Or the modified version: Who knew that everyone would join me in isolation!?
My face in this pic perfectly illustrates how I feel about the current state of life and the world! Oh, the irony of it all for someone who is chronically ill!
I started taking small baby steps out of my house and living more like a "normal" young single adult about a year ago, and even then I found it terribly difficult to fit in and be "normal" after 3+ years of being mostly home-bound due to Lyme disease.
The truth of the matter is that when you have an illness of any kind (even if it isn't contagious) people don't want to be around you because it's completely unknown and very scary at times. I found it incredibly difficult to find a friend that I could really count on, my social life was non-existent for the longest time, and whenever I expressed how lonely or suffocatingly bored I was, nobody seemed to understand, and nobody wanted to understand.
So, there's a part of me that wants to say to everyone that "corona-virus is all in your head, you're using it as a crutch, you just need to stop being lazy, get a job, and do yoga and you'll be fine!" just like I was told by countless amounts of people. But, the truth is that those comments hurt and are completely false to those who are suffering from any severe illness.
So... I'd invite you all to take this as a time to instead be KIND.
Illness has a way of bringing out the pure selfishness in people, or the pure love in people. The good news is that YOU CHOOSE which one it brings out in you. I never had any "tips for isolation and quarantine" articles floating virally around the internet when I took my first steps into isolation. And so, with those lessons learned, my tip to you would be to use WISDOM at this time.
Isolation is something that will kill you long before the illness will, and many people that I've seen die of Lyme disease died because they gave up because they had nobody. Because fighting a battle without helping hands and a team of people that love you is very VERY difficult.
Remain close to those you love with all the resources we have at this time because that's what will get us all out of this place that we're in.
Sending you all love, hugs, and support during the COVID-19 crisis!
Comment below if you relate to this!
I call this little phenomenon of the chronically ill, "The Pain Cycle." Tell me if this sounds familiar:
You just got through your last pain flare, and things are looking up. Maybe you go a few days... or even a few weeks... or if you're really lucky a month or so with low pain levels, and then *BAM!* Right back down where you started with more of that familiar friend we call pain. Especially with Endometriosis, this is a hard battle for me because I can always feel a big flare coming a few days before and the fear cycle that accompanies this is very real.
I've done this for 5 years, and although I see much improvement the pain game is tricky, frustrating, and makes me worry seemingly endlessly!
So, if you have a friend who suffers from any form of chronic illness or chronic pain, compassion is key. The best thing you can do to help stop this cycle is to get them out of their head. Talk them through it. Go on a walk (even if it's short and slow). Listen. Be there. This is a normal thing to experience when you're chronically ill, and we simply need people to walk the hard road with us, ready to help when we fall back to another flare or let the fear of an oncoming one interfere with daily life.
If you find yourself in the pain cycle like I so often do, remember to ground yourself and stay present. Remember that your pain doesn't define you, but your resilient and enduring spirit does. Don't give up and remember that there is always hope and happiness ahead!
This is such a COMMON MISCONCEPTION about chronic illness!!
I am finding myself escaping judgment like this the more I discover healing and am able to do more things. But, for the first 3 years of my Lyme journey when I was home-bound and bedridden, I received many comments about how lucky I was to just lay around at home all day.
To this day, I still receive comments about how my illness gives me "so much more time." That's just simply not the case.
Whether you're chronically ill, or healthy as can be, managing time is something that everyone has to learn. And an illness adds extra to the list of to-do's and compels one to re-prioritize.
It's a DAILY, CONSTANT battle.
Daily routines that if I don't do I'll be sicker than I already am.
Chronic illness doesn't make life any easier just because I can't hold a full-time job or go to college full time. It's not a constant vacation, and it's not an excuse for me to be lazy. On the contrary, it often adds to my life because I have to work twice as hard to acquire QUALITY of life.
