WALK WITH ME

light through the storm

Colds are common.  Sore throats are common.  Stomach flus are common.  If you say you have these things, people get it.  They understand.  They tell you about that one time when they were so sick they thought they were going to die! They tell you how they missed a “whole day of work”.  And then, there are those experiences with illness that are not common, they only happen to a few of us and rarely, hardly ever does someone hearing about such issues, really “get it”.

I used to be one of those people.  I used to go to the gym 5 days a week.  I used to be able to go and do all I wanted.  There were no physical limitations or obstacles.  And then, it changed.  Literally overnight,  it changed.

It was a Saturday morning in March of 2003.  I remember the light coming in through the bedroom window, waking me slowly.  As I started to stretch out my arms, I felt it for the first time – the pain.  My fingers were swollen and I had trouble making fists.  As I tried to get out of bed, every part of me hurt.  Stepping down onto my feet, more pain.  It felt like my feet were on fire.  The skin was tight and pulled around swelling which made my feet feel like they would break like water balloons, if I stepped down too hard or too fast.  I pulled my shoulders in and my body curved into an upward fetal position, as I drug one foot and then the other to the bathroom.

I had turned 30 one month earlier.  I was still feeling young and capable.  Even though I had been dealing with some other health issues, I didn’t think much of it and figured it would all  just go away.  I was used to dealing with difficult things.  I even waited a few days to call my ENT.  When I did, I told him it “probably was no big deal and would go away soon”.  Oh, I was so very optimistic then!

After a few months and multiple follow-up appointments, my ENT had no idea what was wrong with me.  He referred me to some other specialists for testing.  Little did I know, my visits to them would be the first of many appointments and many tests which would add up to thousands and thousands of dollars and hours and hours of my off  time trying to get well, trying to find an answer as to why my body hurt so much.

Getting well takes time.  It also takes a lot of money.  Just going to doctors and going through testing can be a part-time job in itself.  It requires stamina and patience and resources.  It requires being willing to accept that doctors don’t have all of the answers. Sometimes you’re just sick and no one knows why.  Chronic illness often results in financial burdens and piles of medical debt.  These burdens weigh heavily and increase our stress which increases our symptoms. If, like me, you work full-time, then every thing is compounded as going to doctors means missing work which means losing money which means less money coming in all while you create more medical bills.  If you are single like me with no family support, then you do these things alone.  Everything takes a toll.

It has been 12 years now.  The pain, the swelling, the incredible fatigue, the headaches, the weakness, the dizziness, the stomach pain, the chest pain, the allergic reactions, the trouble breathing, the daily struggles… continue.

Fire walk

I decided to write my experience because it is uncommon.  Yet, I know there are others.  You may know someone.  Or, you may be the one who is sick.  You too may be dealing with similar struggles and may not be able to express what it is like to live in your body, to deal with constant pain, to move under the heavy weight of paralyzing fatigue, to feel very sick most of the time.  I am writing for you.  For us.  I am going to try to put into “real words” what “real life” is like for us. And maybe, just maybe, others will “get it”.  Maybe it will help someone’s someone, a caregiver, a husband, a wife, a mother or father, a friend,  to understand why every hour is different, why certainty no longer exists, why it is almost impossible to make future plans and why sometimes, just taking a shower feels like an incredible victory. How can someone understand when they don’t know how it feels?  How can they know how it feels unless we tell them?

When I am hurting, the pain is rarely in one place.  It is not a headache or back ache or, “My foot hurts”.  The pain is everywhere.  My first second of consciousness in the morning is pain.  That is how I know I’m awake, assuming I was able to fall asleep.  In my situation, there is a problem with my connective tissue.  Although I am still waiting for a final diagnosis to explain the entirety of my symptoms, all of my joints, every place bone meets bone, are loose.  The connective tissue which is supposed to hold them together is faulty. So, the bones move too far.  They twist too much.  The surrounding tissues tear very easily.  I have been told it’s lupus, fibromyalgia, chronic fatigue syndrome.  Soon I will be tested for some of these things and other possible diseases or disorders, but nothing may change.  I will still live in this body.  Unless there are cures or treatments, I may still be in pain.  That is the thing about the word, “chronic”.  It means “persistent and long-lasting”.  Unlike colds, or sore throats, or flus, it may not go away and it may not get better.  Sometimes it gets worse.  This has far-reaching effects on all aspects of your life, from finances to employment to relationships.

