Lyme Lessons: Part 1

October 31st marked one year since I first started feeling sick.  I thought the chest tightness, back pain and general fatigue and achiness were the beginning of a virus or, at the worst, walking pneumonia.  I waited only two days before seeking medical attention, knowing in my gut that something was very wrong.

I declined rapidly, spent nights in and out of the hospital, and justifiably feared heart failure.  It’s a lot scarier not knowing what is wrong with you than knowing, even if the diagnosis is an incurable disease.  It would be nearly two months before I’d officially be diagnosed with Lyme disease.  I remember the relief my husband and I felt at finally having a name for my illness.  Now, we thought, we’ll be able to get treatment, get well, and get back to our normal lives.

We were so naive.  We had no idea how misunderstood and under-researched Lyme disease is.  We were clueless at the time of its controversy and lack of a universally accepted treatment plan.

Twelve specialists, one Lyme Literate doctor, one family doctor, one homeopath, and multiple nurses.  43 oral prescriptions, two different IV antibiotics, one PICC line, one chest port, and countless supplements.  Twelve months, two relapses, two canes, one wheelchair, five hospitalizations, over $200,000 in medical expenses. That’s the last year in numbers, and even after all that, I’m still sick.  Today is a good day and I am doing better, but I’m no where close to returning to work.  There is no quick fix for Lyme disease.  Heck, there isn’t even a sure fix.

I can’t believe it’s been a year.

Every November, we set up a Thankful Tree in our house, which is just a branch with a few lights on it. Throughout the month, whenever we feel compelled, we write what we are grateful for on a little tag and hang it on the tree.  The topics range from “drafty old houses” to “yoga pants.”  It’s a fun reminder of our blessings.

Around this same time, I also see lots of friends on Facebook participating in the 30 Days of Thanksgiving, posting each day in November one thing for which they are thankful.  In that spirit, this is my gratitude blog.

I have to admit, as shitty as it’s been, in the midst of the pain and tears, the lessons living with Lyme have taught me have been extraordinary and in bulk. I hope you can gain a little something from what I’ve learned without having had to be where I’ve been. Near the anniversary of the onset of my symptoms, I share with you some Lyme lessons.

1) Achieving wellness is not what I thought it was.  I had to let go of our Western world culture’s definition of health.  Sure, there is a time and a place for prescription medication.  After all, without the initial IV antibiotics, I don’t think I’d be here today.  But remember there are numerous paths to wellness.  I tried acupuncture, herbal supplements, essential oils, massage therapy, ozone blood transfusions, and dietary changes.  All played a role in my healing.  Don’t disregard a treatment option just because you aren’t familiar with it.  True wellness requires more than just popping the next pill.  And perhaps the greatest healer is the most overlooked –sleep.

2)  It’s okay to not be okay, but it’s also okay to tell others you are even when you’re not. People will ask you how you’re doing and most want to hear “fine” whether you really are or not.  I call it the Fine Factor.  If I don’t admit to my pain, the individual asking doesn’t have to understand or deal with it.  The fact is, if you have a chronic illness, you’re not okay.  In time, you will learn who really wants to hear the truth.

3)  Bathing unrestricted is such a gift.  Not having to wrap my arm or chest in plastic and tape is amazing.  Being able to completely submerge my body under water in the tub or take a shower without passing out — fabulous.  Don’t take it for granted.

4)  It’s unbelievable what we can accept as the new normal, and children can roll with it even easier than adults.  Izzi doesn’t remember Momma before Lyme.  Gracie does, but she loves having mommy’s undivided attention.  IVs, doctor appointments, my limited energy level –it’s all just part of life now.  While it saddens me that Izzi won’t remember the devoted teacher I once was, it gives me hope that we can adjust and survive as a family.

5) You are replaceable at work, but not at home. I went into my classroom of 15 years last week and although I’m on a leave of absence with a long-term substitute, I have been completely erased. My photos, my books, all personal effects are gone; it’s as if I never existed. Prior to my illness, I devoted at least ten hours a day to that school and my students, yet my dedication turned out to be irrelevant. The lesson here –the hard lesson –is to put your attention, focus and time on what matters. If you can be deleted within weeks, you are not essential. (I was apparently narscisistic enough to believe I really was.) But if I were absent from my home, my children and my husband would never be the same. That’s where my energy should have been all along, focused on the people who actually need me and who would never replace me.

6) For women especially, our hair is an extension of who we are, and when illness, whether it be Lyme or cancer, causes us to lose that, it alters our psyche.  I cut my long, dark hair early in my illness when I could no longer take care of it.  Without it, I felt vulnerable and unattractive, yet my hair has also been a source of the utmost love.  When I couldn’t lift my arms above my head, Izzi was overjoyed to wash my hair for me.  When I couldn’t get out of bed, she’d sit with me and brush what little hair I had left.  Hair itself does not make one beautiful, but it sure helps to make one feel pretty and adored.

7) Hugging is a bounty we don’t even realize we have –until we don’t.  For months, I couldn’t stand physical contact.  It was excruciating.  To not be able to show affection to those you love the most is unnatural.  To hug meant pain, but to not hug was a different kind of hurt.  I couldn’t cuddle my one-year-old nephew; now he’s too mobile to want snuggles.  I couldn’t bear to curl up with my husband.  I worked to tolerate a hug or two from the little ones each day, but I’d pay for it later.  If you are physically able to embrace your loved ones, do so.  Right now and everyday.  There may be no greater treasure.

8)  At times consistency comes in the most unusual package.  For me, it was Harold, my fifty-some-year-old home health nurse with sparkly blue eyes and a gray ponytail who came to my house every Tuesday to clean my PICC line and, eventually, my chest port.  In a world where I didn’t know from day to day what to expect from my traitorous body, it was remarkably reassuring to know that no matter what, Harold would be there to take care of me.  His concern was real.  His pep talks went something like this: “Now stop crying. I feel helpless when a woman cries.”  He made me smile.  And every single visit he said the same line.  You will get better.

9) Gratitude will keep you positive.  Rather than focusing on the ugliness in your life, find the good and be thankful for it.  I stood at a football game two Fridays ago and teared up during the National Anthem.  I thanked God for allowing me to be well enough to be in the stands watching my son play.  How many in the crowd that night actually considered that being healthy enough to attend is a gift not a given?  Be grateful.  Be aware of how blessed you are because for most of us, the blessings drastically outweigh the hardships.

10) Sometimes we have to go through something really hard in order to become who we were meant to be.  I was comfortable in my life before Lyme. Comfortable and complacent.  Now I see that God wants more for me.  My life is spiraling in a new direction, and although sometimes it’s difficult, daily I am learning more and more about living better, practicing gratitude, and finding joy.

It didn’t occur to me that I would wake up sick one day and never get over it. This was not part of the life I’d planned. But having someone who calls you Momma means giving up is not an option, and I might as well try to make some sense out of this.

People say there is a reason for everything. I don’t know exactly what His reasoning is, but instead of being angry and pouty, I choose to find the good in all living with Lyme has taught me.

(This is Part 1 of a three-part series on Lyme Lessons.)

4 thoughts on “Lyme Lessons: Part 1

Add yours

  1. Thank you Jena. This was so thoughtful and insightful! The greatest take-away for me from this disease is, as you said, appreciating good health on the days I have it. Those days feel like such a blessing, never again to be taken for granted.


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