Dealing with Lyme disease can be challenging enough based on the complex symptoms alone.
What makes it 10 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 following when you have enough time to let the words register. Really try to enter this world for a moment.
1. 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.
2. You feel like you’re at least 50 years older than you are. You’re slow to get around, you have arthritis from head to toe and you struggle with memory loss. You use one of those jumbo size pill boxes and have at least two kitchen cupboards dedicated to medication and supplements.
3. You feel like you’re on a seaside ship while walking throughout your motionless house.
4. 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.
5. Your head pounds and aches as though it were stuck in a vice.
6. You feel like you’re drunk when you’re sober as can be – clumsy, dizzy and struggling to put sentences together.
7. 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.
8. You have terrible mood swings. You are also sensitive to temperature: hot one minute, shivering the next.
9. Your legs give out from under you without any notice, causing you to drag yourself around the floor like a crab, crawl like a baby or have to be picked up by a loved one (or pushed around in a wheelchair).
10. When you walk, it feels like you’re walking on hard legos, or a beach with sharp stones. Sitting back with your feet up feels as though someone is massaging the back end of a hammer into your soles.
11. The same goes for your hands. It’s this constant, dull, nagging pain that gets sharper with impact or activity.
12. 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.
13. 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.
14. You haven’t had a peaceful night’s sleep in years, and you’ve forgotten what it’s like to wake up feeling refreshed.
15. Your hands and fingers get numb and tingly on a regular basis.
16. The same goes for dizziness. Vertigo follows you wherever you go and gets worse in busy environments.
17. 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.
18. 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.
19. 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.
20. You can’t eat gluten, dairy or sugar. Unfortunately for you, these are foods you crave. All. The. Time.
21. You hate your body – not your physical appearance, but the fact that you can’t escape the afflictions you feel.
22. Some days you want to die because the pain is so bad.
23. 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.
The biggest challenge is that all symptoms “come and go”, one disappears and another appears, so you can’t even describe what exactly is wrong with you.
Please know that none of these examples are exaggerations.
This is a picture into life with chronic Lyme disease.