Tag Archives: Invisible Illness

What It Feels Like to Have Lyme Disease

Dealing with Lyme Disease can be challenging enough based on the complex symptoms alone.

What makes it ten times more challenging, though, is the fact that (for most with Lyme Disease) our symptoms are invisible.

We try to describe what we’re going through, but the words get lost in translation as the hearer sees us as normal, healthy individuals.

How can we be understood? To our friends, the medical community, our own families?

If I were to describe to a healthy person what a day in my shoes feels like, this is along the lines of what I might say.

If you are healthy, and truly want to understand what Lyme Disease is like, I ask you to read the below when you have enough time to let the words register. Really try to enter this world for a moment.

  • Lyme disease – that is, chronic Lyme, also known as late-stage Lyme, or post-treatment Lyme disease – feels like you’re running a marathon – uphill – just to get through the day.
  • You feel like you’re at least fifty years older than you are. You’re slow to get around, you have arthritis from head to toe, and you suffer from memory loss. You use one of those jumbo size pill boxes and have at least two kitchen cupboards dedicated to medication and supplements.
  • You feel like you’re on a seaside ship while walking throughout your motionless house.
  • You have to work twice as hard to concentrate on anything, whether reading words from a book or listening to a friend tell you a story.
  • Your head pounds and aches as though it were stuck in a vise.
  • You feel like you’re drunk when you’re sober as can be – clumsy, dizzy, and struggling to put sentences together.
  • You feel like you gave birth last month, when in reality your baby is over a year old. Your body couldn’t be slower to heal itself.
  • You’re borderline bipolar.
  • Your mood swings match those of a menopausal woman. You are sensitive to temperature, hot one minute, shivering the next.
  • Your legs give out from under you without any notice, and leave you to dragging yourself around the floor like a crab, crawling like a baby, or having to be picked up by a loved one (or pushed around in a wheelchair).
  • When you walk, it feels like you’re walking on hard legos, or a beach with sharp stones. Sitting back with your feet up, it feels as though someone is massaging the back end of a hammer into your soles.
  • The same goes for your hands. It’s this constant, dull, nagging pain that gets sharper with impact or activity.
  • You feel a tightness in your chest, and you hunger for air. You feel like you’re stuck in the middle of the ocean without a raft.
  • There is no such thing as enough sleep or rest. You could lie in bed all day, every day, and still be too tired to move.
  • You haven’t had a peaceful night’s sleep in years, and you’ve forgotten what it’s like to wake up feeling refreshed.
  • Your hands and fingers get numb and tingly on a regular basis.
  • The same goes for dizziness. Vertigo follows you wherever you go, and gets worse in busy environments.
  • You feel like burrowing your face into a hole most days, not wanting to deal with anything or anyone. Not your pain, not your to-do’s, not your errands, and some days not even your own family.
  • Strong odors – or sometimes not even strong ones – make you sick. Your eyes burn, your throat closes up, you get a migraine. You cover your nose with a scarf and hang out by the toilet, waiting for the vomit to come.
  • Your soul needs daylight, but you’re sensitive to light. More than 10 minutes in the sun makes you feel like you’re having a heat stroke.
  • You can’t eat gluten, dairy or sugar. Unfortunately for you, these are foods you crave all. the. time.
  • You hate your body – not your physical appearance, but the fact that you can’t escape the afflictions you feel.
  • Some days, you want to die – not because you’re suicidal, but because the pain is that bad.
  • You feel like you’re crazy. Because as much as all of these things are very real to you, no one else can see them.

Please know that none of these examples are exaggerations.

This is a picture into life with chronic Lyme disease.

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Never Give Up Working With Your Hands

“You look more youthful.” The words hit me with surprise. 

Here I was, gripping a beast of a camera, one on loan from a good friend. I wanted to cry with the pain its weight brought to my arthritic fingers and wrists. But instead, I beamed with happiness. A youthful sort of happiness, as my husband pointed out. Continue reading

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A New Year’s Letter to My Decade-Younger Self

Dear Self,

You think it’s pretty crazy that it’s already two-thousand-and-seven, don’t you? You wish you could have accomplished more in this last year, but you’re sitting down with pen and paper, eager to write out a full list of all the amazing things you want to accomplish in the new year.

After an hour of journaling right before bed, your hand writing at awkward angles as you use your pillow for a desk, you come up with something like this.
Continue reading

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WHAT WOULD YOU DO TO SEE YOUR LOVED ONE BETTER?

What would you do to see your loved one better? How would you feel if you found out your wife had a serious chronic illness a few short years into married life? You’d see her in constant pain, but not be able to do anything about it.

What would you do? When you can’t afford the treatment required? When you wake up every morning to the face of someone who is ill? Continue reading

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So Let’s talk about symptoms

I have chronic Lyme disease, but I also have several Lyme co-infections and numerous other health complications because of these.

Because of the complexities of Lyme disease, and my own complex situation in particular, I tend to be rather vague when writing about my illness. There are so many topics to be covered, a vast number of subcategories within the category of Lyme disease.  Continue reading

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On Turning 30

I’m feeling older than I did a year ago. My body is less forgiving of simple, basic movements –turning to check my blind spot, putting my toddler into the baby carrier, standing on my feet for more than a minute…

I find myself quoting the words of King David: “How long, O Lord…?” Continue reading

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Change is in the air

The green tree leaves are changing to vibrant red hues. The air is crisp. (I could see my breath the other day.) As the sunny skies turn gray here in the Pacific Northwest, my mind turns to the changes ahead. With these atmospheric changes, there are changes in my health. Continue reading

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Illusions

Apparently, I don’t have enough challenges in my life. For some crazy reason, I decided I needed to do a book study [insert surprise emoji here]. The other night, I struggled to read through a sixteen-page chapter. I lost track of how many times I had to re-start. The black words appeared gray to me, Continue reading

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