Tag Archives: pain

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surviving chronic illness

 

We made it.  31 Days of traveling together down the road of chronic illness, sharing advise and hope. It was my greatest wish to give you content that would be helpful, no matter where you are at in your journey.  So where do we go from here?

We keep moving forward.  If you are still looking for a diagnosis, keep knocking on doors until you find someone who can help you.  If you have a diagnosis and are trying to find the strength to live through another day of sickness, I hope you will take the time to practice some body & soul comfort. If you are in a spot in your journey where you are having more good days than bad ones, I encourage you to find someone else who is suffering and lend them a hand.

This 31 day series is over but my compassion for you is still going strong.  I will continue to periodically post articles on health, wellness, faith & hope.  In the coming weeks I will be transcribing all these posts into one document that will be available for download, free of charge, so you can remind yourself of the content or share with others.  Of course, the individual posts will stay available here as well and I will put a special tab or button on the home page to help you find them.

Thank you dear readers, thank you contributors, thank you for those who were praying for me during this mission of mine.  I thank God for all of you.

Day One- 31 Days Of Surviving Chronic Illness

Day Two- An Introduction

Day Three- A Diagnosis

Day Four- The Good, The Bad & The Indifferent

Day Five- Think Outside Of The Box Part 1

Day Six- Think Outside Of The Box Part 2

Day Seven- Guest Post: Advocacy

Day Eight- Snags To Watch For

Day Nine- Feed Your Body

Day Ten- Listen Up!

Day Eleven- Stop Eating Chemicals

Day Twelve- Eat Your Colors

Day Thirteen- Easy Veggies

Day Fourteen- A Little Is Better Than None

Day Fifteen- Rest

Day Sixteen- A Little Comfort Is What You Need

Day Seventeen- Alternatives In Nutrition

Day Eighteen- Recognize The Patterns

Day Nineteen- Allergies/Intolerances

Day Twenty- Food For Thought

Day Twenty-One- Guest Post, You Are Enough

Day Twenty-Two- Don't Pretend

Day Twenty-Three- Restore

Day Twenty- Four- Find Your Tribe

Day Twenty-Five- Find Some Sunshine

Day Twenty-Six- Real Or Not Real?

Day Twenty-Seven- Guest Post By Amy Sandvos

Day Twenty-Eight- Let Them Go

Day Twenty-Nine- Let Your Weakness Make You Strong

Day Thirty- Resources

Day Thirty-One- In Conclusion

 

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During this 31 Day Series on Chronic Illness I have briefly mentioned some health/wellness resources but as promised here is a list of books, websites, podcasts and other information that might be helpful for your journey through chronic illness.

Some of them are very general, meaning they will apply to anyone.  Others are more disease specific. This list is ever-growing, I just jotted down the ones that came to memory but I will be adding more and more resources to it as time goes by and this list will be readily available from my home page.

If you have any resources to share feel free to comment here or email them to me, we're all in this together!

BOOKS/MAGAZINES/ARTICLES

WEBSITES/BLOGS
FILMS/DOCUMENTARIES
 
 
PODCASTS
 
 
MUSIC
      

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This month we have been privileged to hear from 3 guest writers: Beckie Miller, Chris Morris, Amy Sandvos.  Each writer shared from their experience, they've been there.  They have experienced struggles and they have seen victories.  One more thing they all have in common: they still suffer from chronic illness, disease or pain. Beckie's husband still has Parkinson's disease, Chris and his daughter still suffer from seizures, Amy's son will likely deal with the effects of chemotherapy his entire life.

They, and I, still have bad days.  In fact, for the first 3 weeks of this series I suffered a relapse, I was barely able to get through each day. So despite my great improvement from 13 years ago, my body is still broken.   I was preaching to myself this month.  But time and experience has helped me gain some wisdom, some perspective, some tools to get through the bad days and that's what I hoped to pass on to you during this 31 day series.

