Adjusting to Serious Illness

This is an excellent article from CFIDS & Fibromyalgia Self-Help. It is not easy to live with chronic illness, whether you’re the patient, the caregiver, friend or family member. Included in this article are ten practical ways that patients and their families can use to make their households and relationships work better.

Adjusting to Serious Illness:
Strategies for Patients and Their Families

By Bruce Campbell

CFS and fibromyalgia force profound adjustments, both for patients and for those around them. Household tasks are juggled, finances are often strained, and all family members wonder what the future will bring. What strategies will help you and your family adjust if you are struggling with the disruptions created by CFS or FM?

Understanding Your Unique Situation

The foundation of an effective response is understanding your unique situation. Every family’s circumstances are different. Just as each patient must individualize his or her self-management strategy, families need to develop a response to CFS or FM that fits their individual circumstances.

The scope of adjustments will be dictated by the seriousness of the patient’s health problems. CFS and fibromyalgia vary greatly in severity. The average person in our self-help program reports that she functions at about 25% of normal, but there are sizeable numbers who are housebound, while others are less affected and continue to work part time or full time. The severity of medical issues will set the limits on the amount of adjustment required.

The family’s financial situation is also crucial. Some families can afford to let the ill person stop working or have her take an early retirement, while others are stretched financially and may be forced to make financial adjustments of various kinds. The presence or absence of children and, if present, their ages is significant. Couples with school-age children have to juggle work and child care. Those with adult children may get help from their kids. The health of the spouse is another important factor. In some families, both spouses are ill or a normally-healthy spouse has a health emergency like a heart attack or surgery.

A final factor is the strength of the bond between the partners. Some marriages are made stronger by illness, while others become frayed and still others break. The response of the well spouse to illness may vary from strong support, on the one hand, to disbelief, abuse and abandonment on the other. Some people in our groups, who have had multiple marriages report that they have experienced the full range of possible responses, most commonly a lack of support in an initial relationship and understanding in a later one.

Ten Strategies

Here are ten ideas for how families can adapt to CFS or FM.


Read the rest here


Suffering According to God’s Will [Joni ​Eareckson Tada repost]

HospitalSick-Joni ​Eareckson Tada-sm--AMP

Suffering According to God’s Will

​by Joni Eareckson Tada

“So then, those who suffer according to God’s will
should commit themselves to their faithful Creator
and continue to do good.” 

—1 Peter 4:19

​All suffering is within God’s sovereign will. There is not a sparrow that falls without His knowledge or a soul lost for eternity without His tearful purpose being accomplished. In the midst of the expanse of the sovereign will of God is one kind of suffering initiated by us that God not only allows but rewards.​

There are many ways to suffer in this world, where things happen to us. But the kind of suffering referred to by Peter is suffering we experience by choice, through obedience. Such obedience may result in mockery, beatings, discrimination, trials, and temptations. It’s the price one pays for having our bodies in the world and our spirits in the kingdom. Like being on a rack, we can’t escape the torture.

My wheelchair is a suffering that came from the sovereign purpose of the glory of God. And since that time twenty-five years ago, I’ve also suffered things that have come upon my spirit as a result of being in the kingdom. I have chosen to flee temptation, to drag my body from church to hospital, to endure the scorn of those who don’t know God. And I have suffered as a result. Such is the will of God for my life.

​The common suffering He comforts. The godly suffering He rewards. Exchange neither for anything. We can “entrust our souls to a faithful Creator.”


Lord, grant me strength to endure the common sufferings of life and the willful sufferings of Your kingdom. In all these, may Your presence sustain me and Your glory be made known.

Taken from Diamonds in the Dust.  Copyright © 1993 by Joni Eareckson Tada.  Used by permission.  Zondervan Publishing House, Grand Rapids, Michigan 49530




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Day by Day Renewal


On this Sweet Saturday, please remember that although we may lose heart during very trying circumstances, God does not lose heart with us. He is always ready to enfold us in His everlasting arms and remind us that through the pain we are being renewed day by day.

Day by Day Renewal


“Coffee Break: Recharge Your Brain”
read an Internet headline and could I ever relate to that! I am definitely a coffee drinker and very thankful that its pick-me-up properties help ease me into my day. I awaken foggy brained most days, but after an hour or two of java sipping, I feel better able to face whatever the day holds.

JustPourTheCoffeeAfter reading that headline, it occurred to me that if coffee can boost our energy levels, how much more could we be recharged by diving into the Word of God?

In this particular Scripture passage Paul is urging us to not dwell on our present circumstances and trials, but rather to focus on God’s grace in our lives.

