Guest

The Walls of My Home Are My Constant Companion

by 47 Comments  •  
Download

As my 12 year old daughter Damaris and I participated in the (in)RL conference several weeks ago, I cried buckets watching Sara’s story.

I cried for numerous reasons.

I wished I had known Sara before she journeyed into Heaven. I grieved with those who were so affected by her words and those who hold Sara close in their hearts. And finally, I cried for me. You see, I could relate to Sara’s story because I spend much of my time homebound.

Homebound, that’s a word that I would never have imagined would describe me. Such a strange word, so sad, so foreign, so isolating, so alone.

I mean, I’m 34 years old. I’ve been married for almost 15 years and have an almost 13 year old daughter. I loved to run and swim and spend time with friends and family and as much time as I could with our church community.

All that has changed because I now have several chronic illnesses, the worst of these by far being fibromyalgia (a disease which includes many issues such as chronic widespread pain, fatigue, and sleep, memory, and mood problems). I went from doing the work I truly loved (working full-time as a hospital chaplain) to being in a wheelchair most of the time in order to work to not being able to work at all.

My life has drastically changed.

Now, I typically leave the house only one or two times a week for only a few hours at a time (to attend church when I feel up to it and to go to the yarn shop), and only after resting up for days in order to venture out. I have moved from having a very active life full of ministry, exercise, getting together with friends, etc. to spending most of my time in bed or my recliner being taken care of by my hubby and daughter.

Watching Sara’s story, I connected with what we have in common.

But Sara and I have a difference as well:
~Sara didn’t let her illness stop community from happening
but I have been letting my illness stop community from happening.~

I have allowed my pain and fatigue and the walls of my home to become my cave. I venture out every once in awhile when I am at the place where I just can’t stay inside any longer, but then it’s back to my dark corner where I feel alone and not heard and not seen.

Seeing Sara choose joy in spite of her circumstances, in spite of her health, in spite of everything that could have stopped her is giving me a new perspective. Honestly though, it is a struggle. It is hard to find community when the walls of your home are your constant companion.

Choose Joy

I know I am not alone in this struggle. And so I write these words, knowing there are others within the (in)courage community that are in similar situations. Sisters, let’s choose to choose joy and come together to form the community that we all need, that Sara found, and journey through this life together.

By C.C. Almon, “I’m On My Way ~ my journey as a Christ follower, wife, mamma, & fibromylagia fighter”

Image Credit: Home Alone by lobbiaz on Flickr

Leave a Comment
Download
Subscribe to daily words
of courage & hope.
C.C. Almon
About the Author

Christ follower, Russ' wife, Mamma to Damaris (& 3 in Heaven), & fibromyalgia fighter ~ Lover of all things pink, Gilmore Girls, knitting, & coffee

(in)side DaySpring: things we love
& you will too!
Find more at DaySpring.com
(in)side DaySpring:
things we love
& you will too!
Find more at
DaySpring.com
Recent Posts

Reader Interactions

Comments

  1. I’ve always been amazed by people’s ability to let God bring them joy in spite of their difficulties. I’m afraid it’s a lesson I have a very hard time learning.

  2. I am hoping you find peace, happiness, joy and comfort from a loving Heavenly Father. Community starts with you. Hang in there.

  3. I was diagosed with fibromyalgia a few months ago. I had toxemia with my third pregnancy and never bounced back to normal. I struggled with chronic pain in my arms, legs, and feet daily. I didnt want to leave my house and even get out of bed. Most days I sat in a recliner all day long. I was miserable. Depressed. Defeated. However one day in church God prompted the pastor to have us call out for what we needed changed in our lives and I cried out for a healing. That day I visited a friend’s Amway grand opening and she was telling us about these vitamins that had relieved her constant migraines, I was intrigued,so my husband and I decided to start selling Amway products as well. A few days later I too started taking the vitamins and after 5 days of adjusting I too felt almost 100% better. I still have some pain in my feet and I get tired, but nothing like I did before. Don’t get me wrong if we have a full day of activity I am usually down the next day, or at least a little slower. but I truly believe God put those vitamins in front of me in order to give me my life back. Its an everyday commitment, but I look forward to total healing, and I am thanking Him the whole way. I pray you find your healing as well. Fibromyalgia does not come from God, and it is not want he wants for us. Keep seeking.

