notes of comfort

This Light and Momentary Pain

Interviews with Chronic Pain Warriors

I know! It’s strange to write these words [light and momentary] when talking about chronic pain. I have been in an R.A. flair most of the last year and have arrived at the place where I wonder just how much more I can take. Not that I want to end it all, but when I look at my young life and then look forward to my future, it’s hard to see a light at the end of the tunnel.

And I wonder, “Is this all I have to look forward too?” #lightandmomentarytrouble #interviewwithachronicpainwarrior Click To Tweet

“Light and momentary” comes from the scriptures where the Apostle Paul shares that when we arrive in heaven this will all seem small and insignificant. (2 Corinthians 4:17) He shares that one of the purposes of our trials is that when we get through them we can encourage and comfort others who are experiencing the same type of pain.

So this year, I’d like to offer a series of interviews with chronic pain warriors. I would like us to all share and encourage one another so that we can “all patiently endure as we suffer.” (2 Corinthians 1:6)

 And then though “we were crushed and overwhelmed beyond our ability to endure, and we thought we would never live through it.” Even when we expect that we will die, we will stop relying on ourselves and learn to rely only on God, who raises the dead. (2 Corinthians 1:8,9)

Here is the first interview with my dear friend, Bettie Gilbert. Bettie struggles with “light and momentary pain” due to RA, fibromyalgia, and a host of other diagnoses. Keep reading to learn about her struggles and her faith.

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curleque by Coffee at pixabay
interviews with chronic pain warriors; notes of comfort
image created at Canva.com with free images

Bettie, Thank you for sharing your story. You are always such an encouragement to me so I know this is going to encourage many others.

Share the short story of your chronic pain journey. Share some about the journey to this diagnosis.


In the late summer of 2014, I noticed that my fingers and thumb had some strange swelling and aching, but did not think anything about it until later that fall. I had been helping my neighbor garden and I woke up with my right hand locked up in a fiery pain that was unlike anything I had ever experienced. This happened three more times before my yearly physical in December of that year. My G.P. sent through the blood-work for Rheumatoid testing, and sure enough, 3 of the 4 markers came back positive for Rheumatoid Arthritis. They rushed me to the Rheumatologist the very next week, and I began this journey of chronic pain.
A year later I was diagnosed with Fibromyalgia and Osteoporosis. Then 3 years later I was also diagnosed with Sjogren’s Syndrome and Occipital Neuralgia.

Throughout this time, how was your faith walk impacted? Did you lose faith? Get stronger?

I ran to God with my questions and my doubts. I didn’t have anywhere else to turn, because the doctors gave me very little information about what was happening with my body. But I am actually thankful for that because the Lord has become even more intimate and close to me than He was before my diagnosis.

Was there a specific event that became a turning point in your faith during this journey?


Early in my diagnosis, I found myself apologizing to everyone that I had gotten sick. It became such a constant response in me that one day I realized I had begun speaking that to the Lord also: “Jesus, I am so sorry I got sick. I am sorry I need Your help again. Forgive me for being so weak.” About a year into my diagnosis, I began to hear Him calling me, “Come to me, come inside (The Kingdom of God is within you.) I am already here, and I am not offended by your pain.” That whisper from the Lord began such a process of surrender and fellowship with the Lord that is continuing to grow to this day.

What scripture has become a comfort for you in this journey?

notes of comfort; chronic pain warriors
image created at Canva.com free images


But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 2 Cor. 12:9

How do you find comfort during these ‘ light and momentary’ painful days?


Listening to Christian music with a heating pad wrapped around my wrist and arm has become a calming time for me. Reading books is so helpful, and I am blessed to check out the resources of hope offered at the Chronic Joy Ministry Website too.
Sometimes I watch silly You-tube videos when my mind is so foggy that I can’t keep track of anything. And on other days, when my pain level allows, writing and journaling help me to process what is happening inside of me. I try to begin every day by moving very slowly and taking the time to read Scriptures. Even if I can only read one verse, just to know that His Word is still my solid ground brings me such help.

What are some things that your family and friends do that bring comfort in your pain?


