I lay here, sleepless, going on hour 4 of restlessness, in pain, the night before I walk across a stage in front of a thousand people to receive my high school diploma.
And all I can seem to think about is the pain in my feet, in my shins, my calves, my knees, my stomach, my back, my arms, my hands, my neck and my head. But I can’t seem to sleep it off. Pain medicine helps to dull the pain, but it doesn’t wipe it out.
Chronic Lyme isn’t fun. It’s destructive, confusing, seemingly unending, and constantly changing. Chronic Lyme is serious, scary, mysterious and painful. It’s mentally and physically painful, life threatening, unexplainable and chaotic.
Though chronic Lyme has taught me many life lesson thus far, there are several things that I’ve learned about the disease itself. These may be difficult for the average person to wrap their head around, but it’s the reality and fellow Lymies will understand.
So the story begins…
- These sleeplessness nights are hard to combat. Once the pain jolts you awake at 2 a.m., you can’t really do anything about it. Your body has been awoken by a feeling of pressure, stabbing, crushing, swelling, burning, aching or all of the above (plus others that are hard to describe). You can’t move, but you want to. You want to be productive now that you’re awake, but all you can do is lay there in agony. Now maybe the pain is subsiding because you took some pain meds, but you’ve become anxious and you’re scared to fall back to sleep because you don’t want to wake up in tears, yelling for help. Your mind decides to start running laps, it’ll probably try to run a marathon sooner or later, and you do your very best to slow it down, to shut it off, to go back to sleep. Essential oils, natural sleeping remedies, meditation, soothing music, a back rub… nothing seems to help. So, you turn on Netflix and you lay there until your body shuts off and says you can go to sleep. The next thing you know, it’s noon the next day.
- It’s noon the next day, and you’ve slept through a doctors appointment, coffee with a friend, and an important phone call. You feel unreliable. You feel defeated because you can’t seem to keep plans, make appointments or be productive. You are sick and it’s hard to explain to people that sometimes your health comes first (a.k.a the date with your bed, Netflix and a cup of peppermint tea at 4 p.m.). You let people down and you’re just so tired after putting all of your clean clothes away that there is ZERO chance you’re doing anything else for the rest of the day. Time to call the friend who said they were going to pick you up and bring you to dinner and tell that friend that you’re too tired to do anything. This is the third time you’ve cancelled. Chances are, they’re going to say “Oh! That’s not a problem, we’ll do it another time! Let me know if you need anything.<3” But really, they judge you for not being social, they don’t have any clue what you’re going through and they don’t seem to understand what a chronic illness is. And that’s the last time they call you to go to dinner.
- If you were to have gone out to dinner with that friend, you probably wouldn’t have been able to eat much besides a glass of water and maybe some chips or french fries (as long as they’re gluten free). You feel nauseous. Your meds make your stomach all weird, but Lyme does that too. It makes you feel like you’ve got the flu. You’re not only nauseous, you’re gluten free, dairy free and possibly sugar free. You avoid processed foods and grease. If you plan on getting better any time soon, whatever you put into your body better be the best of the best. Organic and natural foods is what you eat, but even that stuff still makes you nauseous. Maybe you feel nauseous when you just think about chewing something. Certain foods make you nauseous and strong flavors aren’t always a good thing. Ya know, chicken and rice soup is always a good remedy. People judge you because you don’t eat all of the time, they think you have an eating disorder, or they think you’re just crazy. They’ll also judge you if you pull out your organic, all natural, gluten free, vegan granola bar. They’ll say “don’t you miss eating normal stuff?” or “that looks so gross.” or “I feel so bad for you that you have to eat all of that crap!” You just keep to yourself and remember to eat your granola bar before you go out in public.