  4. Thank you for sharing this…I needed to read this today. You see, I had a nasty case of glandula fever when I was 13 (I’m 31 now) which I never recovered properly from. A year or so later I found out that it had developed into Chronic Fatigue Syndrome (which I’ve had ever since). Just recently I found out that I also have mild fibromyalgia.

    Over the years we have moved around a bit due to my husbands work. I love the town we live in now (been here 3 1/2 years), its a really beautiful place. Though the people here are lovely, all the other women my age are sooo busy. I have found it hard to form any deep friendships because quite simply I cannot keep up with the lifestyles they all lead.
    I have cried out (quite literally) to God about this many times and although I have not yet advanced too far with any friendships – He is doing a work in my heart. teaching me to be at peace and grateful for what I do have and to choose joy…thank you again for writing these words of encouragement. Bless you heaps :o)

  5. Hi! I also have fibromyalgia and have been dealing with it since 1980 ( I was first misdiagnosed with RA) the disease is not progressed for me in the same way as it has for you, I often feel frustrated with my body and limitations. Because the work I love and can do is at home, I also feel lonely. I might go an entire day(s) talking to no one but my cats and husband. Part of that’s on mr, I know. (there was a “beat-down” by “friends” that has me a bit wary. I was reminded recently by the in courage bloggers that we need to go into relationship realizing that we will be hurt. Ouch!)

    However, I don’t want to leave this without saying that one of the great gifts that fibromyalgia has given me is the clear message that there is no free lunch. Everything costs something. Some times the price is high. Doing X will cost not only the day to do it, but the two days after. Is it worth it? For me, when I say yes, it is often because it is about being in community.

    The other thing that I want to say is that I don’t know any one that I have known or heard of as getting disability upon the first application. I’d encourage you to keep trying. (I have no idea what more basic things you could perform. Some days, getting clean and dressed constitutes a full day)

    Hugs in Christ
    Cyndy

    • Thanks for commenting Cyndy. You’re right, there is a cost and some days I have to chose whether it is worth it to get out or not. It’s hard to fight through the pain some days, but some days it is worth it in order to find community. Thanks for the encouragement about disability. I have started the appeals process and pray that it will work out. Blessings to you!

  6. C.C.

    May you find peace & joy in an on-line community & not feel so alone all the time.

    Reading Sara’s & your story really brought tears to my eyes. Not because of your struggles, but because of the joyfulness in which you choose to live life & not complain about or sweat the small stuff. Patience is a lesson I have yet to learn & finding joy in small everyday things is still a little hard for me, but God is doing a work.

    I pray God’s blessing s on you and your family!

    • Thank you for your words Beth. Some days it is really hard not to complain and to choose joy. I’m reminded of one of my favorite quotes from Anne of Green Gables, “Isn’t it nice to think that tomorrow is a new day with no mistakes in it yet?”. Each day is new and I have to choose joy on a daily basis. Blessings to you!

      P.S. Patience is difficult for me, but I have found that I am much more patient since I started knitting so much. Sometimes people say that you must be patient in order to knit, but I know for me, I am patient because I knit. 🙂

    • Jenni, when I saw your comment come through with your name attaced, I had a flicker of recognition. I went to your blog and realized that you and I know each other!!!!! About 13 years ago, my husband Russ and I lead the Christian Miscarriage Support Group online website. I’m so sorry to hear of your health problems of late. Blessings to you sweet one!

  8. I have fought fibromyalgia since 2005. My entire life changed. I was on ten medications until I started taking God’s word. In November I was on ten medications and in the ICU. Then I read this book by Dr. Murphree. Treating and beating Fibromyalgia and Chronic Fatigue Syndrome. Today I take no prescription medication, and life is great. I still have a long way to go to get over the fear of trusting God as Healer and provider. I have been on disability income, but I know it will not be long and I will be graduated from Oral Roberts University and ministering full time. We can touch the world from within our four walls with prayer, a call, a blog, and Sara was a beautiful reminder to me to choose JOY. God bless. Google Dr. Murphree. How God is using him is amazing.

