.

 

 

You’re not crazy, Lyme is a real jerk

When NYU Hospital told me I had Lyme, the CDC website and a lot of other official statements certainly did not alert me to what a true shit show I was now starring in. Neither did my infectious disease specialist.

I am one of the lucky  ones. I have a name for what has ruined my entire life the past few years. I have a CDC positive diagnosis. After loads of treatment, I think I am as well as can be hoped for now? I think I am ready to be functional, kind of like a normal person.

Yet, even in the Lyme ridden North East, my treatment and recovery have been filled with a world of people who don’t understand what I am dealing with.

My heart breaks for every person who is now suffering like I did, but are still undiagnosed.

Many people get no sympathy or help from their workplace, or spouse, family or friends. It gets hard for these people to tell themselves every day, “I am not crazy something is really wrong.”

So I’m just saying, you are not crazy. Easy to say, easy to forget.