Calling to check on me, and offering to pray with and for me is a huge blessing for me. Receiving and sending note-cards in the mail has brought amazing blessings from God for me. When someone brings me a pot of soup, it feels like a gigantic gift! And my husband fills in so many things for me that I cannot do any longer. I am so grateful for each gift offered to me.

Are you participating in any ministries that encourage other chronic pain warriors?

Over the last year, I have joined with the team at Chronic Joy Ministry as their Volunteer Prayer Coordinator. I am so blessed to be able to pray for requests as they are shared at the Prayer Pond.  I enjoy sending out #PenToPaper notes and emails in response to those prayer requests. I also write posts on Scriptures and Prayer there.

Offer some words of encouragement to those who may be searching for comfort in their own chronic pain journey.


Our Lord has told us that He would never leave us or forsake us. So I would encourage you to put that Scripture to the test. Cry out to Him, ask Him for His mercy on your darkest day. And when you pause to listen, He will meet you right there to bring encouragement. Keep your eyes open to watch for moments of His beauty. What seemed small in the past, during your busy days, will shine so much brighter now, bringing God’s grace to you.

Bettie, thank you so much for this encouragement. It will help many of us as we face these ‘ light and momentary ‘ struggles. A wonderful reminder that one day, we are promised ‘no more pain’ (Revelation 21:4)

Readers, I encourage you to join Bettie at Chronic Joy. Click here for her latest Prayer Prompt. You can also respond to Bettie here on the blog by commenting below.

Mandy Farmer

Are you a Chronic Pain Warrior?

Would you be willing to share your faith story and encourage others? Contact Mandy for more details about an interview for this blog. See Guidelines Here

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”Mary-andering

Finding Joy in the Pain


Weeping may tarry for the night,

but joy comes with the morning.

Psalm 30:5 ESV

Finding Joy in the Hard Places

FInding Joy in the Hard Places
photo credit Canva
Modified by Mandy

Throughout my years of reading the Scriptures, this verse has been one of my favorites. It has brought such comfort and joy in so many hard places. When night fell it seemed that the problems always loomed much larger in the dark than in the light of day. And as my heart ached with the weight of so many burdens, I held tightly to the promise that the Lord would bring the dawn of His light–the night of the trial could not last forever. And He did bring such peace to my heart as I watched the light dawning in so many of those dark, hard struggles.

The Hard Place of Chronic Illness

However, when chronic illness fell upon me several years ago, I found this verse taking on a literal meaning that hit me in a new way. The physical pains brought new tears in the evening. Every time I lay down, needing rest so deeply, the throbbing would heighten. Every time I finally drifted off to sleep, a jolt of fresh pain would awaken me. And the anxiety that accompanied so many of the medications brought nightmares and levels of pain that finally left me weeping before my Lord.

“How long will this night last, Lord Jesus? When will You bring the rescue?”

Finding Joy in the Morning

Finally, every morning, when the rising of the sun would finally light up my window, I could hear His words echoing in my heart:

“Rejoice, my child! We made it through one more night! My own heart is filled with joy to see you trusting Me even here.”

I could hear His words, and I could rejoice in the sunlight, but I could not rejoice at the coming night that I knew would fall again, all too soon. Recently though, He has been asking me to offer even that pain in the night up to Him as an offering. It has made little sense to me until I came across these Scriptures recently. Words that again, I have read so many times, suddenly jumped off the page for me:

Looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.

Hebrews 12:2 ESV

Jesus Feels Our Pain

Additionally, Jesus endured the cross, and suffered that shame for us, but why? For the JOY that was set before Him. He offered Himself, every pain and every burden that was taken for us, and He gave it all over to God, for the joy of bringing us to His Father. Could I offer my own pain in that same way? Could I see my own sleepless and pain-filled nights as a place of offering to Him?

“Oh Lord, how I long to be able to offer it all to you? But even that offering is too hard for me. I don’t know how I can do that.”

Into the midst of my tears, He brought His Words to me yet again. This time they were ancient words, uttered to God’s people who had been long at work, obeying the Lord to rebuild His dwelling place and the wall of protection around His city. And God had called them to celebrate their place with Him:

Then he said to them, “Go your way. Eat the fat and drink sweet wine and send portions to anyone who has nothing ready, for this day is holy to our Lord. And do not be grieved, for the joy of the Lord is your strength.”