Don't assume that anyone's lot is easier than yours. Instead, offer compassion and love. I know I have it easier than some of my other chronically ill friends, but that still makes me journey hard for me. And through the hard, I'm learning how to ask for help and rely on God and the people who love we me the most to give me the daily love and help that I need. We are all learning how to do that, and we will be a lot more successful as we work to encourage and help one another through it all. Asking for help and not being able to do "normal" things is nothing to be ashamed of. My story looks different than the average young person, and that's okay. My job is to live life with this illness to the fullest that I can manage.
Comment below if you relate, and remember that taking time to rest and do treatment is nothing to be ashamed of!
It is one of those weeks where I feel the tired vibe very fiercely, and I've been praying hard lately for strength through the weariness.
I believe that everyone can relate to this in one way or another, so you would think that this isn't something that is commonly misunderstood. Everyone knows what it's like to be tired right!? Well yes, but there is a difference between being tired, and being BONE tired from fighting the good fight for years and wondering if you will ever have a month or a year free from the pain. I regularly have to remind myself that when someone tells me they are tired it is, more often than not, a cry for help.
I learned this week that there are simply times in life when sleep isn't necessarily the remedy for this form of exhaustion and weariness. Oftentimes LOVE is what can invigorate a wearied soul.
Never underestimate how far a phone call, a hug, a hand to hold, or a kind word can go to someone who feels weary. I will always be a firm believer that love conquers all, and so in our moments of pain or healing may we all be able to offer a healing hand to those who are incredibly "tired."
Comment below if you can relate to this form of being "tired" and what helps you get through it!
There are times when winter is reminiscent of being swallowed by a deep black hole. And if we're not careful, we may forget the light that's right behind the cloud cover.
I hold deep antipathy for darkness, and I often look up at the sky in the wintertime wondering if the bleak gray of winter will come to an end. It's common to hear talk of "winter depression" or "seasonal depression," but I almost never hear talk of what it's really like, or what it even really is. I wish I could say that wintertime was merely a battle with sadness, but I've found it's often much deeper than that, and the PTSD that comes from long months of illness is as real as the PTSD that comes from fighting in a war. In all reality, this is a war for those of us who push through winter with chronic illness, one heavy step through deep snow at a time.
Last year at this time my family was walking right into "The Lyme Flare of 2019." I took up my bed in February of 2019 with pain so deep and penetrating that I couldn't lay on one side of my body for too long without having to sorely role over to another side to release any pressure that was weighing on my pained muscles. I had been in this place many times before, but this time was a complete recession from how I had slowly been improving throughout 2018. Like falling down the stairs or off of a tall cliff, I looked up at this beast referred to as a "Lyme flare" that I was somehow facing once again and felt completely destitute and defeated.
At the time I had been struggling with piercing feelings of insecurity, worthlessness, and the fear that I will never be enough. I had been striving so relentlessly hard to work through life on my own, that my mental health had completely receded. I prayed for relief from the monsters inside me and instead of relief I was left to cope with physical pain and my ability to do anything removed from my grasp. And it was in this time-frame that I resolved to surrender everything to God and hope that by some miracle I could be pulled out of this darkness that swallowed me while I lay helplessly in a bed or on a couch. The "winter depression," as one might call it, was so heavy that I often felt completely paralyzed. I remember at this time that every time I could manage to glance out of a window my eyes would be met with gray skies and cold frigid air.
What I didn't know at this time was that this wintry flare that left me feeling completely lost and pained, ended up being one of the greatest blessings of my life, and resulted in one of the greatest lessons of my life.
Up to this point in time, I was living subconsciously as if I have to do everything on my own for quite some time. I'd never done anything half baked, and I'd always found myself meeting my problems and pitfalls with ambition and hard work. Unfortunately, there are things in life that one cannot possibly do on their own, such as facing monstrosities like Lyme disease, betrayal, or abuse, and I often found myself passing blame to myself for the misfortunes that happen simply as a result of mortality. I blamed myself for my negative feelings, and I numbed myself to my heartaches and hurts as a way to somehow prove that I was strong and that I could heal and survive on my own.
If there was anything that "The Lyme Flare of 2019" taught me, it was that I simply could not do it on my own. I had been driven to a place where burning over my pains with work and busyness was no longer efficient because my body would not allow me to. And as one can imagine, I faced my pains with the quiet allowance of feeling. It was excruciating. But with that, I learned about grace.
