Let me just start out by saying that this is an EXTREMELY difficult post for me to write and possibly even harder post for me to publish. This isn’t the type of post I like to write or want to write. I’ve been told I “sugar-coat” my updates too often…so this is one that isn’t going to be “sugar-coated”. It involves being very real, very blunt and very graphic. I’ve avoided writing a post on this topic on purpose. Its painful to write about things that hurt…but I think it’s necessary. Why? Well, one of the reasons is because I’ve heard from SO many people that reading my posts is like I’m telling their story & what they experience…only they don’t know how to write it or can’t. I write for them. Another reason is to help people who don’t have Lyme understand what it’s like so they can better encourage and support their friends/loved ones. I write for them. And the last reason is because I don’t want to forget these moments of intense fighting….and I know I will. I’ve talked to people who are now Lyme-Free who don’t remember the hard years of fighting unless a family member reminds them. And they’ve told me to write about it….in case someday I too, forget. Sometimes intense physical pain is blocked from one’s memory…and I think this is a good thing. I wouldn’t mind forgetting honestly…but I do think there is a reason God is having me document my story. And the best way is writing about it when it’s fresh…especially in case I forget someday.
Ugh! Okay…LOL…I’m already starting to cry before I write this post. It brings with it so many emotions to the surface…deep ones.
Tonight was another RUDE awakening of how real this fight with Lyme still is. One minute I’m TOTALLY fine juicing up a delicious honey-dew/lime electrolyte drink and the next I’m shaking so bad I can’t stop, gasping for air with the sensation like I’m suffocating, vision going in and out, body completely limp, heart racing a million miles a second (SUPER uncomfortable feeling), the pain….ugh….can’t even begin to know where or how to describe it. Every part of my body is shaking. It hits suddenly and slowly. Suddenly because it LITERALLY feels like an “on” switch to feeling good just got turned “off”. Slowly the “energy light” of my body flickers off over a 1-2, maybe 5 minute period. I know instinctively to get to a couch and lay down IMMEDIATELY before the “light” flickers off completely and walking is no longer an option. The confusion…the dizziness…trying to calm the panicking feeling inside of me…focusing on Jesus and His Scriptures as much as possible. It’s like a downward spiral that feels like it lasts ages. It feels like I’m dying…I know that sounds horrible but I don’t know any other way of saying it other then it feels like my body is literally shutting down. Today the intense part probably only lasted 10 minutes total….but in the past it’s been an upwards of days… I feel like screaming….yelling…crying…but I rarely, if ever cry. Too much energy. Sometimes the tears quietly trickle down…but crying seems to make it even worse so I avoid that whenever I can. And I don’t scream or yell…even though the pain makes me feel like I could. It’s a terrifying experience to say the least. I call them “Lyme Attacks” or “Lyme Seizures”. This is VERY common among people with late-stage Lyme Disease. When it passes I slowly feel a release of symptoms. If I try to get up and walk it’s more of a limp than a walk and I usually have to hold on to things. My balance is majorly thrown off and I usually don’t feel too safe walking unless I have someone to lean on. It’s just crazy to me that an hour before I was so strong and even contemplating trying to do another mile walk…..and then hardly even being able to stand one short hour later. It’s in those moments that can be scary and frustrating and hard and lonely and debilitating and painful and long and seemingly never-ending that Jesus is there. <3 He’s there in SUCH a real way. “NEVER will I leave you. NEVER will I forsake you.” His Word hidden in my heart comes back to my mind…and He brings peace. Honestly, I don’t have panic attacks when I know a “Lyme Attack” is striking….but without Jesus…I’m sure I would. He calms my heart and my mind in such a beautiful way. A way that goes far beyond description. All the pictures of Him healing those who came to Him in the New Testament come to mind…and I know that at the perfect moment, He’s going to heal me. <3 And so as the “seizure” passes…strength slowly fills my hands and fingers again….I can grab my Bible verses or my ipod. Usually as I’m regaining strength laying perfectly still is when I get my mind off the pain by scrolling through instagram…or replying to someone’s comment on social media. I have my qualms with social media…but during those long hard moments, it sure is a nice distraction to connect with friends and get my mind off of what I just experienced! And I’m sure I sound like I’m fine to anyone who reads what I may have just written or seen what I just “liked”…..