Nehemiah 8:10 ESV

Finding Joy in the Morning Through Jesus

Consequently, it was the very answer that He had been whispering to my heart every morning. It is the JOY of the LORD that will be my strength. I cannot strive to attain that. But He has already won it for me. He bore all that pain for me, and now He is the One who can show me how to offer my own pain back to Him again and again, every dark night.

And always, the morning of HIS light of Joy will dawn in my heart, because it is His gift, His fruit:

But the fruit of the Spirit is love, JOY, peace, forbearance, kindness, goodness, faithfulness, gentleness and self-control.

Galatians 5:22,23 ESV

Bettie Gilbert


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One More Thing – Featured Posts

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Here are the featured posts from October 2019 Legacy Link-up. Kudos to Tammy Kennington and Karen Sebastian.

Most Clicked

Tammy Kennington had the most clicks last month. Go check out her post What Freedom in Christ Looks Like.

What Freedom in Christ Looks Like

My Favorite Linked Post in October

My favorite post was Karen Sebastian’s post. Karen was participating in the 30-day writing challenge. She wrote on the theme “How to Live 101 Wonderful Years” in celebration of her father. This post on Joy was a perfect segue into the November theme of joy.

How to live 101 wonderful years. Joy in the Hard Places

my former life

Grieving My Former Life Before Chronic Pain

Do You Think You Will Come Back to Work?

I’m grieving my former life before Chronic Pain. Fibromyalgia and other Chronic Pain illnesses are classified as “Invisible Diseases”. For the most part, one can look at a Pain Warrior and not see anything wrong. And yet this person stops working, turns down invitations sometimes at the last minute. They seem to be checking out of life. But in all reality, they want nothing more to be in the middle of life. Often grief is part of their illness because they want so much to have their life back.

So what are we to do as a friend? Do we continue to include them in our lives and plans? Most definitely! Here’s a bit from my point of view.

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curleque by Coffee at pixabay

About this time of the year, in 2011, I lost my former life. I grieved for quite a while because I truly did miss it.

I was busy, too busy really

Let me share a list of the things I was involved in.

too many irons in the fire
Too Many Irons in the Fire
  • Mom – two children still at home
  • Homeschooling – be this time only one high school student left
  • Homeschool Co-op – Director, teacher
  • Pastor’s Wife – ’nuff said
  • Children’s ministry director
  • Sunday School teacher
  • play director – two a year
  • Bible Quiz coach
  • Regional Bible Quiz Moderator
  • Church Office Manager
  • Women’s Ministry Leader

Now, just writing these things makes me tired. But back then I was quite a go-getter. I always had several irons in the fire, so to speak. They say that those with fibromyalgia seem to be Type A personalities. I don’t know if it’s true but it is certainly true with me.

Grieving My Former Life

Grief can be very real for the one who loses everything they once loved. It’s a process and just like losing a loved one, there are seasons that are harder than others. For instance, after my husband and I left our full-time ministry, we grieved the hardest during the holidays. One thing we loved to do was create exciting services, especially at Easter. It’s probably still the hardest time to go to worship and only be a participant rather than the leaders. I wrote about this not long after Michael retired.

It Just Takes Time

The rawness of one’s loss can be very difficult to bear. Dealing with the “why’s” and the “how did this happen” and “what did I do to deserve this?” On top of that, we just missed those activities just as you would miss your loved one when they are gone.

One of the first things I did was start a blog. I came across a challenge to write every day for an entire month. So, I decided I would write about my journey with Chronic Pain. I wrote about the pain, the waiting, the doctors and more doctors. I dealt with the process of the Why’s and the How’s and the Now What’s?

This turned out to be very therapeutic. Not only have I been able to help people become more aware of my illness but it turns out that writing about the frustrations of chronic pain helps relieve the pain.

Plus, I have met a world of new friends, literally from around the world, an unimaginable support group full of love and understanding. They also became my greatest cheerleaders, encouraging me to keep writing. They shared new things they had learned and connected with me because of our similar issues. (I also found that I didn’t have much to complain about because there are many people who have much worse issues than I have.) Two of my favorite Facebook groups, Fibro Bloggers Directory and Medical Musings with Friends.