It was as if God had answered my cries for relief by giving me permission to stay in bed and sleep for a month or two. I felt His love and support even when all I could do was rest. And surprisingly, life went on. He took care of what I couldn't and I felt great peace and comfort that this was a time of RECOVERY, STILLNESS, and HEALING.
You see, we are not expected to pass through toil and trial on our own. And in a world where I have heard the phrase "God doesn't give you more than you can handle" run freely from the mouths of those who have yet to taste bitter cups in this life, I commonly assumed that there was something wrong with me because THIS was more than I could handle.
Lyme is more than I can handle.
Betrayal trauma was more than I could handle.
Watching parts of my family fall apart because of this disease was more than I could handle.
Living day, after day, after day for years watching my mother in pain and suffering that is seemingly endless is more than I can handle.
And the heartache that comes from isolation and loneliness is MORE THAN I CAN HANDLE.
The truth is that there are many times in life that God will give us more than we can handle and that is simply because we were not meant to handle it by ourselves. We were given grace, tender mercies, each other, and a Savior who loves us tremendously. So as we pour out our aching souls to Him, He gives us grace for grace, and mercy for mercy. Who knew that lying in a bed in debilitating circumstances could teach me that I am enough, that I don't have to "handle" everything by myself, and that just because I can't handle something doesn't mean that He can't.
So now I face this winter with similar anxieties, pain, and emotions boiling to the surface. I still glance out the frosted over windows to see bleak skies and frigid air. I still often find myself in deep weariness of soul because there are some battles in life that do not merely end.
The increase of symptoms and the seasonal depression can still weight heavily on my body and heart, but this year I fight with a changed perspective. This year I fight with quietly loud faith knowing that I am not fighting alone and that I don't have to face the scary aspects of life on my own.
The winter will always pass through where I am. The skies will always gather clouds and the storms with often rage. The cold will often chill us to the bone, and sometimes coats and scarves won't always be enough to warm our troubled hearts. But one thing I can guarantee is that bright blue skies will always appear again. Light conquers cold and dark. And there is often something beautiful awaiting us in the middle of these merely bleak or utterly terrifying winters of our lives.
The trick is to remember in the middle of them that as we strive, we are enough, we're not alone, and sometimes you can even find some beauty within the storm. For I always thought that snowflakes could turn out to be quite beautiful anyway.
God's grace can and does sustain us, and I pray for that as we persist through another winter.
"I feel like I have no purpose!"
I've listened to myself and others express this many times throughout the chronic illness journey, and it's time that we bust this myth that the chronically ill have no purpose simply because their lives look different than the average person.
I recently had someone close to me express how they were so excited that I was opening a gift shop because I would now "have some purpose." As if I haven't had purpose for the past five years of my life... On the outside, it may seem like I don't have a purpose. I spent 2+ years in a bed, home-bound, and unable to really DO anything. But there's a whole side of chronic illness that is just not seen.
I may have spent 2+ years home-bound, but I also spent my time participating in grueling treatment protocols, resting, and HEALING. I invested my purpose is growing my heart and my mind. And because of that, my entire purpose for life shifted.
Yes, I don't have a 9-5 job. Yes, I live with my parents. Yes, I've spent a lot of adulthood in pain... but through it all, my heart was growing in love, empathy, patience, and hope. Lyme has instilled in me a deep passion to advocate for the sick and love the afflicted. Lyme disease did not rob me of my purpose, it clarified and expanded my TRUE purpose. Lyme disease softened my heart and helped me discover who I am truly meant to be, and it continues to do that for me every day!
If there is anything I can say to the Chronically Ill it's this:
You have worth!
You have purpose!
You have so much to give and offer!
It simply takes time to know and understand that shift that is taking place inside you. May we all be content and patient as we discover our purposes through all the suffering.
Every time I see this meme floating around the chronic illness community on social media I can't help but laugh out loud, mainly because it's so true that it's funny!