But you don’t look sick….
If anyone had come over today they wouldn’t have thought I looked sick….at all. They probably would’ve even thought I was feeling great. Would that have been true? No. Not by far. Yes, I’m definitely feeling MUCH better….but MUCH better is FAR from ALL better. Much better means I’m “functioning”…not “thriving”. :-) And especially with this recent Ulcerative Colitis/Autoimmune issue going on the past 5 weeks I’ve unfortunately been feeling my body going backwards in progress made. This Lyme recovery is definitely 2 steps forward and 1 step back…which still means progress even though that one step back is always SO hard and discouraging.
This topic of “But You Don’t Look Sick” is an incredibly sore and painful topic for a lot of people who are chronically ill. Because they don’t LOOK nearly as sick as they FEEL, many people assume that they are fine. For example:
My FIRST year of being sick when I was 18 a professor at the college I was taking classes at told me I was just stressing about life too much. She was a NURSE who was now a professor. At that point, I was still trying DESPERATELY to hide how sick I was from everyone around me…and after feeling like a fool with several Doctors who said it was in my head I thought that maybe…just maybe I could trust her. I shared with her the symptoms of intensity I was dealing with. She made me feel like a fool again and that I was making it all up in my head. It would be a long time before I would trust sharing my symptoms with someone again…
The tears of being told BY DOCTORS after these intense episodes of shaking that I was FAKING it…or hyperventilating. And then having them try to convince my parents I was faking it. Doctors?! The very Doctors who are supposed to be helping me and fighting for me and trying to figure out what’s wrong with me?? How anyone could fake what I’ve been through is beyond me…it would honestly be impossible. And why would anyone WANT to fake being sick? Nobody ENJOYS being sick…and trust me, opening up with the world on this blog & facebook about this struggle has been one of the hardest, most vulnerable and humiliating things I’ve ever done. I’d MUCH rather be known for ANYTHING else other than….”the sick girl”. I feel like everywhere I go now people know who I am…and know alllllllll about me….even if I have never met them. It’s humbling and a blessing. But just to make things clear. I would NEVER have chosen this….people don’t and can’t fake this. Needless to say, after that experience with those Doctors…It would be a long time before I would trust sharing my symptoms with someone again…
How do you tell someone when you WERE an independent, very driven, very athletic, very motivated young woman that you can’t even find the strength to get dressed in the morning. How do you tell people that even though you really are full of JOY on the inside you might look sad on the outside just because you literally have NO ENERGY….not even enough to open your eyes or smile? How do you tell someone that you forgot how to get home from some place you’ve been to a million times? How do you tell someone you forgot a pin number that you’ve used for years? How do you tell someone that you forgot your Birth date? How does that change so quickly….overnight…with one tiny tick bite? How do you tell someone that you’re struggling with depression from all of this when people’s only response to you is, “You’re Monica! You’re so strong! You’re not depressed! You’re the girl everyone else goes to for counsel…you’re not depressed. That’s silly.” How do you open up and share when people don’t believe any of the above….and it’s VERY, VERY real and happens every day?? (Quick explanation: Lyme Disease forms lesions in the brain which can MAJORLY effect brain/cognitive function therefore manifesting in what I just wrote in this paragraph. The lesions SLOWLY heal with treatment.) Needless to say…after meeting with many people who didn’t understand and who said things to me that REALLY hurt (unintentionally on their part)….It would be a long time before I would trust sharing my symptoms with someone again…
Sooooo…..are you back to work yet? Are you back to school yet? Are you better yet? Why is treatment taking so long? Why aren’t you better yet? I don’t mind those questions….but it’s the tone of voice people ask. I can tell when it’s sincere and heartfelt and truly said in a care-filled way…and I love those people! I can also tell when it’s said in a, “Grow-up, get a life, you’re not that sick kind of way.” And that used to hurt me….a lot. But now, I can honestly say…it doesn’t. I can honestly say that I truly don’t care what others think about me anymore. It’s a place that God has over-time slowly brought me too. It’s okay if people don’t understand what I’m going through…it’s okay if people don’t understand Lyme Disease…because Jesus does…and that’s enough. I truly LOVE those so much who don’t understand me and make it known that they don’t in sometimes pretty mean ways…Jesus wasn’t understood by many…and still loved ALL….and because of a work in my heart that HE has done I can truly say the same. It hasn’t been without tough, painful, hard learning lessons along the way….but HIS peace comes as you surrender to Him. <3 <3 <3
I’ve been told what feels like a MILLION times that I don’t look sick. (I really don’t mind this one…and if you’ve told me that. Please don’t take offense!! It’s OKAY!!!) I just want people to understand that a person can feel absolutely miserable and not look like it at all.