Lessons from Flat on Your Back

For the first few months, I was flat on my back, unable to even roll to my side without a great deal of pain. I had to drink my meals and have assistance doing all those normal life activities like using the restroom and taking a bath. Believe me, this was hard to take for this Type-A girl.

But while on my back I did a lot of reading and assessing my life. I found myself getting much closer to God, realizing that in some ways I had left Him completely out of my life. Instead of placing Him in full control. I spent a lot of time reading The Holy Bible. I set to reading it through in a year and ended up reading it three times in three versions.

My favorite book was suggested by a friend. I had heard of it but never read it, Now that my pain is managed well, I sometimes slip into grieving my former life. I begin to wonder, “If God is my Healer, Why Am I Still in Pain?“. I wrote about that recently.

But I know this new life is much better. Walking with Jesus step by step, day by day is wonderful. Having this pain is like having a reminder of WHO is in control. And it’s not me!

People will often quote Romans 8:28 claiming that God has a plan. And yes! He does have a plan. I don’t believe that God caused my disease, but He did allow it “for my good”. I may not see the reason why in this lifetime, but I will see it from heaven and rejoice. So I will do as Jesus did as he faced the cross.

“Let us fix our eyes on Jesus, the author, and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God.”

Hebrews 12:2

God can take anything that happens and turn it into good. Are you trusting Him with your trial today? Whether it’s pain, or sickness, or loss He can turn your tears into rejoicing. He sees the whole picture and His plan is a good one! Trust me on that.

Mandy Farmer

P.S. I have created a verse of the day calendar for October. The scriptures are all about comfort. Download it for free by clicking on the image below.

October Calendar

Suggested Reading {affiliate link}


opioids forfibromyalgia

Supplements: Good, Bad, Daily Decisions


Question: Are you taking any supplements for fibromyalgia? What about Opioids?

With all the discussion about the opioid crisis, I thought it would be great to get some feedback from other fibro warriors about opioid use. Heather Calvert has written to us on how she chooses her supplements and how she manages opioid use and determines if an opioid is even necessary.

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Dear friends,    

I am so excited to say that today is a good pain day.  I woke up relatively refreshed and a little stiff, but not miserable.  I’m excited to have a good day and actually enjoy living my life!  This is the first day in several weeks facing the day did not involve a sense of dread and anxiety.  You see, the last few weeks I have battled my most severe fibro flare in years. The pain was excruciating, nausea and IBS are disruptive and embarrassing, and the fatigue is overwhelming. I’m 43 going on 103 on those days!  The best news is today I only have to take my maintenance meds for asthma, reflux, and allergies, as well as my usual supplements for energy and focus.

 First, I should explain that I absolutely despise taking medicine of any sort, especially those that affect how clearly I think or that result in grogginess (think about the “My cold made me do it” commercials).

  • Unfortunately, I have adult-onset asthma that started in my 30’s that requires one pill and an inhaler twice a day to prevent attacks. 
  • Second, I have GERD treated with a single pill each day to prevent the belching, nausea, and vomiting that occurs if it gets out of control. 
  • And of course, I live in the south where pollen season is our fourth season so practically everyone I know takes allergy medicine daily! 

Supplements for Fibromyalgia

My supplements are based on years of trial and error, and with the support of a great family doctor who listens and offers alternatives to prescriptions, I have finally discovered a combination that seems to help.  I don’t just willy nilly take random pills to see what happens!  My husband and I do tons of research and discuss ideas with my doctor before we try something new. 

D-Ribose for Energy

  D-Ribose is the difference between my having the energy and stamina to trek through an amusement park with my family and friends and me being stuck at home on the couch while everyone else has a good time.  Research shows D-Ribose was initially used for cardiac patients to help improve cardiac function.  It gives the mitochondria (energy producers) in your cells a form of sugar that is easily converted to energy.  I was skeptical at first, but it definitely works! 

Daily Supplement

My other daily supplement is Focus Factor, a blend of magnesium, B vitamins, and a whole bunch of stuff I can’t pronounce.  Originally marketed as a treatment for ADHD, this supplement fills my body with vitamins and minerals commonly deficient in fibro patients so I only have to take 2 pills twice daily instead of a handful of vitamins multiple times a day. 