Charles Haddon Spurgeon is known as one of the most famous preachers in England during the late 1800's.  He was known for preaching to crowds numbering in the tens of thousands and has the nickname "Prince Of Preachers." What many people do not realize is that Spurgeon was no stranger to chronic illness.  He himself suffered from gout, kidney disease, "rheumatism", and depression.  His wife was also frequently ill.  Here is what Spurgeon has to say about his affliction with depression:

One Sabbath morning, I preached from the text, “My God, My God, why has Thou forsaken Me?” and though I did not say so, yet I preached my own experience. I heard my own chains clank while I tried to preach to my fellow-prisoners in the dark; but I could not tell why I was brought into such an awful horror of darkness, for which I condemned myself.
On the following Monday evening, a man came to see me who bore all the marks of despair upon his countenance. His hair seemed to stand up right, and his eyes were ready to start from their sockets. He said to me, after a little parleying, “I never before, in my life, heard any man speak who seemed to know my heart. Mine is a terrible case; but on Sunday morning you painted me to the life, and preached as if you had been inside my soul.”
By God’s grace I saved that man from suicide, and led him into gospel light and liberty; but I know I could not have done it if I had not myself been confined in the dungeon in which he lay.
I tell you the story, brethren, because you sometimes may not understand your own experience, and the perfect people may condemn you for having it; but what know they of God’s servants? You and I have to suffer much for the sake of the people of our charge. . . .
 You may be in Egyptian darkness, and you may wonder why such a horror chills your marrow; but you may be altogether in the pursuit of your calling, and be led of the Spirit to a position of sympathy with desponding minds. (An All Round Ministry, 221–222)

My question for you is this: What do you have to share?  What have you learned on your journey back to wellness? Who can you encourage today?  Who can you empathize with? Who can you be an advocate for?

Despair and self-pity have a way of creeping in when we become too focused on our own pain to realize that there are hurting people all around us. Those co-sufferers need to hear your story.  They need to hear your wisdom. They need to know that they are not alone.

I want to encourage you to take a look around your circumstances and see who you can be a messenger of hope to.  They're out there, waiting to hear what you have to say.

tumblr_mve3gcenob1st5lhmo1_1280 "You find out who your friends are, somebody's gonna drop everything.  Run out and crank up their car, hit the gas, get there fast, never stop and think 'what's in it for me,' or 'it's way too far.' They just show on up, with their big ole heart.  You find out who your friends are."    - country song by Tracy Lawrence

Whenever the above song comes on the radio I get a little choked up.  Happy tears, actually.  I have the world's best support team behind me and I have no idea how I could have made it to this point without them; from being unable to walk down to the mailbox to writing a 31 day series on how to survive chronic illness.

Some of you are very hurt right now.  Not just physically but emotionally. Because the very people you thought you would be able to count on, the people you thought would walk every road with you, left you behind.  And you just can't understand how they can be that insensitive, that uncaring.  Didn't your friendship mean anything to them?

Let them go.

And I don't mean that in a "What-eh-ver, you don't like me? Fine, I don't like you!" kind of way. We want to believe that our current set of friends are the same friends we will have for the rest of our life.  But the truth is, friends come and go.  And sometimes they come back again.  Each person enters your life for a season, to share life's joys and teach you something about the world and yourself.  Embrace those people in your life today.  Savor every smile, every laugh, every tear.  But when that season is over and it's time for them to leave you...

...let them go.

When you're suffering through chronic illness or pain, there are a few reasons why "friends" may disappear:

