Too many people are rude to Spoonies. Many people doubt the intensity of our pain and they question if we are indeed really sick. No one seems to understand battling against your body and taking care of yourself is a full time job. Simple tasks are draining. Some people go out of there way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.
I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague.
Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strange towards us.
Too often people judge us before they get to know us. People treat us at times like we are nothing or are stupid.
Too often we hear phases like:
But you don’t look sick
You need to be more positive
Have you tired…
You’re too young to be sick
It must be nice not having to go to work/school
You’re just having a bad day
You need to get more exercise
It’s all in your head
Maybe if you got out more
These things get under a spoonies skin to say the least. When people mistreat you, SHAKE IT OFF. It is not your fault. Don’t let them get to you. You are an amazing person. Even though you are ill, you are so valuable. You have so much to offer this world. Shake off the stares, Shake off the negative and nasty remarks, Shake off the heartbreak…. Shake it off.. It”s gonna be alright
Mornings for those with a chronic illness are a struggle beyond words. Waking up and willing our bodies to function is a fight. Here is a spoonful of encouragement for spoonie warriors. Happy Monday, brave friend!
You have victoriously made it out of bed this morning. The symptoms and pain are already overwhelming, but you’ve got this. You only need to take today one minute at a time. You have all the strength you need, even though it might not seem that way. Anxiety and depression attempt to dictate your day. Take a breath. Take a break. Get some rest. Keep fighting to make today the best day possible.
You have been chosen to walk this path. It is one filled with heartbreak, disappointment, and setbacks. Walking the path of someone who is chronically ill is a challenge to say the very least. Being sick has most likely disrupted your flawless rhythm with life. It has stopped you dead in your tracks. Your illness has tried to toss your dreams out the window.
Though this path is difficult, I assure you there is a lot of beauty to be discovered. Sure life is not what it used to be, but the song you sing is just as beautiful. There is hope, joy, love, laughter, and life to be found on this path. You will be able to recreate your wonderful dreams. You are still you, despite your illness. You are an amazing and beautiful person with a flawless story and a huge purpose.
There will be days that you become overwhelmed and feel completely alone. Your feelings are understandable, however, I promise you, you do not walk alone on this path. There are people who care about you, people who understand how difficult the journey is, and people who want to support you.
I am proud of all you have accomplished. I know you will thrive today. This week will be lovely simply because it is the only choice. While you don’t need to be positive all the time you need to take baby steps forward. You are doing amazing. Raise your coffee (or tea) to a great week warrior!
If you know me, you know I am chronically ill. My illness does not define who I am but it is a part of me. I look at as a trait not necessarily positive or negative. Like having brow hair, an oval face, or having dimples. My invisible fight. Words that empower. Words that inspire. Words that sum up my life over the past few years.
Without a doubt I have become a fighter, in this invisible fight. Few people know the details of my fight. Chronic illness is much more than what is seen on the surface. The battle is within. Falling apart only behind closed doors.
I had many encounters with terrible doctors. No one took me seriously (I still struggle with this today). Doctors downplayed any concerns. My mom was my advocate, my voice. Growing up I was dangerously shy. If someone were to look at me crossed I would shrink back into my shell. Hearing my middle name released a waterfall of tears. Speaking up, was terrifying for me. Gradually I began to find my voice and become my own advocate. I have educated myself on treatment options, my illnesses, and everything medical that is relevant. I have learned that I know my body and my illnesses better than any doctor. After all I am the one who lives with it every moment of every day. I fought to find my voice. My mom and I fought to find good doctors.
My health began to spin out of control in high school. It became evident that something was really wrong. Little by little new symptoms would develop. A new rash, unbearable pain, sun sensitivity, collapsing, weight loss, hair loss, and that was only the beginning. Medical testing became the norm of my life. Blood work that included more than thirty tubes of blood, MRIs, x-rays, GI studies, CATSCANS, scopes, EKGs, EEGS, and other medical tests that I cannot recall the names to. In addition, I had five operations in high school. The operations ranged from removing my tonsils to removing cysts to explority surgery.I thought I had hit rock bottom my junior year of high school, after an encounter with a medication that caused seizures. Little did I know rock bottom was much further down. Little did I know that I would long to go back to those high school years and deal with that pain and those symptoms.
I felt like the pause button has been hit one too many times. I have been home bound many times over the past six or so years. Every time play was hit and I began to recover, get stronger, and move forward pause would be hit yet again. It seems like each time my life is put on pause gets longer and finding the play button becomes more difficult.