I am always impressed by how often Paul—who continually praised God in the midst of the many trials, persecutions and imprisonments he endured—encourages us to look outwardly to God rather than inwardly focusing on our daily concerns.

What an example Paul is! He never lost heart over his dire circumstances and in fact urged his followers to use these situations to draw closer to God in order to be spiritually and emotionally renewed. Paul’s close relationship with the Lord gave him the confidence to rely on the Holy Spirit’s strength when things were toughest for him.

Beloved, we can do the same thing! During those times when we feel we positively cannot go on, let’s not let fatigue or pain keep us from drawing closer to God and renewing ourselves with His refreshing spiritual nourishment.


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Oh, the pain…

mish mash

This Mishmash Monday is brought to you by the pain I live with every day. There are several things I’m going through this week that will make it difficult for me to work on my blog regularly for the next couple of weeks, so I’m scheduling several inspirational image posts to remind you how much you are loved by Jesus Christ, the One who loves us so much He died for our sins.

Even though I endure pain on a daily basis, I always look to my Savior and Lord, Jesus Christ, for “the peace that passes all understanding” (Philippians 4:7). And I absolutely “consider it all joy…when [I] encounter various trials” (James 1:2).

How is this even possible? Because I know where my true joy lies: in the knowledge that one day I will no longer be in any kind of pain as I enjoy life in my new heavenly home.

So, here’s my mishmash of images that describe (in a way) how I feel on any given day.


My term for de-conditioning is “payback”



This is how I should look because of how I normally feel

This is how I should look because of how I normally feel

Migraine head

Migraine head


If you have trouble viewing the Casting Crowns video above, here are the lyrics to the song, “Praise You in This Storm”:

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say “Amen”, and it’s still raining

As the thunder rolls
I barely hear Your whisper through the rain
“I’m with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

And I’ll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I’ve cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can’t find You

But as the thunder rolls
I barely hear You whisper through the rain
“I’m with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away


I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth


My Hair Hurts!

I couldn’t believe it when I found this image at A New Kind of Normal. Jamee lives with multiple chronic illnesses so she understands the sentiment in this image.

I can’t tell you how often I have said that my hair hurts, or have had to change clothes because seams and tags cause extreme itchiness and sometimes even pain. I have cut the tags out of most of my clothing and am thankful for the companies which are now imprinting clothing with the information in lieu of a tag.

These are just a couple of my symptoms of my Fibromyalgia Syndrome (FMS) and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). Oh, and let’s not forget the chronic migraines that are liberally sprinkled in with everything else.

Next week is National Invisible Chronic Illness Awareness Week. Please check out the Invisible Disabilities site to find out more about what’s going on next week, or just to learn more about chronic illnesses that seem invisible to others but are very real to those of us who struggle with one or multiple of these illnesses every single day.

Apparently this flareup I’ve been going through has affected me more than I realized because I thought I had already composed this post and scheduled it for today but I had only started it, typing in only a few lines before laying it aside several weeks ago. But that’s the way my body works in these “new normal” days. As I type this, I am struggling for each word so I guess it’s time to stop typing and publish this.

Before I go, though, I want to keep it real by saying that throughout my many struggles with these chronic illnesses, I have many days where despair threatens to take over. Sometimes it does. But most times I can think clearly enough to remember that I have a Hope that doesn’t quit and never fails me:

But those who hope in the Lord will renew their strength.
They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. —Isaiah 40:31

Beloved, no matter what you’re going through, hold on tight to that Hope! One day all pain and suffering will be erased for those who believe in the mighty and saving power of the Hope of the world: our Lord Jesus Christ! Those who trust in His saving grace will be able to live pain-free for eternity. The physical pain we feel now is nothing compared to the extreme joy we will experience in our heavenly homes.

To find out more about the saving power of Jesus Christ, please read this or contact me. I would be so happy to answer your questions!

In His powerful and comforting grip,

Recovery Mode

Reblogged from October 22, 2011: an ongoing issue for me in my new normal…


It has been a very busy week for me and I’m grateful I was able to do everything I did, but… now I’m going through the crash and burn phase—what I call my payback days. Living with multiple chronic illnesses is no picnic. It’s very discouraging to look around the house and see everything that needs doing but only being able to do the minimum to keep up. I try hard not to think back on how much I used to be able to do, seemingly simple things like cleaning my whole house in one morning.

Those days are long gone.

Now I can only do one thing, such as dusting one room, and then have to stop and rest for awhile before doing anything else. And quite often, dusting that one room is the only task I am able to accomplish that day.