Recently I’ve been told by SOOOOOOO many people that I’m looking REALLY good and looking A LOT healthier than I was and yes! This is true! And I’m VERY grateful for this fact. It means the strength of my body is rebuilding…and it’s showing! <3 I still can’t drive, I’m still in a lot of pain, some days it’s still everything I can do to get out of bed and eat and breathe (not kidding), I still get confused/can’t think straight often, I still have a hard time communicating, I still get dizzy beyond function, I still can’t sit up for super long periods of time (on most, not all days), I still have to hold onto things to walk on some days….and yet, I’m MUCH better than I was….thank YOU, Jesus. I’m still not well enough to work, or go to school. I’m still not able to handle the visual stimulation from intense movies…I still have a hard time processing all the mind stimulation from being in a group with lots of people…I still react to even the smallest chemical scent/smell….I still can go weak almost instantly from things beyond my control and I still get Lyme “attacks/seizures” at the most random moments. Yes, I know I don’t look sick….but I am.
The object of this post is to share that how a person LOOKS on the outside
does not determine the *realness* or how *debilitating* a disease can be on the inside.
I’m fighting as hard and as strongly as I know how and I think most people who are sick fall into that category. We don’t want to be sick. We’d rather be healthy and running and traveling and working and going to school and dressing up every day and driving on our own. All the good meaning people who said I just needed to push myself harder, talk myself out of being sick, sleep more, eat healthier, not get so stressed etc….. Trust me! The reason I’m not over Lyme yet is not for lack of not trying. I’m tackling fighting Lyme with the gusto of a rhino running a million miles an hour. I view it as my full-time job right now…and then some. Please. Please. PLEASE…if you know someone that is sick….TRUST THEM. Don’t down-play their symptoms…don’t make them feel like they’re making it up. Encourage them to keep fighting, searching for answers and most importantly, running to God and His Word. There is ALWAYS HOPE. So please turn the “But you don’t look sick.” into “You don’t look sick….but I know you are and I know you don’t feel well and that’s okay. I love you anyways and I’m here for you.” That line coming from you could just honestly make the month of any sick person that you are friends with. <3 <3 <3 We try hard to act and look normal…because, well….we WANT to be “normal”…but just because we’re working SUPER hard at “acting” normal…doesn’t mean we feel normal.
I want to end by saying THANK YOU to my friends who have stuck by my side….THANK YOU to my family who encourages me to not give up…THANK YOU to all of you who make this fight against Lyme possible with your generous donation gifts and prayers and THANK YOU for taking the time to understand this hard-to-comprehend-hard-to-explain disease. And THANK YOU to all of you who made me feel like I WASN’T making this up in my head years ago before I was diagnosed. <3 You truly gave me the hope to keep pressing on even when so many roads I took made me feel like giving up altogether when they kept dead-ending on me.
I know this was long….thank you for reading. Thank you to those of you who aren’t sick who want to understand what we go through. And to those of you who are sick, you’re one day closer to FULL HEALING, friend. <3
Keep Fighting. Keep Smiling. Keep Hoping. Keep Trusting. Keep Believing and NEVER stop Praying. <3