  • They don't realize how sick you are.  In the early days I was unwilling to admit even to myself how sick I was, I wasn't about to admit it to my friends. All this did was delay their understanding, leaving them confused. Have you explained to your friends exactly what is going on with you physically?  Have you shared a list of symptoms with them?
  • They don't know how to help. After one of my many surgeries, Bree wanted to help but she didn't know what to do. Besides laying in bed and resting there wasn't much I needed however, there was one thing I wanted: mashed potatoes & gravy from KFC. Crazy right? But I couldn't yet tolerate heavy foods and it sounded comforting.  I let Bree know that's what I wanted and guess who showed up at my front door with mashed potatoes & gravy?  It made me feel good because it was what my body was craving that day and it helped her feel like she was being helpful.  Have you asked your friends for their help or or you waiting for them to just show up and magically know what you need.
  • They are walking through struggles of their own. Just because you are in crisis doesn't mean everyone else's lives go on cruise control.  Maybe they are new parents or on the brink of divorce or dealing with their own illness. When you are suffering from pain or illness there may not be much you can do for your friends but there is one thing you can do: cut them some slack.
  • They can't relate.  If they have never suffered any serious illness they are going to have no idea of what you're going through. One of my other close buddies suffered a miscarriage and had a tough time recovering.  Over the course of her recovery she experienced the hormone crash that follows miscarriage and she called me crying, "I'm so sorry that you feel like this every day!" It wasn't until that experience that she began to understand what I was going through. She was able to empathize and offer a new kind of support.
  • They need a break.  Being the care-giver can be tiring; physically, mentally, emotionally.  This is why it is important to have a whole team of people helping you.  Give your friends a break when they need it.
  • They just don't care.  Ugh.  This is the hardest one to reconcile in our hearts.  It is gut-wrenching to have a "friend" walk away while you are in your greatest time of need for no other reason than your illness has become inconvenient to their desire to have a good time.  It isn't mature, it isn't right. But sometimes is true.

I think most of the time friends disappear it is a unique combination of the above but no matter their reason for being absent or for walking away you have a choice to make. You can lash out, call them out on it and verbally attack them for your perception of their behavior.  Or you can sit and stew about it, allowing the bitterness and resentment to fester and ferment which will only prolong your emotional and physical suffering.

Or you can let them go.

Be grateful for the time you spent together as friends.  Remember the fun times without any hint of resentment for the present situation. In your heart, thank them for their friendship then release them to live their own life, their own journey.  Understand that they may need to leave in order to allow space for someone else in to your life that can better aid you along your road to wellness.  And if their path should bring them back to you someday, welcome them with gratitude, no resentment or revenge.

Then let them go.  Let the hurt go.  Let healing in.

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Today is an incredible guest post from my soul-sister Amy Sandvos.  I have shared Nolan's story with you before but if you're new you can read it here. Amy has graciously shared her thoughts and personal battles with us and I feel so blessed to know such a strong, honest soul. 

I'm here coming from the perspective of the caregiver. We had a 3 year battle with cancer, which my son Nolan won last April!

So, you get your diagnosis. Cry. Pray. ( Try and make your deal with God.) Go online. Mistake. Go offline. Pray. (Give God your newest proposal.) Listen to everyone's theory on "why". Then forget everything they just said, because 90% of it is crap. Cry some more.

For me, shock turned me into a machine. Fight or flight right? I'm not sure if I was fighting or trying to fly away into an alternate reality. The one where there are bluebirds and rainbows and babies do not get cancer. I was go go go all the time, at the births of new babies, blood draws, birthday parties, IV chemo, play dates and spinal taps.

Then, everything slowed way down. Shock began to fade. Exhaustion. So exhausted, and there was still so far to go. Depression. Asking myself, "Is this what depression feels like?" Despair, self pity and sadness settled in. "What do I do with all of this?" I didn't know what to do, so I did what any exhausted sad person would do, I stuffed it all away because I couldn't handle it.

Que chest pains.

Hello anxiety. That's the thing about emotions locked away in a hidden cupboard behind your boxed up secret love of Katy Perry. They'll remind you that they are there, and they want out. They will scream and yell and make a scene until you embrace their ugly little faces, and stare into their eyes.

What did I do to cope? What I loved, what saved my sanity... a little class at the gym called XBike. Dark room, music pumping. Lungs burning, legs screaming. Mind racing. Then, things start to focus, emotions bubble to the surface, things line up. Endorphins kick in and do their job. The gym became my therapist, my medication, my escape.