So, a good fibro day means 4 pills with breakfast, 3 at supper, and 2 a bedtime.  Woohoo- that leaves room for dessert!

a good fibro day means 4 pills with breakfast, 3 at supper, and 2 a bedtime #fibroawareness #thisisfibro #chronicpain #opioidsforpain @heatherc Click To Tweet

               

I know, I know – why am I excited about only taking 9 pills a day? 

Well … on a bad day, let’s just say there is no room for dessert! On top of my usual 9 pills, there’s a  myriad of what we call my “crisis” meds. 

  • Prescriptions for nausea and IBS,
  • muscle relaxers,
  • migraine treatment,
  • and the ever-controversial opioid for pain. 

Why do I choose to take an opioid in what is identified as an “opioid crisis” by the media? 

To be honest, I hesitate every time.  I choose to be an informed, cautious user.  In fact, I refuse to have personal access to my opioid medication.  It stays locked up in a small, fireproof safe that only my husband has the key for. 

In fact, I don’t even know where he keeps the key! When I think I am to the point where I need the “crisis” med, my husband and I sit down and discuss what other options I have already tried and how severely the pain is affecting my ability to function. 

We are well aware that abuse can lead to addiction and overdose.  We also know that with teenagers in the house, misuse is a high risk.  So, together we make the decision to keep it locked safely away and when to use it. 

 How do we know an opioid is absolutely necessary? 

To be honest, the pain must be completely and totally overwhelming me.  And I’m not talking the can’t get comfortable, no sleep, crying kind of pain.  I’m talking the can’t even make words, just barely groaning kind of pain.  The truth is, I should probably take it sooner, but a family history of addiction often clouds my judgment.  We know it was the right call when the pain eases and I am actually more alert and active, not in a medication-induced fog. 

 Being a fibro warrior tests your ability to think critically and creatively for solutions. 

The good: supplements with low side effects, finding a doctor who listens and is willing to try new things, prescription meds that are available for treating symptoms, a husband who is just as invested in my treatment as I am. 

The bad: fear of addiction that forces me to suffer more than necessary, cautiously treating a myriad of symptoms on flare days, anxiety that I may be viewed as a lazy, addicted, drug seeker. 

The daily decisions: never-ending research, choosing to face my fears even when I’m exhausted, trying alternative treatments, brutal honesty with my family and doctor. 

#Fibro – the life-changing, life-challenging diagnosis.      #Fibromyalgia #supplements #opioids @heatherc Click To Tweet

Heather Calvert, Fibro Warrior


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why Not Eat Better

No Sugar Tonight: Fibromyalgia and Diet

Question: Wouldn’t you have less pain if you just ate better foods and lost weight?

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OK. It’s True! 🙁

… I am a sugarholic. I love sweets and have very little willpower to resist them. If it’s there, I want it. I’m doing some better but it is still a challenge.

But to be honest,

I have yet to have a doctor tell me to eat more healthy or tell me to cut out sweets or fats. I have only received guidance through a holistic nutritionist, a representative to a nutritional product, and through reading on the internet. I’m going to leave most of the advice to the professionals, but I do want to take some time to talk about sugar.

Continue reading

“What Happened to your Faith? I seldom see you at Church.”

It’s easy as a church member to become judgmental when someone begins missing church too often. But many times there is good reason for their absence.

I’d love for you to read Shona Smith’s letter below. I met Shona through a mutual blogger who featured her a few weeks ago. Read Out of Sight, Out of Mind

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Dear friend from church and /or confused family member,

Do you know what I would love to be doing right now?

Dreams

  • I would love to be dancing in God’s presence and singing at the top of my voice as I lead others into His presence.
  • Or be racing out the door with the kid’s work and playing energetic games with them. And then having a deep satisfying discussion about the things of God and praying with them.
  • I would love to have gotten up early this morning. Spent hours in preparation for some delicious food in order to invite some random church people back for fellowship and an afternoon chatting and relaxing in the garden.
  • Oh, to be offering to have a friend’s children for her, even overnight, to give her and her husband some quality downtime.
  •  What would it be like to have a pristine house where food could drop on the floor and not have to be immediately thrown away?
  • I’d love to be baking cakes to invite you round to share with me…and for us to while away a couple of hours chatting about nothing in particular but feeling encouraged and refreshed afterward.
  • I would love to spontaneously drop in on our grandchildren and whisk them away for dinner with us.

