“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 you. 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.

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.

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. 

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

Dear Friends, from Bettie G

1 – The Daily 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.

Continue reading

How to Push Past Pain to Produce Passion

produce passion

photo credit: Sasint @ Pixabay Modified by Mandy Farmer

Fibro Pain vs. Passion

As if the pain of fibromyalgia isn’t enough, the effect of said pain can wreak havoc on our personal lives. You see, it’s not just pain like a headache or even a broken bone. This pain is constant with no hope of ending. And to make matters worse the pain does not walk alone. It has “friends” that tag along as well. Fatigue, brain fog, muscle pain and soreness, weight gain, and depression are just a few of the “friends” of fibromyalgia pain.

But today I want to go where few dare to go and that is, the lack of libido leading to a strained relationship with your spouse. This is not just a problem for you the fibro warrior but probably, even more, an issue for your spouse.

Now before you stop reading because you don’t have fibromyalgia,

I would encourage you to KEEP READING

because what I am about to tell you

APPLIES TO EVERYONE – pain or no pain.

You may not want to admit it, but you may need some help in the area of passion for your own marriage.

You see, God ordained intimacy.

He created man and woman for each other and He inspired King Solomon to write a book about it. You will find his steamy love story in the Songs of Solomon. He starts right out with 

Kiss me and kiss me again,
    for your love is sweeter than wine.
How pleasing is your fragrance;
    your name is like the spreading fragrance of scented oils.

Song of Songs 1:2-3

Marriage is never a 50-50 relationship.

Continue reading

What We Need Every Hour

FMF:Need

Five Minute Friday post on Wednesday!         Prompt for the week: NEED

No matter if times are good or times are bad, there is one thing I need every hour. I can’t imagine life without this one thing. Especially now, as I struggle with chronic pain and my husband is ill as well I truly need Christ every hour.

Continue reading

Pill Drill: Never Forget Your Medicine Again

  “This is a sponsored post. I have been compensated by the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by the company.”


 

“Did you forget to take your medicine?”

“Honey, did I take my medicine?”

“How long has it been since I took some ….?”

Have you heard or said any of these questions in your home?

Are you struggling as a caregiver, trying to keep your parents in a regulated regiment of medication?

These questions are asked (it seems) daily around our place. Between my husband and I, we are always trying to figure out who has taken what when.

Finally, a gadget to help!

The Pill Drill System

Things that impress me about this product

  • Reminders with customizable tones and flashing lights
  • Easy scanning of each medication turns off the reminder.
  • I can notify a caregiver that medication has been given.
  • The mood cube is a nice touch.
  • Reporting will show trends relating to medication and how you feel.
  • It will help you to not forget to take your medicine.

 

This really may be the answer to taking medications and on time! Also, I’m thinking it will relieve some of the caregiver’s headaches! You will still have the setup time but the reminding should really be helpful.

Here are a few questions I had initially and researched.

How does it work?

Remind

PillDrill_Hub

 

The hub will play customizable tones and flash when your medication is due. The hub has a large screen for readability and buttons to search the day’s history.

 

 

 

Track

pill drill scan

Scanning tags are provided to place on each container. You may use to containers provided or place the tags on your prescription bottle. When you take you medication, scan the bottle and the hub will record that you have taken your medication.

Track Well-Being

pill drill mood

 

The mood cube can be scanned to record how you are feeling.

Notify

Pill Drill notify

The hub will then notify your loved ones or caregiver that you have taken your medication. This can be done through e-mail or text.

 

 

 

 

Questions I Researched:

  1. What is the Cost? What do I get?

Pill DrillThe cost is $199 plus shipping. Each PillDrill kit includes the PillDrill Hub, 12 Scanning Tags, 2 Weekly Pill Strips, and the Mood Cube.

This is always the first question I ask when I see a new product. I’m always thinking, “With all the money I spend on medications, how can I spend more?” But that may be the point. When you are spending all that money on prescriptions, it is all the more important that it is taken as prescribed, especially with some drugs that must be taken on a strict schedule.

And here’s a great advantage. NO MONTHLY SUBSCRIPTION. It seems a lot of things get you hooked by the nice price, but then you find out there is a subscription fee. I know that I can’t afford another monthly fee going out of my small income.

What else do I need to use this product?

You will need an electrical outlet and access to Wi-Fi. 

To set up your schedule, you will need to use a cell phone app or go online with your computer.

What platform does the app use?

Android or IOS

How does this differ from the app I am using now?

I think the Pill Drill would keep me on track a little better. The scanning device right on the pill bottle/container will help with recording. We seem to forget to record between taking the pill and getting to the phone to record it. Possibly with the pill being right with the device will help this not to be a problem.

My phone app will track everyone in the family, though Pill Drill is working on this. Also, my phone app handles everything to do with my health: doctor’s appointments, notes, vital signs, weight, ever connects with a food diary if I so wish. I can download any or all of this information to take or send to my doctors and caregivers. And it only costs a couple dollars.

Also, my phone app handles everything to do with my health: doctor’s appointments, notes, vital signs, weight, even connects with a food diary if I so wish. I can download any or all of this information to take or send to my doctors and caregivers. And it only costs a couple dollars.

Can more than one patient use this?

I believe two people could use the same device if you don’t have too many drugs between the two of you. But it may be confusing to do so.

I understand they are working to release a product to use in tandem.

Final Analysis

If you are a caregiver, trying to keep someone on track, this would definitely look into this system. I think it will ease a lot of your headaches.

If you have fibro fog or some type of brain fog, this will be helpful. As I said before the scanner is a great concept that I think would help.

You can find out more or order your own kit at www.pilldrill.com

 

Don’t Forget Your Medicine,  🙂

Mandy Farmer