What should I have done differently? I should have taken the time, that good 10% of advice, and found someone to talk to. A PROFESSIONAL. I made excuses, valid excuses. "it's too expensive, I'm not ready, I don't think I have the time". I'm pretty sure I was just scared. Scared of the pain that sifting through all the emotions would unearth.

I had to make the choice to save myself.

I had to unlock the cupboard and let those little uglies out, stretch their legs, then we cozied up for a nice long chat. I don't lock them away anymore and they come to visit often. When I look into their eyes, I'm no longer scared.

Carey again: If you find yourself in need of counseling your medical professional can direct you to a licensed therapist.  If you cannot afford therapy many churches (such as my church Bayside) offer reduced rate or even free counseling for those in need.  If you are in the Sacramento/Roseville area and are a cancer patient or family member of a cancer patient Amy recommends Wellness Within.

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When you've been sick or in pain for long periods of time your emotions become a tad unreliable. Something that wouldn't have bothered you back in your "healthy days" may send you over the edge now. You are more inclined to be hurt or offended by people, whether they have bad intentions or not, whether they actually did something wrong or not.

You can easily become overly sensitive to emotionally charged situations, especially if your condition effects your hormones.  Any hormones.

So it will be very important for you to learn to "check" yourself before responding to a person or situation you feel was unfair or offensive.  I'll use myself as an example:

I am normally a pretty unemotional person.  I don't have high-highs or low-lows, I usually maintain at a steady pace right in the middle somewhere.  That is until I started suffering from chronic illness.  Suddenly I found myself irritated and even angry at people or situations that normally I would have just shrugged off.  It took me a little while to catch on, but once I realized just how impatient and annoyed I had become I decided that I would have to run my grievances by one of my non-sick friends before I went out with my sword drawn.   Either that or let a few weeks pass by and see if it was just me letting my hormones get the best of me.

And on those days when I just cannot change my attitude, no way-no how, then I sequester myself away until it passes.  Just because I feel something doesn't make it right.  Or real for that matter.

At the end of the Hunger Games Trilogy Peeta has traumatic, reoccurring dreams or memories and he has to stop and ask his friends, "Real or not real?"  I find myself asking that question before I take up an argument, "Real or not real?" It has saved me a lot of apologizing.

When you find yourself getting all worked up, especially during a "bad spell", take a deep breath then let it out slowly, and make sure it's a real emotion and not just the pain or sickness talking.  Your friends and family will appreciate it!

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Keeping your spirits up is just as difficult as keeping your energy up when you have chronic pain or illness.  So it's a good idea to have a few resources up your sleeve to help give you a little boost when you need one.  Here are a few online cheer-uppers for you to try:

If you have a favorite inspirational site feel free to share it with us here or on the Facebook Page!

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photo by unsplash.com
photo by unsplash.com

If there was one thing, from the emotional side of the spectrum, that I feel I should warn you and tell you to watch out for in yourself it's this: isolation.

When you aren't feeling well, you naturally pull away.  You retreat from your social life so you can rest, heal, cope.  And that's ok for the short term.  But when you are sick for longer periods of time, chronically or consistently, you spend less and less time in normal social settings.  If you're really bad off, you may even isolate yourself from your family members who live in the same house with you.

I understand that you need rest time, time to let your body "catch up".  I know that in the middle of a "bad spell" your emotions can be so raw that you are afraid you will tear the head of the next person who looks at you funny.  I know that it can feel like no one can possibly understand how you are feeling.  But don't sell your friends or family short.  No, they may never experience exactly what you are going through but if they are part of your support team they want to help.  Even if that means giving you some space when you need it.  Or checking in with you when you've been gone too long.

I recently read a very interesting article called "The Social Life of Genes." It talks about how our community effects the expression of our genes.  It's a fascinating (albeit pretty scientific) article and I found this quote especially interesting: 

"If you actually measure stress, using our best available instruments, it can't hold a candle to social isolation. Social isolation is the best-established, most robust social or psychological risk factor for disease out there. Nothing can compete."

