I have Lyme. I’d like to not have it anymore. I also just want cake.
So, coping. Coping… copinggg… is it just me or the more you stare at that word the weirder it becomes? Coping. Coping? It has now become some verb to me referring to a cliché move by a police officer. “Dude pulled me over and was totally in love with his own power, like, he was really coping it up”. I’m probably the only one thinking this because the more I look at the word the more I pronounce the beginning as “cop”. Okay this has become completely derailed. Back to coping. Where you cope. With things. Usually hard things. Usually when life has you caught in a dark and scary corner and you’re small helpless animal snarling as your beady little eyes stare off into space with the sobering realization you are trapped in this horrible predicament yet your instinctual little claws still take their swipes at life.
I can be dramatic.
Prior to Lyme I coped with the stresses of life in many different ways. I liked to use food. Particularly things like In-N-Out Burger and baking. Baking… can we just all think about that for a moment? Not the act. The result. I can smell the chocolate peanut butter cookies right now. *die*. I also coped by going to the gym. Nothing beat out my stress better than power cleaning a barbell stacked with plates straight off the floor and onto my person. Ahh… can we all just take a moment and think about the awesome smell of sweat and iron in the morning? This doesn’t do it for you? No? Just me then. Ok. I also coped with life’s stresses through yoga. Not soccer mom yoga (please no offense) with cute clothes from Lululemon and an equally cute yoga mat and water bottle, but like power yoga. Upside down yoga. Contorted yoga that broke you out into a sweat without a bikram room temperature. Or laughing… coping tool numero uno. But guess what Lyme did? IT TOOK AWAY ALL MY NORMAL LIFE COPING TOOLS. I even had to alter or stifle my laugh to avoid symptom triggers. Lyme threw me into a corner and… there were claws for a while.
Until you get all of that sorted out again, re-routed, and new coping tools acquired, life becomes bleak. I think it is a transition we all go through as Lyme patients. Some struggle longer than others and I pass no judgement upon them. It is a really hard thing to do on top of the dizzying amount of other hard things Lyme does to you, requires of you, and takes from you. You really go through a deep sort of grief and loss when you become sick. To deny yourself the mental and emotional processes that occur with the intrusion of this disease would be unhealthy I believe. Allow them to happen, give them some time and space in your day.
“Heaven help me this process is never going to end” – Tara
And then put away the kleenex, or get out of bed, or stop starting blankly at a wall or out the window, and decide how you want to try to approach your illness. This is where coping strategies come in to play. We all need them. Yours may be different from mine, but I will share a few of mine anyways. This will not be in full journalistic fashion. I feel like being a bit ridiculous today.
Luckily for me, the hubs has been my rock. My parents have been my rock. I have a mother and a brother who was super influential in getting me to see Dr. J in the first place – cuz’ I was having none of that when it was first mentioned. My family never believed I was making up symptoms or that I was following advice from a quack. I know many of you don’t have that kind of support. I talk to many of you. It pains me you have to deal with that. But find one family member – mother, father, sister, brother, aunt, grandmother… whatever – who believes you and stands by you, and cling to that person. You just need one. Make that person your person (Grey’s Anatomy reference, sorry. I’m like 10 seasons deep in to that show on Netflix right now and everyone in this house is having to deal with its ongoing and perpetual episodes). D not only cooked when I couldn’t, did laundry and chores for well over a year while working 10-hour days to pay for my treatment, but he also sat with me at night and made sure I wasn’t going to kill myself with a mindless mistake on my IV infusions and was the best PICC line dressing changer despite being completely grossed out by all of it. My mother lived with me for six months so I wouldn’t be alone during the day. She lives in Michigan. I live in Utah. That was a sacrifice for her. When she went home my father came out. They traded spaces. He worked remotely on his laptop from my dining room table while taking care of me. You can cope with so much as long as you have family in the hole with you… as long as you have even one person in the hole with you. Love and support can rally you even when your drooping under the weight of the evil Lyme.
D and I sharing opposite ends of the same couch. For hours. Because the couch was my hole. And he stayed in it with me.
Dad couldn’t go an hour without coming over to make sure I was alright during the day. I’m sure I always just mumbled something in return. He kept doing it though. Because family.
Look at her, all knitting away while I’m being mocked. I love it.
My mom and I made a celery man for D, who is completely repulsed by celery and will run from it at all costs. This amused me because it did not amuse him.
Sometimes family makes you laugh without even trying. FYI you have to click on some of these images to read the text, the internet would not let me input these images in any possible readable way. Second FYI for those who lag a little in pop culture, Dubsmash is where you can lip-synch over various movie quotes or songs or whatever. I thought mine was quite funny. His indifference to many of my silliness makes me laugh. He doesn’t even know it helps me cope.
A Friend. A “Lyme Friend”
I spent a lot of time on the couch with my phone texting family and friends to get me through the day. Texting about things and nothings. But at least one in your top five must have Lyme disease too. There is something special about the solace of being understood. Family members believe and support, provide care and unconditional love. But finding a friend(s) who understands you and your experience is so important. Us Lyme patients experience a myriad of bizarre, extremely uncomfortable, frightening, and at times barbaric symptoms that human language frequently fails to describe. Knowing another person on the planet who is sharing the same experience is beyond cathartic and gives you strength and encouragement to press forward – and they don’t even have to physically say it – it’s just their presence in your life. For several months I did not have this. I knew no one else with Lyme. I got a PICC line without anyone to give me advice on it, I underwent several months of IV antibiotic treatment and herxing without it. I was the lone sick person in my world. Then my local Lyme support group referred a woman to me who was considering seeing my same doctor. We met and became friends and I was able to be that person for her that I wished I had when I was getting ready to have a central line inserted and aggressive treatment started. We texted throughout treatments and checked in on each other. Soon she became a support to me. We visit and share experiences. Through my local Lyme support group I have met a few others whose simple presence geographically near me is a comfort. Yay for support groups! Hi, my name is Tara, and I have Lyme.