This Chronic Illness Truth applies to anyone who has a chronic illness that affects their joints, or even just anyone who is home-bound because of their illness. I really want to focus on the aspect of being homebound for a minute here...
I am a young, single adult that lives with my parents and I live in a household of all sick people. My parents and I have chronic Lyme disease, and we survive this illness by working together and yes, we spend a lot of time at home because we're too sick to go out, or if we do go out we pay for it later.
With this situation of mine, I always find it very frustrating to receive comments from people about how "I don't put myself out their enough," or "I just need to get out more!" This truth is important in order to demolish the stigma.
I am not a recluse that doesn't get out enough. Those who have chronic illness are sick to the point where there are days when leaving the house is unhealthy for us. Those of us who are home-bound are often in pain and managing to the best of our ability, and if you do happen to see us out we're either having a good day, or pushing through pain, or both!
So my message today is to REMEMBER. Remember to call the friend you haven't talked to in a while. Remember to invite us even if we can't make it. Remember to be present in our lives just like you would any other friend. It may difficult for us to navigate this illness, but we still intend to live a full life and we still need love, just like everyone else.
If you're home-bound because of chronic illness... you are still of great worth. Never forget that.
Comment below if you relate!
I grew up on Hallmark movies. We all the type... Those movies that always begin with a single, independent, seemingly flawless woman with some high-end job in the city, or some cozy gift shop or bakery in a small town. And after a short intro of this stunningly beautiful girl, we're then introduced to Mr. charming, handsome, CEO, or buff small-town handyman who only wears plaid and manages three small businesses of his own. Along the way Mr. Charming meets Ms. Independent and in less than a day this unlikely couple can manage to save a town... or their small business... or Christmas; all while simultaneously falling in love, finding some reason why they'll never work out, separating for a few minutes, and then later (in the same day I might add) manage to resolve everything. Furthermore, we all know that every Hallmark movie ends with the world's most romantic kiss. And at the end of every Hallmark movie, we all assume the success of that perfect couple.
I suppose that somewhere in my adolescent heart I believed that such perfection could exist. As I grew older I subconsciously held my expectations high and my hopes even higher that someday my Hallmark life story would become a reality. Let's just say I put the word "hopeless" in the term "hopeless romantic." I aimed high and hard for that reality. My perfect reality. My perfect lie.
I'm sure you can imagine my shock when life didn't turn out the way I thought it would. Now, don't get me wrong; for I do not solely blame Hallmark movies for cultivating my perfect lie. I have found society, social media, social norms, and the status quo nurturing this perfect lie more often than not.
I've watched young people my age post fundamentally every Olympic moment they experience in their short lives to their various social media accounts; leaving others relentlessly comparing their personal worsts to everyone else's public bests.
I've observed pictures of endless glamorous and fun first dates. I've scrolled through perfectly edited engagement pictures in perfectly white fields or stunningly flawless mountain ranges. I've clicked on flashy engagement rings and completely enchanting wedding videos. I've liked and commented on many college degrees, job promotions, immaculate maternity photo-shoots, and perfectly clean pressed children. I've seen it all and aimed for it all, only to find that it is not all real.
The problem with this subconscious facade is that it manifested in my very conscious life. I spent my days making never-ending lists of qualities in a "perfect man", only to find that there isn't a man that will check everything off on my list, and the most important things in a man weren't even on that list! I went to college because that's what you're supposed to do when you're young and fresh out of high school, only to find that college wasn't for me and that didn't in any way make me a failure. I've been obsessed with lists, schedules, planning, and my idea of perfect only to find that sometimes the lists and the schedules are significantly less important than God's timing, and that life is what happens AFTER you make plans! My reality was that I flirted with perfection because I thought it looked pretty, and the ugly in life scared me.
I learned very quickly that the easiest way to overcome your fear of the ugly is to face the ugly head on and trust that God will lead you through the painfully imperfect moments in life.
I found myself sitting in a dentist chair the other day conversing with the dental assistant who was cleaning my teeth. She asked me a few things about my life in which I shared with her about my blog, the gift shop I'm opening, etc. I mentioned a few small things about my life that I currently feel good about to which she replied:
"Wow! It's like your life came straight out of a Hallmark movie! You inspire me!"