BUT THIS IS NOT MY REALITY AND IT WON’T BE UNLESS I RECEIVE A MIRACLE!

What I'd Like to be Doing ... But this is not my reality and it Won't be unless I Receive a Miracle. #thisisfibro #chronicpain Click To Tweet

Reality

I’ve spent the last few years trying to find a new reality in the midst of

Managing fibro pain

Photo credit: National Lupus and Fibro Association

an illness that means some days I cannot find the energy to get dressed, let alone shower. My condition means that the thought of holding a short but deep conversation with one other person in the quiet of my home can fill me with horror because I know it might cost me all of that day’s energy. Every decision I take, every action I make has huge implications for the rest of my day or even my week. (See Mandy’s link on the subject)

On my very bad days, I cannot manage to stay upright, talking or reading or even watching TV and rely on others to bring me a drink and food in bed without talking to me.

On my best of days, I have to make careful decisions all day long about everything which will use my energy: showering, cooking, Facetime with my mum, reading, shopping, housework, conversation with my husband and family: everything costs and if I “overpay” the “interest rates” in payback can leave me bed-bound again for days or sometimes weeks.

 

Church Reality

When I make it to church it has been a really good week. There has been resting for at least one day before it and there will be resting for the remainder of Sunday and most of Monday. I often cannot manage to socialize or stay for a whole service as sitting upright, singing, loud noise, lots of people, chatting are all activities which use a lot of energy. If I have made it to church to join in, I often don’t have the energy to stay and socialize so I have to choose how long I will be there.

This is not the challenging bit…

Sometimes I am feeling quite strong and well so I stay out for a bit longer, chat away with people. I pray out loud in the service. Stand and chat over drinks after.

And all the while I feel fine BUT the next day or two days later I am unable to get out of bed or shower or talk and that may last for up to a week. It’s called PEM – Post Exertional Malaise – and it just comes on after any increase in my limited activity. I can stand for longer than usual, be squat down at some task for a few minutes, spend longer than usual cooking or stirring something and then two days later.

It’s like I’ve been pushing it too hard at the gym …it’s the equivalent lactic acid build up… my body prefers anaerobic production of energy to the muscles… and pain causes a “short circuit” so my batteries won’t recharge at all when I am in a lot of pain. It would take too long to explain it all but you can read some more about the challenges of attending church in my leaflet, “Christians with Chronic Illness“.

How’s my Faith?

So, what’s happened to my faith, the “doing, loving, running things, lots of ideas and activities, dancing, exuberant praising faith”?

My faith is still here. It’s kept me alive; it’s allowed me to hope that one day there will be more to my life again, it’s battled through dark lonely days of pain and crushing fatigue and feeling worthless. My faith has allowed me to find purpose in praying for and encouraging others. My faith has become something I am much more than something I do. (Mandy’s faith with Fibro)

What's Happened to my Faith? It's Still Here. It's keeping me Alive. Click To Tweet

When I Can’t Do What I Want

When I am frustrated by wanting to do something to love others but simply not having the energy to do it, my pastor recently encouraged me to tell them what was on my heart, even when it isn’t possible, because it encouraged him to know I had thought of the act of love or kindness. I was so encouraged by that word…someone seeing my heart and being encouraged by my desires even when I couldn’t carry through!

My faith has allowed me to celebrate the small things. The days when I can stand up long enough to make a meal or join in with a song at church; the days when I can drive to do our grocery shopping; the moments when I can have conversations at church and make friends; the moment when I was able to join in with a game with my grandsons. Despite the fatigue, sleep doesn’t come easily, so I often pray in the night over family and friends and whatever is on my mind… precious still moments with God when I hear His heartbeat and know I am partnering with him in the stillness.

Not all Roses!

