A snippet of a day in the life of a person battling lyme. The symptoms are complex, they change from minute to minute, they come and go in waves like a roller coaster and many are invisible. It is so hard to explain what lyme patients experience. So much happens under the skin that is never seen. The brain fog, fatigue, insomnia, cold hands, numb fingers, stabbing pains, back aches…
Tonight, insomnia continues to haunt me. It has for days! Add pain, itching and irritability to the mix and I am just a barrel of fun. On the flip side of things, I had an awesome day Friday! After about 10 days of feeling pretty horrible, it was nice to have an entire day of “normal”. Lots of adrenaline and a secret mission my mom and I went on (you will find out about it soon!), gave me the fuel I needed to thrive and have an amazing day with my family. My brick wall found me about 6pm Friday night. Just like that, I was knocked off my feet and retreating to my safe spot away from everyone. When the debilitating symptoms become too severe to brush off, I hide.
I stumbled across the following list on TheMighty.com that a fellow Lyme Warrior Kristin Marie wrote. She created a list describing a day in the shoes of a lyme fighter to a healthy person. I can relate to most things on this list and I would assume this would ring true with many people fighting lyme.
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.
Even though I am frustrated that I can’t sleep tonight, I am thankful for the moments of “normal” that are returning to my world. As my treatment takes hold (and makes me sicker at times), it is definitely doing something in my body. According to my doc, the worst of week one should be in the past and now it’s time to fight hard to regain my strength and stamina. Taking things “easy” has NEVER been in my vocabulary. I’m trying my best to listen to my body and not push beyond its current limits. One day at a time, one foot in front of the other, one day closer to healing! Let’s go battling friends. God’s got US.