I have Lyme. I’d like to not have it anymore. I also just want cake.
I can get lost in Instagram. Can you? I don’t know why. It’s just so many windows into so many lives. I can get lost so easily in other people’s lives. Maybe because I have always been a people-watcher… and Instagram is like crack for people-watchers. Anyways. I was on Instagram today and clicked on some lyme-related hashtag of mine I used on an old upload just to see what other like-minded folks were using it for today. You guys are really suffering. You guys are really looking for outlets to express your pain. You all want understanding and validation. You want the world to know you feel forgotten. Most of all, you feel stuck in your illness… trapped as if someone threw you under a thick, suffocating tarp and sealed all it’s edges. You can’t stand up straight because the tarp holds you down. It’s dark in your little world and you can’t see your way out. A lot of you express hope, but I sense it is because you feel you have to. It’s your survival instincts… but I wonder if you really believe it?
A lot of you are funny. You express your pain in humorous ways. A lot of you are sentimental and express your discomfort through quotes in fancy script on a pretty background. I wanted to share a few posts I saw today under my lyme-related hashtag. A glimpse into the Lyme-lives of others.
This is one that immediately resonated with me. I don’t get the seashells background… but I’ve said this so many times. I’ve said it to myself so many times. I’ve told family members I’ve wanted to die so many times. I think this is one of the ways Lyme becomes incomprehensible to those who don’t have it. What kind of suffering would make you cry out for death? Before Lyme a phrase like that would conjure up images of prison camps and military torture and other inhumane experiences that I have absolutely no comprehension of. But to the sweet girl who posted her thoughts on a background of pretty seashells… yes, I believe you. Feeling like death, wishing for death, fantasizing about not being inside your body anymore – all are fibers so interwoven into the Lyme experience. Lyme is discomfort and torture that truly has the power to rob you of your future ambitions and willingly toss them aside in favor of death.
To the poster who wanted to express their pain today. We don’t want to be the center of attention. We just don’t understand sometimes how the world can continue to go on and on while every day we experience pain like it’s normal. It’s not normal. It becomes normal to those we know. But pain never ceases to be pain. Back pain yesterday doesn’t get easier today. Pain is always an acute feeling. Sometimes you guys forget that. Sometimes we just hide it. But sometimes, we just want you to know hey, this hurts today. I’m sick of it hurting. We want the universe to care. I think we post these things because there is some need inside to find alleviation, and when the pain doesn’t stop our souls start spamming the world with our pain. Is there alleviation? I’m not sure. Again, pain and Lyme. Interwoven fabric that begs the full attention of its victim, and robs them of thoughts of brighter days.
This one made me laugh. I hope it makes you laugh too. Lyme comes with many other more… personal challenges. Everyday things that you do and then go on living and never thinking about. And when you come to us and complain about trivial (to us) challenges such as your tired or got a cold or got a bad grade on a test or whatever normal human first world problems that plague the psyche of the blessed… we just don’t have time for it. I love this poster. She clearly has struggles, but has found a way to use humor. She’ll be okay, this one.
I’ve been here. I’ve made beds on the bathroom floor, under the dining room table, on the mat on the kitchen floor by the stove… Lyme fatigue is not even fatigue. Fatigue is like, such a mild word for Lyme fatigue. Lyme fatigue doesn’t end with sleep. You can’t fix it with a nap. Shoot, you can’t even fix it with laying down. But you have no other choice. Imagine all the things I could do if taking a shower didn’t use up all my energy for the day. Just… imagine…
Speaking of fatigue. I feel like normal people will look at this picture posted by a sweet girl who is obviously having a hard day and think it sounds kind of… whiny? Kind of like, “well stop trying to act then”, or “stop being a martyr” or whatever. But, having Lyme really puts us in a tough spot, guys. If we are bedridden we’ve already lost most of our life. We salvage what little we have left by not alienating family members or the few friends who visit us by complaining about our sad lot. We try to be strong because we want to be. Again, survival instinct. If we can function enough to half-way participate in life we have to hide a lot of symptoms. Why? Because if not, we will walk around with the label of “sick person” and then no one will interact with us normally. It will only be “how are you feeling” or “is today a good day or a bad day” or “can I do something for you” or “is this something you can do with us?” kind of interactions. And all we want is normal. We are trying our best to hang on to normal. You can’t blame us for that. But that being said, doing those things does not eliminate the illness, the symptoms, the pain and discomfort. And one of the hardest things about Lyme is carrying that burden day in and day out for months and even years. It’s incomprehensible. I have Lyme, I have been doing this for two years, and I can’t even comprehend it. I was asked the other day what has been the hardest thing to deal with, and I burst like the hoover dam as I explained it has been carrying around this illness for so long. I can’t explain the fatigue of trying to mentally and emotionally live a life while simultaneously dealing with the deficits and disorders my body has been given by Lyme. It’s loneliness in a most unique form. It’s a chronic illness unto itself.