Imagine spraining one ankle.  Maybe you twisted it severely.  Imagine the pain and swelling and soft-stepping you would do to avoid increasing that pain.  Now, transfer that feeling to every joint, your fingers, wrists, elbows, neck, every vertebrae of your spine, your hips, knees, the other ankle and all of your toes.  Now, try to function.  Try to move around the room.  Try to get yourself ready in the morning, down 40 stairs to the car, walk from the parking lot to your desk, all the while knowing your co-workers are watching you from inside and making comments like, “Here comes Grandma Moses”, as you try to carefully step to not increase the pain and then, put on a smile so everyone thinks you are “fine”.  Now focus. Concentrate.  Work a 10-hour day.  Do all of this the same way, every day for 5 days.  By Friday night, you will most likely feel completely exhausted.  The mental strain alone of trying to function under such physical struggles wears on you.  You can’t wait to lie down, to take the pressure off your feet and your body weight off your joints.  In between, you may get a call or a text, “Hey! You want to meet for dinner?”, “Want to go out Friday night?”, “Can we get together soon?”, and you will feel it.  It will be the most painful part.  The pain of not being able to live your life,  be with others, physically be present, will hurt a little more every day.  Some friends will just stop calling.  Their patience will give out and they will disappear.  Others will accept you for where you are, but may stop asking.  Since the quote is too true, “Out of sight. Out of mind”, others will care and will text occasionally when they think of you, but since you will rarely be able to show up for things, they may not think of you very often.

There will be days when, out of no where, just when you were feeling ok and the pain was tolerable enough to take a drive or see some friends, the pain and fatigue will come over you like a bad storm.  It will literally feel like a storm cloud comes up from behind you, envelopes you, surrounds you, and before you know it, you can function no longer.  You cannot take another step, or drive the car, or lift the grocery bags, or take out the trash or vacuum or do the laundry.  You can barely crawl to the bed.  And there, you may stay for days.

Since I live alone, those days can be very long and very quiet.  I try to muster the strength to get up, feed my kitties and myself, and lay back down.  I pray a lot.  I sing.  I meditate on Scripture.  I watch movies.  I read or listen to audio books.  I write note cards to encourage others.  Sometimes, I talk to friends on the phone.  But, for the majority of the time, my weekends are still.  When people say, “So! Wha’d ya do this weekend?!!”, I cringe and respond, “Oh, I just took it easy and relaxed”, knowing they won’t “get it” and don’t need to.  Not everyone in my life needs to understand.  There are many people who will never understand and don’t even want to.   Others will care, but won’t want any details.  Others will care and want details, but do not know what to say or how to reach out.  And some precious few will care, will understand and will feel the pain right along with you.  They may even cry your tears. These are the dearest ones.  These are the ones who will carry you when you can no longer walk.  They are God-given friends, family, sometimes complete strangers I believe are really angels dressed in regular clothes.  They will come to you with no expectations.  They will be there, in the storm, fighting the rain, holding you up, cheering you on.  They will help in any way they can.  These are the precious ones.  Keep them very close.

If I could tell someone else one practical thing to remain emotionally and spiritually healthy while living with chronic illness or issues similar to what I deal with, I would say this, “Be patient with yourself and others”.  Neither of you knows how to deal with this. We’re all just learning.  There will be days when things are not that bad.  On those days, I try to forget I’m sick and live as normally as possible.  There will also be storms.  On those days, I do what I can and accept what I cannot.  But mostly, I purpose to be thankful.  On really bad days, when the pain is so intense that tears fill my eyes, I pray.  I thank God for every little thing I can think of.  I thank Him for hot water, clean water, clean clothes, sweet kitties, food in my refrigerator, a job to go to, work I enjoy, friends who love me, pain medicine, a soft bed, clean sheets, air conditioning, His constant provision, His incredible love, His sweet whispers that keep me taking the next breath, the grace to keep going.  I thank Him for all of that.  And on those days, the clouds part some and a light shines through and I know I can make it, one more hour, one more day, one more week, one more year. My hope is in Him.  He holds my future.

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3 Comments

3 thoughts on “WALK WITH ME

  1. I love the way you tried to convey the pain for people that don’t go through this. I gave an anthology to my ex doctor who didn’t get it,”Imagine being in active labor, the intense, nauseating, I’m going to pass out and vomit pain. Now imagine your in that pain every minute of the day and you have to drive to work, converse with your patients, and smile all while you feel like your dying. I do this every day.”
    I was still working as a hairstylist then, 2 years ago now. I’ve gotten so much worse and found out I have Chiari I Malformation plus complications from having EDS. Nonetheless, God is my strength and I found him because of this, so I feel blessed all at the same time. Thank you for writing this! You are a strong women.

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    • Hey Sam,
      Thank you for your kind words. I am so sorry to know you feel this pain too. But what a blessing that you “found God because of it”! Just know you are not alone. I am here with you through good days and bad. Hugs, Candace

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  2. After 12 years, the Lord has given me answers. I have a rare, genetic, connective tissue disorder called Ehlers-Danlos and another called Mast Cell Activation Disorder, which means my body creates too many mast cells. EDS affects the entire body, but its primary symptom is all-over, intense joint and muscle pain. I praise God for the knowledge He provided. I am grateful to Aurelia and Rhonda. Both were instrumental in listening to the Lord in prayer and making suggestions which prompted me to see a geneticist. I can now begin therapies to build muscle tone and manage my pain as well as see a cardiologist for further testing. God is good- all of the time.

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