To be honest, I'm still minorly laughing at that statement because oftentimes there are a lot of things that go unseen in other people's lives. It's natural to miss the sweat and tears that go into starting a business. Many people do not comprehend the long nights and overly stressful days that accompany earning a college degree. There's a lot of hard work and effort that is often overlooked among young people who can only see the outward "perfect relationship." Most people don't see that I have a debilitating chronic illness that adds extra weight and struggle to my daily life. Most people don't witness that agony of betrayal or abuse. The agonizing pain of many things that often feel like more than we can handle is often not talked about or recognized. This then leaves a lot of us wondering what we're doing wrong and why the long hard journey is something that must be borne alone. And then for those who are at high peaks in their lives it leaves them blind to the suffering around them and unknowing how to help, or unaware that it's even necessary for them to help at all!
My life is far from perfect and that's okay! I've lived my fleeting moments of perfection. I've been the young girl at college with the world at her fingertips. I've fallen in love at Christmas and have pranced around with a flashy diamond ring. I've had perfect mistletoe kisses and perfect family photos. I've picked out the perfect wedding dress and posted perfect engagement photos to my social media.
But there are shadows in every picture and wounds that go unseen. I also went home from college due to chronic Lyme disease and have spent years suffering and praying for relief and healing. I've passed through "a boyfriend for Christmas" only to be met with a breakup in June. That perfect mistletoe kiss only lasted for a second, and that flashy engagement ring meant nothing when glaring straight into the face of dishonesty and betrayal. Those perfect engagement pictures never lead to a wedding, and those family photos were originally meant to be wedding photos and are missing a few members of my family.
And all of these imperfect things were things that were and are out of my control simply because they are a result of mortality.
So, life is far from perfect... where's the hope in knowing this?
The hope is in knowing that the value of your life is not calculated by the sum of your perfect moments or the moments that everyone sees on social media.
Life is not about the flawless moments that take your breathe away. Sometimes it's about the moments where your heart feels like it can no longer beat because your grief is too great to bear. Occasionally it's about sudden rainbows in the sky or dancing in the rain. More often then not it's about the moments in tears on the bathroom floor because we've all be there at one point or another. Sometimes it's about laughing so hard your stomach hurts. Often it's about embracing through the hard and wiping tears through the sorrow. It's about long nights and headaches. Intermittently it's about the first good night's sleep you've had in forever. Frequently it's about worrying and praying for a good outcome. Sometimes it's about problem-solving, and hand-holding, and enduring, and pouring your heart out to God in prayer. You see... life is the sum of all human experience because without the pain, sorrow, and imperfection, we would have virtually no recollection or appreciation for the joy, love, and beauty that comes in life.
The most beautiful moments in life, are the moments that are borne out of great suffering. They come in the form of sudden beautiful vistas, sudden miracles, and moments of peace, hope, and unexpected smiles. Without opening up about the ugly imperfect moments of life, there are no hands to hold when you are called to pass through your life's ugly. So instead of hiding in secret, may we all be safe spaces for people to share their imperfection. Because becoming perfected for the eternities is all about striving to overcome the imperfect in mortality, and thanking God for the beautiful journey that life is.
"Anyone who imagines that bliss is normal is going to waste a lot of time running around shouting that he’s been robbed. Most putts don’t drop. Most beef is tough. Most children grow up to be just people. Most successful marriages require a high degree of mutual toleration. Most jobs are more often dull than otherwise. Life is like an old-time rail journey–delays, sidetracks, smoke, dust, cinders, and jolts, interspersed only occasionally by beautiful vistas and thrilling bursts of speed. The trick is to thank the Lord for letting you have the ride." (President Gordon B. Hinckley, Ensign, Nov. 1984:86 )
We have Christ to heal us from the imperfect of mortality. And we have each other to aid in the healing process if we so choose to lift each other in love and support. May we all share our imperfect. Because at the end of the day... all of the outward perfection is just a lie anyway.