  9. I feel for you. In the last few years I had mono, undiagnosed. Both the fatigue and the resulting anxiety kept me housebound. I’m thankful that God is healing me, but I still feel safer behind the walls of my home. Yet feel trapped too. Sara’s story has also encouraged me — the joy she chose. How she chose to be mindful of God’s promises instead of her situation. That’s something I’m working on.
    I know you probably hear about many helps, but I have recently learned about a link between fibromyalgia/chronic fatigue (from a psychiatrist who has dealt with these issues) and a gene mutation which doesn’t allow folic acid to cross the blood brain barrier. It is a rather new research, but if you are interested you can find more by googling “MTFHR gene mutation.”

  10. C.C., thank you for sharing your heart so openly. Sara was so inspiring to me, too, in her encouragement – just by the way she lived her life – to choose joy and choose community. Those choices are hard, sometimes, for me. But so worth it when I do! I can’t imagine how I would feel or what I would choose if I were facing circumstances like Sara’s or yours. But I think you are brave for taking this step by writing, and I pray you find ways to build community in your life, in your home, in your heart.

  11. Thank you for this brave post, for letting us in and sharing your story! We all have different kinds of walls and we need each other so much.

  12. thank you. not that i want others to suffer. but it helps me to know that others understand because the suffer similarly

  13. It’s so easy to stay safe isn’t it? I live with severe COPD and I’m on oxygen 24/7. Getting on with the business of life takes a lot of energy and sometimes it’s just so hard. Thanks for the reminder and the invitation to choose joy. I’m going back to Sara’s blog for some inspiration. Gitz certainly had it right! I am right where God wants me to be….he has given me gifts…now I need to use them….even from home!

  14. I’m so glad you wrote this. I have had fibromyalgia for 13 yrs and I’m on disabililty. Yes, I did get it through the first time, but I think I got very blessed in that way. As I think you know, different things are helpful for different people. I have nothing to offer in that regard, but want to lend my support to you. It is easier to stay at home and kind of stay in our caves, but I want to encourage you to reach out when you need to. If I can be any help–just a listening ear or whatever, let me know. Blessings to you.

  15. God Bless you for your honest post about chronic pain and how we let it get the best of us when we least desire it. Fibromyalgia is one of my diagnoses, too, along with spinal arthritis, spinal stenosis, SI joint arthritis, many more places since I’ve stopped getting x-rays, but I know the pain symptoms. My asthma has gotten bad again, I spent 9 days in the hospital on IVs into April. Now my body has decided to be a barometer, not liking at all HHH (hazy, hot, humid) so that’s what we’ve got in abundance. I’m grateful, though, not to be in a drought stricken part of the country. I, too, am trying to get out of my walls more, but keep getting knocked back. I’m so chicken about trying to find a new church with A/C.
    Would you consider sharing on my blog?
    Love in Christ,
    Janet

  16. As someone who went from a Type Triple A lifestyle, with work and church and kids and volunteering and everything in between to someone who was horribly bound by the limitations that I allowed to be put on me from the CFS, fibro, Addison’s, kidney disease, asthma, depression, anxiety………I truly kept seeking because it has long been my belief that I was missing a key (or three) to what was causing everything. Because how did someone who only had an underactive thyroid become so compromised immune-wise, with two different sleep apneas and all the other junk?

    So, I’ve tried many things. Most I still use, like chiropractic, massage and reflexology, because I am all about getting rid of the toxic junk inside of me, physically AND spiritually and emotionally (which I’m working on), and if it helps me have a good day, then I go for it, you know? I finally got a decent rheumatologist who found that one of my vitamin levels was low. She respected that there was a medication I had tried and was allergic to (landed in the hospital with blood clots because the allergic swelling was so bad!), and has been quietly encouraging me these past 5 years.

    Last year, my life turned upside down and leftside right when the marriage I thought was from God disintegrated around me, and the children we had adopted claimed he was being abusive and hitting them. They landed in foster care because he used my health against me, and eventually, despite the fact that my health has steadily improved? He got custody of the children.

    I am realizing that there are days when, for no reason I can fathom, the fatigue pulls at me like molasses and no amount of nuvigil or caffeine or anything like that will keep me awake. But, where I used to be pretty much confined to the house, now I am out. I have enrolled in college for the fall semester and am continuing my weight loss adventures (heaven help me there…..lolol) and LOVING it when my doctor says yeah, we can stop this med or cut that one back.

    Keep pushing for the answers. God will lead you to the people and providers you need to find your keys. I know how heartbreaking it is to see those you love going out the door to “have fun” and you sit there with a fake smile and then when they leave, you cry and try to find something on tv. Thank you for being transparent with your struggle and journey.