Isolation makes you sicker.  We are created to be social creatures, we are designed to live in community. The modern world would like you to think you can do it all by yourself and complete independence is the pinnacle of success.  It's a lie.

During your struggles with chronic illness there we definitely be days, maybe weeks that you simply will not be able to interact socially.  However, this will not always be the case.  When you go into a time of remission or have a string of good days, it is vitally important that you reach out socially.  Call a friend, attend a support group, meet a your cousin for coffee, watch a movie with your kids.  Go to a church meeting or go visit the folks at the local senior center.  Interact with the world around you.

There are times when I have to force myself to go hang out with my girlfriends, not because I don't like hanging out with them (because they are awesome!) but simply because it sounds exhausting and I'm already barely conscious.  But they have a way of raising my spirits and making me laugh.  Although I might be even more tired by the time I finally get home and into my bed, my soul is so much stronger for doing it.  And memories of the good times are what carries me through the bad times.

Learn to read the signals your soul is sending to you, when it's time to let others participate in your healing. Let them come in, brace you up and help you make it through another day.

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No matter what type of condition you suffer from, after extended periods of illness our souls end up in the same state.  Battered.  Worn out. Dry. Empty. Without hope. Dreamless.

Just as you need to purposely take time to restore your body as best you can, you also need to set aside time and space to work on restoring your soul. It sounds easy.  It's not, at least not at first.

So start with the things that bring you joy naturally.  About 20 years ago, ong before my body broke, I started a list entitled "Things That Make Me Smile."  I kept the list on my desk at work and every time I remembered something, big or small, that made me happy I wrote it down.  Some of the items listed were:

  • a mug of hot chocolate with whipped cream
  • the smell of the orchards after the rain
  • big fluffy blankets
  • my sweat pants
  • the smell of citrus
  • walking barefoot in the cool grass
  • working out
  • mountains, lakes & rivers
  • a good book
  • growing things

This list came in handy 20 years later when my body shut down, the world as I knew it changed forever, and I was having a hard time adjusting to it all.  After a several years with zero answers and zero improvement, my strong will that had always allowed me to "power through" had to concede. And my soul became a shriveled shell.

I don't remember exactly when I started purposely taking time to journey towards restoring my soul, I think it was pretty gradual.  But at some point I realized just how important it is.  It takes an enormous amount of mental energy and soul strength to fight for your wellness.  Some seasons you have a ton of motivation and it powers you through the pain.  Other seasons you can't imagine trying to make it through one more day and the thought of getting up tomorrow and doing it all over again makes you cry.  Those desert seasons are when you need to pull out your arsenal of soul-care.

You need to remind yourself of the things that bring you joy.  They can be a happy thought to a grandiose vacation or something you only did once in your life. And then start incorporating those happiness practices into your life. Run yourself a hot bath, read a good book, listen to soul-calming music, take a joy ride in the sunshine, watch a a funny movie, take an online art class, play with your grandkids, light a scented candle that you love, or any other thing that brings you joy.

Another way to think of this exercise is gratitude.  For patients suffering from depression most therapists will suggest keeping a "gratitude journal."  The expression of gratitude has the power to change your outlook on life, even a broken, painful life.

It's no magic pill.  You won't experience instant soul recovery and immediately feel like taking on the world. But if you felt just a little better, a bit more healed, wouldn't it be worth it?  And I can promise that if you will practice a little soul-care on a regular basis you will begin to feel stronger.  You will regain the strength you need for the fight.

If you don't know where to start, can I point you to one of my chapters in the Bible? In fact, this chapter is loved by many, Psalm 23:

1 The Lord is my shepherd; I shall not want.

2 He makes me lie down in green pastures. He leads me beside still waters.

He restores my soul. He leads me in paths of righteousness for his name's sake.

4 Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.

5 You prepare a table before me in the presence of my enemies; you anoint my head with oil; my cup overflows.

6 Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the Lord forever.

I'm praying for you hurting one, praying for your soul to heal.