Some people share their stories by uploading experiences or snapshots of moments in time that Lyme has given them. This woman is preparing for surgery because something is wrong with her kidneys now. You can see the scar on her chest from a port she once had to infuse IV antibiotics straight into her heart. Now she will have another scar. We all have scars. Lyme has given me five scars from Lyme-related surgery and PICC lines to infuse my own IV antibiotics straight into my heart. Most people think Lyme and immediately imagine a bull’s eye rash or something a bit more benign. Those of us with Lyme want to change that. Real lyme is IV lines and chest tubes and wires everywhere and hospital gowns and blood pressure cuffs and ER visits. It’s bustling nurses around your bedside and machines being wheeled into your room. At times it can be medical chaos. We like to tout that Lyme is war, and that’s not just something we say in support group fashion to make us feel strong. It really is war. My friend Sonya, I love her metaphors… she told me the other day her body feels like Baghdad. This is Lyme guys. Not bull’s eye rashes. This is the Lyme experience.
I saw this post and had to immediately screenshot it. It’s so true. Lyme is also a masquerader of hundreds of different diseases. We all experience it differently. Our symptoms may be different, but it’s the same game. Same war. Today my devils are numbness and tingling in my left hand and pressure in my head. Probably fatigue too. Oh and internal vibration feely thingies. Anyways. Shout out to LiveLaughLyme for posting this one.
Sometimes Lyme is chaos. And sometimes Lyme is boredom. I loved this picture because I’ve posted dozens like it. The hum-drum and grudge work of weeks and months on end of treatment. Of hanging your IV pole. Of sitting around for hours while drugs infuse. Of finding ways to keep occupied in-between the moments of chaos. This picture is also Lyme. At one end of that tubing is a bag of medication likely mixed in saline solution. On the other end is a person who has scars. Who suffers. Who is fighting. Who has been fighting. Who has overcome fears and accepted changes to her life she never thought she would have to. I don’t know this person, I don’t even know what this person looks like, but I feel a kinship with them. All because of a view I’ve stared at hundreds of times – my IV tubing, my blanket, and my phone.
Some express themselves through art. I met a girl named Camille who was recently diagnosed with Lyme after searching for a diagnosis to her health issues for a while – a similar story we’ve all experienced. She’s beautiful and deep and creative. She posted this on Facebook shortly after her diagnosis. It’s bright and colorful but it is also dark and her grief is palpable. I feel every Lyme patient will experience their own connection and interpretation of this piece of art. By the way, Camille sells her art to pay for her Lyme treatment. If you are interesting use my Contact Me tab and I’ll put you in touch!
These are all uploads of somebody’s story. These are all people who, today, posted about their pain in their own individual way. People who posted about the heavy tarp blanketing their lives with the suppression of current and future hopes and dreams. Lyme has a really uncanny way of making you feel as if this is your fate. As if you will never be free from these chains or never find your way out from under this tarp. However, I also noticed a sparkly post on Instagram that caught my eye. I immediately became inspired to share, and it became the whole point of this post. The eventual conclusion I wanted to make. I believe it is the real story of Lyme. It was simply a gold, sparkly, semicolon. Yes, Lyme interrupts your life story. Yes, Lyme also robs you of life. Yes, Lyme is a pause button pressed on a moment of pain and suffering and fear for an extended period of time. It stays paused for a while… long enough to start eating away at what you intended to write in your story after. But you will write your story after. You will return to finish the sentence. Lyme isn’t the sum of your story. It’s simply a punctuation mark.
I also love that this semicolon is so pretty. The Lyme experience can also be a beautiful thing, for those who allow it to be.
It’s almost lunch and I still need to eat breakfast. I hate making breakfast. Am I well enough that I have permission to complain about first world problems yet? I’m not sure. I’ll think on that.