    Today? I choose joy. Because happiness is bound up in my circumstances, while that joy that permeates my very soul comes from Him. He will use you where you are.

    God bless you!

  17. You inspire me. How often do those of us who have no physical ailments at all take our bodies for granted? And still grumble. Shameful.
    Praying for God to give you the strength and the courage to reach out and go for it. Confidently knowing he will make it worth your time and energy, tears and hardships. There will be great blessings for you. Go get them!

  18. Your story sounds so much like the way my life used to be. I was on Social Security Disability for 5 years. I started out flat on my back for months not being able to care for myself. My husband and kids did everything for me. It all started so suddenly. One day I couldn’t even stand up anymore. My doctors called it many different things but they all wanted to treat it the same. I decided to just put my whole self in God’s hands and asked Him to help me use that time to become closer to Him. I definetly became closer to Him but not in ways I had expected. My husband decided he didn’t want to live like that and left me and our children. I had to depend on people I didn’t really even know for rides, house cleaning, etc. My children started to care for me when they should have been enjoying their childhood years. We all became depressed and distressed. But God brought us through it all. At the beginning of each new year I asked God to help me learn something new that year. One year it was obedience. Another it was to learn how to be truly joyful. After 5 years on Social Security I decided to go off disability, and off spousal support, and just depend on God to get me through. I started to work 2 half days a week and eventually made it to full time. There were times I could hardly work because of pain and fatigue. My father was ready to put me in a nursing home so I could be cared for. Its 25 years later, my kids are grown and have their own kids. I am still trying to work but know it has to end soon. Some days are still a struggle. But many days are pure joy because of what Christ is doing in me and with me. I know many people will never be able to do what I did because that is not God’s plan for them. But I am so grateful God chose to let me get out of myself, let me learn more of who He is and what He can do with my life, and let me enjoy more life than I ever thought was possible. I still struggle with trying to get ahead of God and deciding how my life should go, but when I just let go and let God be in control my life is quite wonderful.

  19. Last Friday, gardening through my property gave me a chance to meditate in how my deceased husband, Paul, worked intensively to have our place in order to receive new residents and to keep up it tightly. Our new roomate was added to the group of three families at the 4-Plex. I was proud of doing the whole work from the add to the cleaning as I was celebrating Paul’s life. Late in bed, I hit the bottom of the loneliness and emptiness of a life with my companion for almost sixteen years. I wept for over three hours as ever before. The pain in my left foot threw me out of bed for some painkillers and tea. I’m asking God to keep me as the apple of his eyes and hide me under the shadow of His wings. The flipping over of the car accident showed how the Lord cares for me. I’m waiting for His providence.

  20. I too have fibromyalgia, though I believe mine is a milder form–at times. I too struggle with the negative. It’s so hard to be positive when pain cries out for release. In the beginning when I was bedridden much of the time and my hubby had to do my work for me (a stay-at-home grandma), I cried out to God. And He gave me a new ministry–praying. Now this shouldn’t have been NEW, but the time I could now spend in prayer magnified God in my sorrow. I have a few women I pray for, esp. in the middle of the night, and I know they pray for me. It helps to tell someone, I’ll pray for your pains/illnesses. Will you pray for mine? That way I can focus on God and someone else! Anyway, I write this to say that there can be missions/ministry even in the pain, in the homebound-ness. I’ll pray for you!!

  21. Thank you for sharing your story. I struggle at times and put that wall up also. This has put a new light in my life and I know things will get better! Thanks!

  22. Thank-you for sharing this. It helped me knowing that there are other moms out there suffering with this disease. I also have fibromyalgia (although much milder than you). I was recently diagnosed and think I am still struggling to accept and come to terms with the diagnosis. I feel so guilty how my health impacts our family and some days just do not have the energy to play with the kids like I want to and do fun things with them. The one positive is that it has caused me to prioritize my life and I am not over-committed like so many moms out there.

  24. Hi. I too have had fibromyalgia, It has been 22 years since it started and I had to quit work and stop everything for six months. Since then I have very gradually added activity and have learned a lot about this disease through the years. I could help you. I know I could help you get out of this hole you are in. You can email me anytime!!!

  26. This post has meant so much to me, and reading it brings me close to tears as I understand exactly what you mean. But, today I will be joyful for this IS the day the Lord has made! Thank you!