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I am so excited today to turn the mic over to Chris Morris of Chris Morris Writes.  Chris has walked the road of chronic illness with his own medical challenges and in the role of the caretaker.  I have had the pleasure to read a pre-release copy of Chris' soon-to-be-released book, you ARE enough: Myths About Chronic Illness where he talks about the many myths we encounter while traveling through the world of chronic illness.  I am so thankful he agreed to share with us.  I know you are going to find his insights helpful.

Let’s be really honest with each other for a moment. Living with a chronic illness is tough. Some days, it feels impossible.

My daughter is autistic and epileptic, and I have a seizure disorder as well, so we have learned a lot about what makes living with chronic illness so difficult.

People don’t seem to understand the struggles we have. They confuse our illness with slowness, or silently think we are faking our pain somehow.

But that is not even the hardest part. At least not for our family.

The hardest part about living with or loving someone with a chronic illness is this myth: You are not enough because you are ill.

Whether we suffer from arthritis, high blood pressure, asthma, heart disease, emphysema, cancer, schizophrenia, multiple sclerosis, rheumatoid arthritis, or autism, we are less than everyone else because we are ill and may not get better. And nothing can change this, other than a complete recovery.

It is so easy to believe this myth. For example, because of my seizure disorder I cannot swim alone. I am a thirty-six year old man. I am 6’7”. I have an MBA in Health Systems Management. I am competent in many things…

But I cannot swim alone, because if I have a seizure I could drown.

How ridiculous is that! And yet, it is my reality, because of my chronic illness. With almost insane restrictions on our lives at times, it is so easy to buy the lie that says we are “less than”, that we are incomplete human beings.

This myth leads to so many other statements which are also untrue:

  • We don’t deserve to be healthy.
  • Our current health is the only determinant for success in life.
  • There is something wrong with us when we are not hopeful about the future.

We must overcome these myths to move forward. Otherwise, we risk despondency and an empty life. It all comes down to a choice.

We must choose hope. 

Hope is not dependent upon our health. We do not earn hope. We should not see ourselves as unworthy of hope.

We are enough. You are enough. Regardless of any chronic condition.

But it is hard. The world around us screams we are defined by our accomplishments, our material goods, our physical strength or beauty, or our salary. Some or all of these external “proofs” of being a successful human being are limited by our illness. So we settle for less, believing the best is reserved for other people. People without the same problems we have.

But we must not settle for less. So what does it look like to choose hope? To believe we are enough? The specific answers are different for each one of us, but certain concepts are universally applicable.

Apply the proper weight to your limitations. So, I am a middle-aged, 79-inch giant who cannot swim alone. This is a legitimate limitation on my life, and I can fixate on it if I choose. Or I can work around it.

Honestly, I didn't plan to be an Olympic swimmer, and I don’t even like swimming that much, so swimming in company is not that big of a deal for me. So I choose not to swim alone. And I don’t berate myself for it.

Stop hiding your dreams behind your illness. This is a tough one to swallow some days. It is so simple to blame our illness for not chasing our passions. Now sometimes, this is just bottom-line truth, and there is no unnecessary victimization happening. The quadriplegic with dreams of being a marathon runner may need to adjust some. But the person with chronic fatigue syndrome need not let their dream of being a poet be held captive by their illness. Don’t let your dream die on the vine of your imagination because of your condition.

It is because of these challenges we all face that I am in the final stages of publishing my book you ARE enough: Myths About Chronic Illness. The gist of the book is that those with chronic illness (and those who love sufferers of a chronic illness) believe myths or lies that keep us from stepping into a full life. Fundamentally, this is because we become convinced we are NOT enough, that we are disqualified from greatness or excellence because of our illness.

I also write regularly on my blog Chris Morris Writes, and I hope you will stop by. If you need hope, encouragement, and strategies to push through some crazy circumstances, what you find on my blog will help. We need a community to lift us up, practical steps to help us when we feel lost, and reminders of God’s goodness. Above all, we need to know we are not alone.

Carey again: As soon as Chris' book is published I will let my readers know so you can read more of his insights and when you have a chance please stop by his website where he shares encouraging words weekly.