30 DAYS

30 days. That’s usually the stint in rehab, right? I shouldn’t know. My problem isn’t addiction, it’s this freaking chronic illness that sneakily steals a whole month away from me in the blink of an eye. Maybe addicts can relate. Bacterial and viral infections have their “binges” that take over the body and you just have to wait it out until you feel anywhere near “normal” again, which for CFS is exhausted without feeling like you’re on your flu deathbed.

The hardest part about being a Type A person dealing with imbalances is that your body routinely sabotages any hope of structure so that you’re anxious just thinking about all the self-imposed deadlines you’ve set. Moving forward, that’s the biggest challenge having an illness that’s hellbent on holding you back.

There’s so much to share with you, it’s ridiculous. Suffice it to say, I apologize I haven’t written in a while. It’s not like me. It’s very much like these illnesses. At least the initial setback involved something meaningful. It was Nick Kroll, the comedian. And John Mulaney, his sidekick. I took an hour train ride into the city to see their Broadway show. It was hilarious. We were hungry after, and though it was late, we decided to go to a gluten-free restaurant in the theater district that makes the most amazing gluten and yeast-free pizza. I indulged. What a treat. We took a late train home. It was too late. The energy expended was too much. I got to thank Nick Kroll for being comedic therapy these last few years I’ve been sick. He said, “oh, that’s nice of you to say that.” He said that same thing to his next fan. I got home about 3 a.m., beyond exhausted. The exhaustion lingered because with chronic fatigue, you don’t just “bounce back.” One night of walking too many city blocks, staying out too late, using up too much energy, and your body zeroes out it’s energy account so you’re left bankrupt for days, or in my current case, weeks. It’s called post-exertional malaise.

Two weeks later, unexpected bills ate into our checking account. There wasn’t enough left for rent. And that’s when adrenal deficiency hits hardest, when you drop into fight or flight mode. When you feel held back from living your full potential, too exhausted to pursue your dream, too drained to fix the financial problems. Couple that stress with the lingering effects of a late night in the city and….

that’s why I haven’t written in 30 days. I’ve been climbing my way out of a dazed, zombie-like exhaustion that sucks all creative energy away and sets you like a jello mold into a state of suspension where days bleed into each other, and the only thing that changes is what time the sun is up.

I’m back now, with no grand plans to ef up my energy expenditure again. Of course, life can throw a big, fat monkey wrench into this well-meaning fluid true storytelling. My life has been a series of a great big hook taking me off stage just when things are getting good. But for now, we’ll affirm this won’t happen and I will continue with the next chapter in my story: How I survived a one-week-to-live diagnosis.

Medical Intuition Tip: No matter how much you want your body to adapt to your desires, sometimes it’s easier to accept it’s limitations.

 

Medical Intuition 101: It Nags

I was in my late twenties and I didn’t take my intuition seriously. One of my friends, who was pursuing a Master’s in social work, said I was such a good reader of people I should become a psychologist. I entertained the idea, spent one year working toward a PsyD degree. I quickly realized my ability to read people wasn’t enhanced by studying clinical psychology. The courses, though interesting and useful for personal development, were analytical, and thinking of people this way, trying to fit them into boxes based on their behavior, shifted me into ego. When analyzing people through ego, I found my ability to organically read and understand people wasn’t as easy. In fact, it felt very complicated. I asked myself, “Why do I need to go through all of this complex theory when I can tune into people and get right to it?” Then came Statistics. And I said, I’m out. I happily returned to my first career, newspaper reporting, where I could use my intuition freely while interviewing people and still feel I was making a difference.

I was used to naturally using intuition to help confused friends and family seeking clarity, but I didn’t realize that I also had the ability to read myself. I had always been a spiritual person, believed in angels, and prayed to saints, Jesus and Mother Mary. But I didn’t think I was anyone special, that my guardian angel would go out of his way to help me out. I didn’t think God installed a GPS in my soul, one that would automatically guide me, whether I listened or not.

This time, in my late twenties, I chose to listen. This health crisis was too loud to ignore, and I had a nagging assurance that I had the Epstein Barr Virus and it was making me very sick. I refused to continue suffering without receiving validation. So I asked my primary care doctor in Long Beach, New York, to test me for it. He reluctantly did.

My heart was racing as I sat in his examining room. This was the moment when my gut feeling would be validated – or not. Maybe it was just psychosomatic. Maybe I didn’t have the virus and this was all in my head. No, a stubborn voice told me. This is not in your head. You are not making this up. You have the virus!

The tall, skinny doctor walked in wearing an outdated maroon and beige striped shirt, nerdy wire-rimmed glasses, his thick, wavy black hair looking very Kramer-ish. He slid the lab results out of a folder.

“Well?” I asked, sitting on the edge of the cold, steel examining table.

“Yes,” he confirmed.

“I do have an active Epstein Barr infection?”

He hesitated. Sighed. Rolled his eyes toward the ceiling. “It doesn’t mean anything,” he said with irritation. “Everyone has this virus. Listen, I think you’re having a hard time dealing with the fact that you have Crohn’s disease. I’m going to give you a referral to a psychiatrist, it can help.”

I felt my face get hot, my muscles tighten and a great inspiration to shout what a condescending dickhead he was. I knew my symptoms weren’t depression. I knew my symptoms weren’t Crohn’s disease. In fact, I didn’t believe I had Crohn’s disease. My intuition negated that diagnosis the minute it was made. In a few more years, I’d receiveΒ  validation that I was right about that one, too.