My faith has also been battered. Why does God put so many ideas and thoughts in my heart when I don’t have the capacity to do any of them? Why did He give me gifts in teaching and leading and planning when my brain is now so often in a fog and I can be sat watching TV for hours and not even take anything in? I have no idea BUT I am learning to trust Him that He continues to have “good works which He has prepared in advance for (me) to do.” (Ephesians 2:10)  (See Mandy’s letter, If God is my Healer, Why am I still Sick)

What has happened to my faith?

I’ve been on a wilderness journey and been through all the emotions of grief for my old life, the shouting angry hopeless flailing that just “gets it all out there” and I am finally finding a stillness and a glimmer of hope that God knows exactly what He is doing and He has a plan… and I just want to do His will!

Wishing to be with you,

Shona Smith

Free Download

Download Shona’s helpful flyer for more ideas on How the Church Can Help The Chronically Ill.

Tune in for Shona’s interview on Premier Radio Woman to Woman on 22 May, at 11am GMT (http://www.premierchristianradio.com/radioplayer

More information about How to Help the Chronically Ill


Fibro Awareness Jewelry

Click here and scroll down to “Soft Hugs” to purchase. https://kristinafarmer.magnabilities.com/catalog/custom-inserts/

volunteering with fibro

Volunteer with Disabilities like Fibromyalgia & Chronic Pain

Question about Disability

Can you volunteer your time while being on disabilities like fibromyalgia and chronic pain?

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Letters to Friends, Volunteering
image credit: free @ canva modified by Mandy

Hello, My Friends,

I wanted to share with you what it’s like to live with Fibromyalgia, yet still, be able to volunteer. I wasn’t sure that I would be able to volunteer with a disability when I first went on disability from work, because I was bedridden for a long time due to pain and fatigue.

Over a period of several years though, my treatments of medication and gentle exercise, etc. began to work and I found myself feeling well enough that I knew I wanted to give back to the community again. I just needed to
find the right way to do it, so that I wasn’t overwhelming myself too much.

Over the years my chronic pain was managed and stable. #volunteering #disability Click To Tweet

Great Volunteer Organizations

I found a great organization in my home province of BC called Patient Voices Network. They give everyday ordinary people the opportunity to have a say in how health care is delivered in the Province by allowing us to be Patient Advocates when Health Care Organizations are looking for the Patient Voice in their engagements.

  • This can be done in many different ways –
  • being part of focus groups,
  • surveys,
  • committees or
  • councils and so much more.


After becoming a member of PVN, I immediately jumped in by becoming involved in a committee that was working to improve surgical outcomes for patients with colorectal cancer. I helped to develop a DVD that all patients would receive along with a booklet outlining what to expect as they started treatment, right from the moment of diagnosis all the way to follow up
after surgery. Since then, I’ve been invited to several forums, I’ve participated in some surveys and focus groups and I currently sit on 4 different committees, one virtual reality testing group and one Provincial Survey Measurement Working Group.

Doing Too Much with Chronic Pain

Everyone says “oh, you do so much”, but my actual time commitment is really not that much. One committee meets quarterly, one meets bi-monthly, and for some of them, I don’t even have to travel as I can join them online. I do travel to Vancouver from my home in Langford for 2 of
the groups, but my expenses are all covered, and it’s fun to meet with my teammates in person.


I get such a great sense of satisfaction being able to give back to the community in this way. I know I’m making a difference to others with the work I’m doing, and because I’m able to pick and choose what I want to commit to, I am able to maintain my own health at the same time. I have plenty of time to rest so my Fibromyalgia stays under control, and if I’m not feeling well for some reason, I can always call into the meetings that I normally attend in person.

I highly recommend looking into Volunteer work for anyone with Fibromyalgia as there are many ways you can assist others while still taking care of yourself. Find something you are passionate about, and see if you can make it a part of your life. It helps get you out of the house, keeps you active and involved, and helps others at the same time. Don’t know where to start? Here’s a website that may give you some direction. Sixty and Me

I hope you find it as enjoyable as I do.


From my heart,
Pamela

volunteer with disability, fibromyalgia, chronic pain
image credit Canva. Modified by Mandy

Thank you, Pam, for sharing with us about volunteering. This is a wonderful way to get out and do something for others.

What About You, Readers?

How are you get out and doing for others? What volunteer organizations do you recommend? Share in the comments below.