Okay, I realize that we haven't had Thanksgiving yet... and it may be a pinch too early for Christmas posts... but I've been thinking about Christmas since June so I'd say it's time!
I've always thought that there was something so enchanting about making wishes. And although I've never been one to think that success or happiness comes from a mere wish... that has never stopped me from wishing on a star, or tossing a coin into a well. Birthday wishes always make me smile, and Christmas wish lists always seem to grow in my head this time of year. But the funny thing is the transformation that has taken place within my wishes as I grow older.
As a child, my Christmas wish always seemed to be for the newest Barbie or the latest pair of shoes. As I got older, I always wished for a "boyfriend for Christmas" or "my one true love." And now my wishes always seem to be for less tangible things: things that are obtained through heart and hope. And although Santa may not be able to bring me a cure for Lyme disease (anymore than he can stuff a good man in my stocking...) I do know that Christmas is a time for miracles, and God has blessed me with many a miracle not only around Christmas time but all year long.
So to those who are wishing and hoping for healing this time of year: remember that healing comes one step at a time in the simple precious miracles that can be so easily missed until we take the time to look back and see what was happening all along. Healing, hope, peace, and joy are things that God intends for all of us to experience as we press forward with faith. Christmas can be a difficult time for those of us that have been stripped of many things through trial and trauma, but this year I pray that your heart will be full and your body will be at peace as it continues on it's healing path. May we all hold on to our hope and experience pure joy as we enter into the Christmas season.
I once used to be a young girl that found every detail in life to be absolutely magical. I used to record every moment that seemed completely enchanting on little strips of paper, and I'd fold them up and put them in a small jar that I kept on my dresser. And as I now look back on those moments that I never would have recalled otherwise, I'm reminded that every one of those moments was perfectly ordinary, but my mind recorded them as memories that were special.
I've jumped in huge piles of golden leaves whose crunch sounded like a symphony to my adolescent ears. I've smelled fresh baked cookies only to run into the kitchen carefree and joy-filled. I've balanced on sidewalk curbs and rolled down hills with the only side effect being pure laughter. I've watched clouds form shapes in the sky almost like magic, and I've walked barefoot in the grass without a worry in the world.
I've taken long walks with people who make me wish that the path we were on wouldn't end. I've watched sunsets and prayed in small groves of trees. I've felt my heart skip beats because I thought I was in love. I've waded in streams knowing without a doubt that my feet would leave footprints in every place I've tread, and known later that footsteps and hand-prints can remain in hearts as well.
And now... I grasp these beautiful moments tight because throughout the change and pain in life I find it significantly more difficult to experience these things. Or perhaps the difficulty is less from the lack of opportunities, and more from the lack of my ability to see artistry and charm because life can often be coated in tragedy, heartbreak, and pain.
So how does one compile all of the magic and the pain? How does one process the Olympic moments with the pitfalls and darkness? Perhaps the beauty of life is that we are not required to live it all at once, and we are not required to live it all by ourselves.
So, for now, I'm putting one foot in front of the other and leaning for dear life against the One who has experienced this all before. For now, I'm praying for eyes to see the magnificence that is so graciously placed before me, and I'm praying for fortitude in every ounce of pain and suffering that I may experience.
And most of all... I'm praying for all of the cuts and scars to be healed because carrying this all on my own has proved to be soul-destroying.
And then I seek for extra faith and practice deep trust. Because my God and my Savior have never let me down, left my side, or broke my heart, so why would I doubt for a second His infinite ability to heal my body, my heart, and my soul? For as I practice and reach for daily faith I'm reminded that God is writing an unforgettable and breathtaking story for me, and He's simultaneously preparing me for glory and joy that I can't comprehend in this life.
So may we all remember the enchanting moments that are perfectly ordinary. And may we all learn from life's agonies that prepare us for life's greatest joys. For no being can live in a state of endless bliss without missing some greater exquisiteness, and it's very possible to be in the midst of suffering while simultaneously witnessing miracles. There is room for all of it in life. And we must remember that there is a purpose for it all in life. As we do that, we'll walk paths that will bring us to our greatest peace and joy. And that's worth living for.