My invisible fight was taken to a new level in college first due to pluricy. Then to finding bloody urine that indicated a sever double kidney infection lasting four months. I was taken off my Lupus medication which gave Lupus permission to recklessly attack. I began seeing doctors every few days, had medical testing weekly, and became a regular at urgent care. I landed myself in the cardic unit last September. I continued to get worse. More testing. More doctors. More pain. Hopeless.
My symptoms shifted. My abdomen began to give me issues again. This time it was worse. Abdominal swelling to the point of looking at least six months pregnant was my newest symptom. I began to question how much more my body could take. How many more days of intense pain that sent me to bed screaming and doubling over. I was taped. Giving in to the fight was tempting. No one had answers. No one knew what to do.
Things were terrible. Eating was difficult and staying hydrated was nearly impossible. The fatigue was thick yet my body wouldn’t surrender to sleep. I had to rest going up or down the stairs. Breathing was a chore. Shower a hazard. Daily tasks seemed like huge projects. Some days I couldn’t bend down to put on my own socks.
Looking back I believe that being admitted was the best thing for my health overall. I was at rock bottom. It was more difficult to keep moving forward than I can describe.
When I received the message on Chronically Hopeful inviting me to help and participate in Invisible Illness Awareness week I was shocked and over joyed. I firmly believe that sharing our invisible fight stories is vital. Someone had shared the fight song. I immediately connected with it and shortly after fell in love with the lyrics. I feel like that is where I am in my invisible fight, taking back my life. Taking back life after dramatic pauses is difficult. At times it is painfully slow. Progress seems invisible. Taking back my life and continuing to fight is a daily decision and struggle. I am mastering a new balance act with my invisible fight and the rest of my life.
My invisible fight has probably been the most difficult fight of my life. I know it will continue to be a tough fight. It has caused me physical pain, heartbreak, taken me on an emotional roller coaster, played tug a war with my faith, caused me to lose friends, and lose much more. Yes, there are countless negative attributions of my invisible fight, but I am sincerely and deeply grateful to be in this fight. First of all I am grateful because I believe that God will use my invisible fight for his glory. Through my invisible fight I have matured as a person and as a Christian. I have learned so much. I have meet some of the most inspiring people. I have had the honor of running Chronically Hopeful and helping with the Invisible Illness Awareness Campaign. My prayer is that my invisible fight will be a testomy, inspiration, and blessing to others.
Emotions can very well be our best friend or our worst enemy or somewhere in between. They change rapidly many times without warning. Adding any medication provides them with an excuse to run wild within. This is downright difficult to cope with. Not only do our emotions run wild but some medications change how we physically appear which can be just another reason we beat ourselves up. We are many times our worse critics. Over analyzing and negatively speaking to our selves. God did not create us to be hated. He is love, he crafted you through and by his love. By his love and grace you were saved. He does not want you in toxic, abusive, or negative relationships. Like wise he does not want you to be consumed by shame and negative self talk.
So much has changed for me sense becoming ill. One physical trait that sticks out like a neon sigh is my lovely moon face. I hated it in the beginning, I was extremely self concuss. Now I am by no means saying that I love it now however I have learned to accept it. More recently I have encountered abdominal swelling which makes me look six months pregnant. The swelling is daunting. Every time I get ready to leave the house the gruesome thought meanders into my mind, what if a some asks if I am pregnant or just asks how far along I am. The things complete strangers come up and say can be mortifying. I struggle with surrendering this completely to the Lord; leaving it in his hands. I give it to God, then go right back to worrying. Letting go and letting God completely be in control of anything is a struggle. As humans we crave control. We try to make sure everything is in place and unfolds according to our plans. We also worry. No matter what physical or emotional changes we encounter God still loves us, we were created in his image. He understands the changes we are facing and he understands our frustration.
Everything here on Earth is temporary, even the side effects from our medication. Coping with physical changes is a challenge, however you are not alone on this journey. Frequently, we feel isolated. We digest the lies that no one understands, no one cares, we are worthless, and unlovable. It is worth repeating, God is with you on this tragically demanding journey of life with a chronic illness. He never leaves you side, not even for a brief moment. He wants you to depend on Him every moment of every day. To depend on him when you have an abundance of spoons, joy, and laughter. To depend on him when you cannot go a step further consumed with debilitating pain and weakness; as you endure medical procedures.