That inner nagging, the kind that isn’t just a hunch, it actually makes you feel anxious, uneasy, panicky – that is your intuition screaming to get through to you. Your guardian angel may send you signs, but you miss them. Your heavenly guides may try other ways to get through to you, but you’re still not getting it. Then the Divine awakens your inner GPS and when the doctors are telling you turn left, all you hear is turn right and if you don’t turn right you just know you’re going to get lost. So you start to feel anxious. And if you’re unsure of what direction to take next, you’re stuck in a conundrum. You know this doesn’t feel right, but you’re not sure what your other options are. That’s when doubt and fear take hold and say, “Look, you have no proof. Just trust what they say. You need some kind of treatment, and maybe they’re right.”

If your story is anything like mine, the proof will eventually come that the condescending dickheads weren’t right, and you were all along.

Doctor’s oath: First, do no harm. Patients oath: First, trust your intuition.

 

The Yuppie Flu

My first exposure to Epstein Barr was when my friend’s older sister became very sick. It took a while to find someone who could help her. This was the first time I heard of an integrative doctor. It was 1987, and so many people were ill with this virus, especially professional women with demanding jobs, it was dubbed “the yuppie flu.” It made a brief flash in the news, and then scientists dismissed it as probably psychosomatic and it wasn’t heard of again.

The public may have seen it brushed off, but that didn’t make it go away. I watched my friend’s sister whittle down to emaciation, too tired to leave her bed. A stunning girl who had been life of the party was now in a perpetual bad mood, easily angered. I remember sitting in the back of her BMW, she grumpily driving us license-less kids someplace. She pulled out of the garage, her bony hands turning the wheel. She sighed, her words thick with frustration as she said she felt like “a dirty dish rag.” I was around twelve at the time, imagining what that must feel like. I had experienced fatigue and brain fog since childhood, and mornings were most difficult. But it wasn’t debilitating. Not at that time.

I asked my friend what was her sister doing to get better? Taking Centrum vitamins, she said. And she was on a special diet and medications treating a Candida infection, too. She received intravenous vitamin treatments. I don’t remember what else. What I do remember is that she got better. She was cured. She went on to marry her college sweetheart, birth three sons, and had enough energy to be a very involved, hands-on, fun, stay-at-home mother. The kind who volunteers to dress up in silly rental costumes for special events at her kid’s school. Her angry self had disappeared with the virus. She was now all smiles, a vibrant, sunny wife and mother who clearly enjoyed life.

Fifteen years later, I was a young professional with a demanding work schedule, and the annoying fatigue that plagued me throughout college was no longer alleviated with caffeine. I suspected I had the Epstein Barr Virus and it was responsible for the exhausting chronic flu that was wiping me out. My career was slowly slipping through my fingers as I was increasingly finding it difficult to get to work, and do my job. When I asked my primary care doctor to test me for the virus, he shrugged as if it was inconsequential, but agreed so I’d stop pestering him. His reaction shocked me more than the results.

Where Does The Time Go?

This is the one million dollar question for Mr. Epstein Barr Virus. It would take me a while to explain the physiological reasons this nasty virus is zapping away my time by using up my energy. Here’s the every day answer:

  1. Trying to sleep.
  2. Sleeping.
  3. Staring off into “zombie zone” while your brain’s computer program is frozen.
  4. Thinking about everything you want, and need to do.
  5. Thinking how frustrated you feel about everything you’re not getting done.
  6. Effort made getting up. Effort made sitting down. Effort made breathing.
  7. On a good day, dishes get done. This task takes much longer than usual because your body feels heavy, as if matted with thick, dried mud. Your reflexes are off, so you’re more prone to dropping something. And in Zombie Zone, you forget where things go.
  8. Cleaning up messes and nursing cuts and bruises from dropping things, tripping, stumbling, doing anything other than sitting or lying down.
  9. Watching TV. Either escaping into a happily ever after, or feeling reassured that you’re not the only one dealing with enormous amounts of stress.
  10. Thinking about taking a shower. Visualizing it. Telling yourself you can do it. But the amount of energy it takes to undress, deal with the whole process of bathing, is too exhausting. So you remain in your pajamas, again.
  11. Asking yourself, am I depressed? I don’t feel depressed. I want to live! I want to get up and dance, drive, see my friends and family, work, CREATE! No, I am not a depressed person. I am depressed about my body not working for me. That it won’t listen to me, won’t obey my commands to MOVE! But I don’t let that stop me from doing whatever I can each day to appreciate this life I’m given and the opportunities to heal.
  12. Remembering all the things you used to do, how capable and physically strong you were. Reinforcing those memories so you don’t forget who you really are and what’s possible again. This illness is not my true self, it is a health hijacker.
  13. Crying, secretively, on those days when you feel so fed up in the cage that is your body, you want to scream. But you don’t have the energy. So you weep, quietly if someone is home, loudly if you’re alone. And you get that shit out so you can wipe your nose and move on with this healing business because it is hard work. And you can’t spend your days crying about it or you’ll defeat yourself. So let it out, cry your freaking eyes out, and then bravely face this day.
  14. Talking to loved ones on the phone, reassuring them you’re getting answers and doing everything you can to get better. Being extra mindful not to complain too much about your lot, not to feel sorry for yourself. You want them to know your spirit’s got this. No matter how much your mind checks out on you, your spirit will continue to fight the battle.
  15. Fantasizing about all of the things you will accomplish when you feel better. Working out again and feeling strong and free in your body! Being able to tolerate more foods (God willing!). Travel, oh all the place you’ll go! Expanding your work hours and feeling part of the community again! Engaging in your favorite hobbies; that half finished creative project finally gets done! Waking up feeling refreshed and being in awe how liberating having a running motor is again – you can drive anywhere you want, get the house sparkly clean, go for a super long nature walk! YOU ARE FREE.

So that’s where the time goes. Getting through the night, fighting to rise in the morning, donating hours of time to planning, visualizing, hoping, praying because doing, for now, is limited. Emphasis on for now. The best thing about having a crappy present moment is all present moments are temporary.