- No matter how long you’ve been sick for or how long you’ve been going through treatment, nobody will understand the pattern (or lack thereof) of chronic Lyme, except your fellow Lymies. You have good days, bad days, and normal days. Your good days are when you want to try to be social, you want to talk to your friends again, you want to see reality again. Your bad days are stay-in-bed-all-day days, sleep, cry, sleep, watch a show, sleep, try to eat, drink water, sleep. Your normal days are watch Netflix, maybe eat some more, maybe move around a little, try to get blood flowing, dealing with the pain the best you can, and maybe make it to the store with your mom for an hour or two before your body is yelling ,”I NEED A BED!!” You could explain to your friends that these days fluctuate, they change, they are unpredictable, but why bother. You’ve done it once, why waste the little energy and mental sanity you have on friends that aren’t going to get it. You resort to talking to your online friends via Facebook Messenger about random stuff, which always happens to include ‘today’s symptoms’. They get you, they understand, even if your symptoms are different, more likely than not, they deal with the situation similarly.
- You tried explaining your disease to someone, it didn’t go well, they got confused so you got frustrated. You stop talking and leave the conversation at, “I’m sorry for not being around anymore, but my health comes first.” You toss your phone away from you and lay down. You gasp for air, because that’s what air hunger does to you, and sigh out a breath of “what have I gotten myself into?!” You realize that you’re feeling overwhelmed. You don’t know why, but all of a sudden you’re worrying about everything, you can’t seem to wrap your head around simple concepts and you’re scared that the sky is falling. You start to feel pain at a more intense, increased rate and you’re beginning to feel hopeless. Your anxiety has made a grand entrance. You realize that it’s anxiety. You do your 4-7-8 breathing to calm down. This isn’t uncommon. You know what to do, but it seems so hard when you feel like everything is about to go wrong. You have anxiety in social situations; your hands get clammy, your face turns red, your back feels damp and you feel disoriented. You have anxiety about doctors appointments; you’re scared you will start a new protocol and you’ll have a really bad herx reaction and you’ll be laid up in bed for days. You have anxiety about your emotions; you don’t know what to feel, you’re sad, you’re frustrated, you’re grateful, you’re appreciative, you’re in pain, you’re lost, you’re confused, you feel alone. Your anxiety doesn’t stop there… you get random anxiety attacks frequently, but you keep them on the DL because you don’t need your family worrying even more. You realize that it’s not just Lyme victims that experience anxiety, so sometimes you connect to people over anxiety, and you’ve also realized that that may possibly be the most depressing connection to make, but then you’re grateful that somebody understand at least one part of you.
Here ends the story.
The list of things that we Lyme victims experience goes on, but this post would be much, much longer if I kept going. Those 5 things are part of the reality that I, and many other people live on a daily basis.
To my fellow Lymies, and anyone else who is struggling mentally or physically, keep going. We’ve got this. We’ve got each other to get through the struggles, the triumphs and the everyday things. It’s important to remember your beauty, your importance, and your value. Remind yourself that you deserve just as much as the ex-friend who hasn’t called in 5 months. Remind yourself that you are beautiful. You have a soul of gold and it is precious. Take care of yourself and value yourself. Don’t beat yourself up over anxiety or emotional breakdowns. We all experience hurt and pain, that’s how we relate. But, just because we relate that way, doesn’t mean we need to dwell on it. Focus on the love and light in the world, despite the hurt and darkness. We have so much to live for. Keep dreaming and be proud of every good day, stay strong through every bad day, and find peace and comfort on every normal day. Do your best to remain positive.
To everyone else, be respectful. Be open. Be kind. Be loving. Share your light. We all experience hurt and pain, that’s how we relate; so honor that relation. Remind us that there is hope, be understanding. Pick us up if we feel down, and go with us when we feel strong. Don’t act better than us, don’t act more successful. You may be doing better at the whole life thing, but that doesn’t mean we won’t catch up. Show us how to have fun, but be gentle. Value us and be supportive. Don’t give up on us, because we haven’t given up on you, it’s just there’s a giant lack of energy that is a huge obstacle to over come. Pray for us, pray for yourself. Remember to be beautiful. You have a soul of gold, take care of yourself. Know that you are precious and you deserve love and happiness. If you get hurt or you feel sad, remember the power that you held before that. Do your best to regain that power. Inspire and do good. Participate in life and learn.
“She is tossed by the waves, but does not sink.”