Take something as enjoyable as having company. Rick and I have friends over for coffee on Thursday mornings, and I love my time with these close friends whom we call “family.” But when everyone leaves, I suddenly realize I am wiped out! If the migraine I woke up with hasn’t completely left me, then it feels horrible by that point because of all the talking and laughing during that sweet fellowship. I wonder if that’s what the phrase “hurts so good” means—well, maybe not.

To this “get it all done now” turned “maybe tomorrow” person, it has been a slow process. From denial to frustration to understanding and finally to acceptance, this journey has not been easy. However, I’ve learned some things that work for me:

  1. Accept what you can do and don’t worry about the rest — it will eventually get done.
  2. Make yourself rest often, even if you don’t think you need it at the time. If you’re like me, your mind wants you to keep on going (like that Energizer bunny) even when your body tells you to stop.
  3. Enlist help from your spouse and children for tasks that are too difficult or time-consuming for your energy levels.
  4. Find things to do that you enjoy but won’t add to your pain burden. I can still write, something that fills me with joy, but I’ve learned I have to pace myself  because I could easily go on for hours! I have also discovered how much I enjoy crocheting, especially for others. This keeps me busy, makes me feel productive, and moves the focus from me and my pain to whomever I’m crocheting for at the time. And I have always loved to read and lose myself in a good book.
  5. Be thankful for what you are still able to do, even if it is something as simple as making coffee.

Every so often when I do get out with Rick for coffee or a meal out or to get together with friends, someone will ask how I’m doing that day. My response? “I’m here!” I think that short and sweet statement says it all.



Today’s post is dedicated to all of you who, like me, endure chronic illness on a daily basis…


Counsel is mine; and sound wisdom; I am understanding; I have strength. —Proverbs 8:14

God is Love, God is Light, God is to us a thousand things for which we long and which we need, but have we realized that in possessing Him and abiding in Him, He is “UNDERSTANDING” and all that seems dark and difficult will become clear to us as we depend on Him, who is “UNDERSTANDING”? It would take ten thousand years to learn a few of the many things we long to know on earth. The soul that is linked to God begins to understand and will go on to clearer understanding throughout the countless ages.

[Taken from Wonderful Names of Our Wonderful Lord, by Charles E. Hurlburt and T. C. Horton. Copyright © 2002 by Barbour Publishing, Inc.]

My thoughts

All my longings lie open before you, O Lord; my sighing is not hidden from You. My heart pounds, my strength fails me; even the light has gone from my eyes. My friends and companions avoid me because of my wounds; my neighbors stay far away. I wait for You, O LORD; You will answer, O Lord my God. —Psalm 39:9-11, 15

Trust in the Lord with all your heart and do not lean on your own understanding. In all your ways acknowledge Him, and He will make your paths straight. —Proverbs 3:5-6

Has anyone ever questioned the validity of your illness or avoided you because of it? Perhaps they have wondered out loud how you can look so good when you tell them how rotten you feel.

I’m willing to guess that all of us who suffer with chronic illness and pain have experienced these times. Most symptoms of chronic illness seem to be more internal than external. When we try to explain our pain level to others, they just don’t get it because they can’t see any apparent outward symptoms.

This used to greatly frustrate me until the day one of my former neighbors revealed to me that she had Fibromyalgia (FMS) too. She always looked great to me and seemed to have so much energy. I couldn’t believe she and I had this in common.

And then I realized a horrible truth about myself: what I was thinking about my neighbor was exactly what frustrates me when others think these kinds of things about me! It made me finally understand the confusion and impatience others have with me at times.

Talk about a light bulb moment!

When someone tells us they understand our pain because they are going through something similar, we feel like a weight has been lifted from our shoulders. This is the way God feels about us and our pain—He knows all about it, understands our frustrations about it and longs to carry us through it.

In the Psalm 39 passage above, David sounds weary with his situation, yet he also expresses his certainty that God is at his side and will answer his prayers. We can also be assured that God is in our corner when others are not. He is always there for us. All we need to do is look to Him for His quiet understanding and limitless love.

My prayer for all of us: Heavenly Father, sometimes we get frustrated when people don’t understand what we’re going through. But You know, and show us in so many ways how much You care about us and our situations. Help us to never lose sight of that fact, and to always look to You first for comfort and understanding. Amen.

Great is our Lord, and abundant in power; his understanding is beyond measure. —Psalm 147:5

In the sick room, 10 cents worth of human understanding equals 10 dollars worth of medical science. —Martin H. Fischer