Being wrapped up in life, you might neglect to acknowledge that there are other Spoonies out there. We understand your frustrations, symptoms, struggles, and your journey. Our understanding is incomplete only in the sense that our story varies from yours. We try to provide the most understand, support, and encouragement to one another.
There are countless things to attempt to cope with while chronically ill, it becomes overwhelming quickly. You my friend are doing an amazing job. You have achieved more then you ever expected. You are a warrior. Though the road might be long it is filled with beauty and blessings. All these things will soon pass and only remain as a mere memory. Medications and chronic illness might alter aspects of you, but you are still you. You are stunning inside and out, a true work of art with a breath taking purpose.
The sun kisses our saltwater hair fair well. Our schedules burst with activity as routines replace the relaxed rhythm. It seems as though we awake one morning to a transformed master piece outside the window. Than it dawns on us, as the crisp morning air embraces us, that fall is among us.
Fall is a new beginning for many as school begins we are inspired to reevaluate goals. I am finally beginning my courses this week. To me beginning school in September is late. I am taking twelve credits, all online: Math, Spanish, Computes, and English. I get a lot of questions about how I do online courses. It is a lot of planning, re-planning, being flexible, and motivated. Let’s jump back to the goals track, for a brief moment. I have found it helpful to have either a monthly or semester list of goals. It helps minimize anxiety and helps with organization.
I have been working on improving my planning system. I got a durable binder from stables, which I use to store planning templates, in addition to my general planner.
Currently I have been using the passion planner template to map out my day.
Planning with a chronic illness can seem nearly impossible. I try to get ahead with school work yet under plan my days. Personally, I am an overachiever. I like to get ahead as much as possible. I know most people procrastinate, so this method would not be ideal. I attempt to accomplish as much as possible without causing a flare up. We all know we need to pace ourselves, but that is easy said than done!
Color coding, stickers, and quotes make anything super cute and fun. I use decorating the pages as a way to rest and de-stress.
Brain fog plays into all this organization and planning stuff. For this reason I use a white board in addition to keep myself on track.
Accommodate you body in your planning. For me I function best mid morning. Doing anything before 7 AM is just not happening. I can’t sit for too long due to my back and my POTS. Therefore frequent breaks are a must. I try to take into consideration that any day can have the bumps of extreme pain, fatigue, dehydration, bathroom marathons, or spoonie vacations (aka an ER or Urgent Care trip). My good days are the beginning of the week due to my chemo. Also take into consideration doctor appointments, IV treatments, PT, or any other spooine activities.
“For you are my hiding place; you protect me from trouble. You surround me with songs of victory.” Psalms 32:7
There are days living in the Spoonie world is difficult. Thick anxiety is layered within. Fear of those two heavy words.. what if. There have been an abundance of moments on this journey where I wanted to hide. Like a timid child hidden from the melody of an intimidating thunder-storm.
When we were children, we didn’t just hide out of fear. Hiding provided entertainment and excitement. The anticipation of being found remains unwavering. However addition positive emotions associated with hiding have melted with age. Negative slush traps us.
Hiding provides an escape. For even a moment I would like to escape the burdens of the Spoonie world; the doctors, medication, testing, emotions… the burden of being a spoonie.
This verse reminds us of our ideal hiding place, which is the Lord. In the mists of chaos and struggles we can crawl into the Lords compassionate arms. He is our hiding place. He is the source of all we need; our everything.
The Lord knows everything; his understanding is unhindered. He spares us from countless tragedies. He gently guides us through each storm.
There is a blissful victory in Jesus. He allows each moment of our lives to work together and bring Him glory. Though I may walk through the valley of the shadow of death melting from the negativity within I know somehow the Lord will receive glory. There are many things I do not understand. But I refuse to allow the burdens of the spoonie life to hinder my faith. Despite it all I will praise the Lord. With a heart of gratitude and wonder I will thank the Lord for my struggles. For he will receive glory and victory. Blessings are woven into this season. He will transform it into a master piece. It will be used for something beautiful.
“Nothing in your life has happened by chance. You are here exactly at this moment in history with exactly the circumstance you have encountered because God has a specific task he wants you to fill.” The Lord has an astonishing purpose for your life. He will use every negative thing for good, to encourage others. Keep faith. When you cannot take another step, rest in the sovereign arms of God.