About six months in to my treatment my now best Lymie friend sent me a message from the other side of the world after recently becoming diagnosed. She is a crazy internet info ninja and found me and now almost a year later we are still very close. There were many months in our friendship where we communicated every single day. She is my non-familial person. She is the one person currently on this planet that I can freely share any and everything bodily related with and we can laugh about it and help each other through it. We’ve swapped supplements and detox strategies and encouraged each other through really bad days. But most of all, we’ve learned to laugh in spite of the disease. Find yourself a person who you can laugh over this with. You need to laugh. Your body needs to laugh.
This is my Lyme person. We send each other pics of ourselves feeling bad. Sometimes we reply to each other’s messages about feeling sick by making faces. It makes our predicament seem less awful. It helps us to not take ourselves so seriously. Yeah you’re heart is pounding and you’ve got a fever for the 97th time or your back is aching. What’s new. That’s basically us. And it’s coping.
Probably one of my favorite parts of our friendship is that we laugh about our illness. We have contests about whose stomach is more bloated and we give each other a place to share the gritty-not-so-pretty aspects of living with Lyme, and in humorous ways. Laughing also releases those feel-good endorphins. Treat it like a supplement. Endorphins er’day.
There is no embarrassment between us. We listen to each other’s bad days and then we make each other laugh. That’s what you need in a Lyme friend. Don’t look for someone who will sit in the mud with you. Find someone who will climb out of it with you. Oh, we also went through a serious Dubsmash phase. I’ll spare you those. Because, reasons. Moving on.
New Hobbies (or old ones you put aside at some point in the past because life happened)
You have Lyme. Ergo, you have a lot of downtime. Find something you can do to pass the time and alleviate your brain from the dark and anxious thoughts Lyme dredges you with. Really, find something you can do. Allow yourself a few hours of moping if need be. But don’t stay in it. It will turn you into a cynical, depressed, hopeless being that everyone will struggle to be around. And if you think that sentence sounds like you have to do it for them, you’re wrong. You’re doing this for you. So you can cope. So you can find joy in the little things again. So you don’t push away your support system. So you can survive this illness. I love to draw. I love to write. For a long time while sick I couldn’t write or read for that matter. I couldn’t even start this blog until a year and a half into my illness, and eight months into my IV antibiotic treatment. But I could still draw. So I did. Because of Lyme I had the time to practice and improve my drawing skills. Plus it gave me a way to zone out completely and forget about my disease. Find a way to zone out, your soul needs it.
Nothing beats the furry things we cuddle with. I’m not sure what it is… the unconditional love? Having a love object who can’t escape your squeezes? Mine is my Sammy. He loves to cuddle. He loves to love. He has this tender little personality and his back of the head is beyond adorable and his little bum is too much for me to handle without just screaming or something. Petting and cuddling our pets is proven to lower blood pressure, releases endorphins, particularly oxytocin, which have a calming effect on the brain and body. Um, get me some of that. Interaction with pets have also been proven to diminish the perception of pain, lift depression, decrease feelings of isolation, reduce boredom, lower anxiety, reduce loneliness, and will encourage a person to move more, stretch farther, and exercise more. You want to know the first time I did anything physically active since I got sick? Sammy started racing around the basement and I started chasing him. I laughed at him and myself and we played and it made me happy. He encouraged me to get off the couch, push myself, and ultimately realize I could do more than I thought I could do. He is my animal soul mate.
I can’t. I just can’t.
Lastly, Getting Out of the House
I know you’re sick. I know you can hardly make the trip from your bed to the bathroom most days. But on days you think you might be able to survive it, get out of the house. Get some fresh air. Do something the old you would have done. Within reason. Once I was able, getting out was one of the biggest things that kept D and I sane. You are sick, but you aren’t dead. Getting outdoors, whether it’s just a walk or it’s a day trip or even just going out to dinner, clears the mind for a bit. It gives you a break from your illness. You need that.
D and I walking a trail. I was exhausted, in pain, and completely out of breath… but I wasn’t on the couch! And honestly, many times we are going to either have those symptoms in a stuffy house or have them doing something better elsewhere, so if you can do it, do it.
Overlooking the North Rim of the Grand Canyon on a cloudy, cold, rainy day. But I was in heaven. Views of this beautiful planet on all sides. Thoughts of Lyme nowhere in sight.
Bottom line, you are sick. You are going to be sick for a very long time. You really have to allow a paradigm shift to happen in your world and adopt new ways of experiencing your day and enduring your current circumstances. The alternative is you resembling what my little hanging basket of flowers looks like right now out in the backyard – burnt to a crisp by the burning rays of the sun (it’s not my fault, I watered the thing constantly. Its thirst was more than I anticipated. Plus our sun is like, really hot here up in the high altitude GUYS IT’S NOT MY FAULT IT DIED). Lyme will wither you if you let it. I’ve seen it. It makes your face permanently sad with eyeballs that hold no hope. You can do it. You can survive it. Just cope. Imagine me with my pom poms now, “Don’t lose hope, you can cope! Don’t lost hope, you can cope!”.
Or not. I was never the cheerleader type anyways. Okay I’m tired of sitting at the computer, I’m going to go eat some leftovers.