If you are in the USA, I found this website that gives a lengthy list of Volunteer organizations with which you may be able to get involved.

Have More Questions About Fibromyalgia?

Letters to Friends ~ How Are You Doing Since Your Diagnosis?

Letters to Friends ~ Why Are You So Tired?

Letters to Friends – Where Does Fibro Pain Hurt?

What is Fibro Fog? Why are you Crashing?

What Were Your First Signs of Fibro?

Is There a Cure for Fibromyalgia?

Book Review

What I Learned from The Pain Companion

I was given this book, The Pain Companion, as a gift. In return, I am writing this review. I am not otherwise being paid and the thoughts on this post our my own.

Some links in this post are affiliate links, meaning, at no additional cost to you, we will earn a commission if  you click through and make a purchase. 

the pain companion book

What if there was no pain.

For some of us that would be like heaven. But really? Do we want there to truly be no pain? We might want to rethink that. What if you touched something hot but felt no pain. What if you kept pushing yourself to work, run, play without feeling pain? Not exactly a good thing, right? Continue reading

my life with fibromyalgia; fibro warriors, letters to friends about fibro life

A Day in the Life with Bettie G

first published on GGMandy blog

A Day in the Life of a Fibro Warrior

As promised, here is the first letter; written by one of my dear fibro friends, Bettie Gilbert. I am sharing these letters to help you better understand what fibromyalgia is doing to us. I met Bettie through blogging. We were both writing about our chronic pain and we realized that we were on the same journey together, both of us having Rheumatoid Arthritis AND Fibromyalgia AND we both have roots in Ohio and Wisconsin, too! Isn’t that neat? Read her words here. Maybe they will help a little as you try to understand what is happening to us and how you can better relate. God Bless.

Mandy Farmer
divider
curleque by Coffee at pixabay

Hello, My Friend,

Bettie Gilbert A Dau in the Life of a fibro Warrior

I am so thankful that you asked how I was doing the other day. You see, on many days it’s hard for me to get out, and I really do appreciate your concern. Sometimes when people look at me, it’s hard to tell that anything difficult is going on because much of the pain I feel is not outward. That’s the way with Fibromyalgia: it’s called one of the “invisible illnesses.”  But my Rheumatologist has given me a real diagnosis, and the pain of Fibromyalgia Syndrome is often complex and hard to understand.

Could I share with you what some of my fibro days look like? Click To Tweet

When I wake up in the morning, usually it’s a struggle to get out of bed.  Even if I have slept, (but many nights I do not sleep well,) I still wake up dragging and feeling like I am walking through concrete. My Doctor has told me the term for that is “un-refreshing sleep,” and is common with Fibro patients.  After I have my breakfast and my one cup of coffee that I allow myself, I might get a burst of energy and feel like I can finally catch up on some of my activities.

However, from past days in my life,

I know that I had better pace myself, or later on, I will pay for overextending myself with “post-exertional-malaise.” That’s the term for the over-exhaustion and pain that will likely hit fibro patients 24 to 48 hours after a time of physical exertion, or even heavy emotional stress.  Because Fibromyalgia is a dysfunction of the nervous system that remains in a constant state of “fight or flight” the edge of that nervous system is usually quite close to the surface.  It’s important to balance short times of activity with times of rest in between.

I have been trying to listen to my Doctor’s advice, to be more aware of my limits, and to be kind to my body during this season of chronic illness. So if I sometimes have to cancel our plans, maybe you can better understand where I am coming from.  I don’t enjoy missing out on many of the ways that we used to connect. But I pray that we will find new ways to stay connected and that our friendship remains intact even through these many changes.  Having the support of people who care for me is a blessing that I do not take for granted.

Your Loving Friend,

Bettie G

Read more of R.A. Seasons by Bettie Gilbert

Could I share with you what some of my days look like? #fibro #thisisfibro #fibromyalgiaawareness Click To Tweet


Reminder :  I am a patient, not a doctor. What I am sharing comes largely from what my doctors taught me and some of what is discovered in my own research.
The purpose of this series is to inform. I pray you will be informed enough to support friends with this syndrome or possibly acquire informed questions for your doctor. Please talk with your doctor or visit the Mayo Clinic website for official information, diagnosis, and treatment.