Living with an Invisible Illness

Psalm 28:7 New International Version (NIV)
7 The Lord is my strength and my shield;
my heart trusts in him, and he helps me.
My heart leaps for joy,
and with my song I praise him.

 

I am so thankful Jesus is with me daily. His Holy Spirit resides within me. He keeps me focused when the pain is too much. When the bed seems like the best place to spend my days, he reminds me that whilst I can spend an unlimited amount of time with Him lying in my bed, it’s more difficult to share His love for others from that position.

A little over a year ago, I was in a different place, physically. I was feeling pretty good, my fibromyalgia was held at bay with amazing supplements I was using to heal my body from the inside out.  I truly had forgotten, although I can’t imagine how I could ever forget, the all-encompassing pain that runs through your body when you live with Fibromyalgia. I was walking and moving a lot faster than a snail’s crawl which is how I feel now. It was my hope back then when the pain wasn’t as noticeable, fatigue was held at bay and I felt like a normal person, that I would never endure this painful condition again. I wasn’t afraid to go places and try new things for fear of a flare-up and intense pain that might last for days and weeks.

fibro3

I’ve thought long and hard about posting any of this because I truly believed I didn’t have to deal with it anymore. It was a thing of the past. Unfortunately, I know in my mind, as well as my body, that if I am not consistent in using the supplements, eventually my body would go back to what it was and the supplements alone were not enough for the change to take place. I was eating healthier and getting some exercise. As much as I knew this was inevitable, I had hoped and prayed the muscle aches, the pain, the fatigue/insomnia would not come back. Instead of having the sheer exhausted feeling of fatigue, now I am plagued with insomnia. It’s crazy!

But, I push through. I will not quit or give up. That’s not me. I’m not wired that way. Thank you, Lord, that I am not. Thank you Lord Jesus for giving me the strength and determination I need to keep putting one foot in front of the other, no matter how difficult or slow I may be. And watching people much older than me zoom by me in the grocery store or in a parking lot, makes me realize how slow I am moving. However, I AM moving. So very thankful that is the case and I am not in need of a wheelchair.

And because I guess my hand/wrist felt left out of the pain equation, the carpal tunnel is back with a vengeance. I’m back to using a night splint and sometime’s using the night splint during the daytime so I can function again. I never did learn how to use my non-dominant hand to write with. I wonder if that is even possible at my age? OR if I am too set in my ways to take the time to learn?

My internal temperature gauge is stuck in cold mode. I am rarely warm, no matter how many layers of clothing I wear. This totally sucks. I tried to think of a better way to say it that didn’t sound rude or unbecoming, but it sucks. Plain and simple. That’s why I always try to get my hubby to drive everywhere; his vehicle has heated seats.

I guess the hardest part of living with Fibromyalgia is you never know from one day to the next how you are going to feel. Knock wood, the osteoarthritis in my knees and hips are manageable at this time. The degenerative disc disease in my lumbar spine is worse. And the spill I had a few weeks ago, trying not to fall mind you, hasn’t helped.

Because of respiratory problems I live with, I cannot take pain medications to help with my pain. This causes problems with my breathing. Slows it down too much. So I rely on Jesus to carry me through the pain. I spend a lot of time sitting, with my legs propped up as much as possible and I long for the times when I was able to be an active participant in the lives of my family and grandchildren. I have four amazing grandchildren, one lives with us and I am blessed to see him grow and bloom before my eyes. The other three are several years older, involved in extracurricular activities and I haven’t been able to attend any of their outdoor events this year.  It makes me very sad. I love them so much and as much as I know they try to understand, I feel as if I am cheating them somehow and I HATE this part of this disorder/disease.

The other three have known for years that I can’t run and play with them the way their grandfather does. But I have always been able to go before. Now the cool weather is just too much for my body to handle. But I am so very proud of them for everything they do and someday when they are much older, I hope they will know without a doubt that if I could I would have been to every single thing they were involved in.

I push myself many days to get up and get dressed. Put on my “happy” face and “fake” it. I know living with me when I am in pain, is not a walk in the park. I become irritable and grumpy and short with others. I do my best not to let this side of me come out from behind closed doors, but it is so difficult because some days just getting dressed wears me out. The thought of running to the store to grab a few things is exhausting just thinking about it. It’s great if the store you go to has electric carts for customer use, that actually work and will last for the entire time you are in the store, but many are used so much they never have a chance to fully charge and the only thing worse than not having them available is using them to shop and the battery dying in the middle of your  shopping trip and then it’s like being stranded on an island in the middle of nowhere. Now you have a full basket of goods, but no cart in sight to transfer them to.

The single most agonizing part of the widespread pain returning is the muscle spasms that come, out of nowhere. I turned my head earlier to look at something, not quickly, but as I turned my head, a sharp muscle pain and I just had to wait for it to pass. And I get these spasms throughout the day, everywhere. Many you cannot just walk out. Most of the time you just have to wait until your muscles relax. It may be myofascial pain. I’ve been reading about it. This is something I will have to ask my physician the next time I see her.

I have many friends that live with Fibromyalgia and as much as we can be there to support one another, all of us live with it and have varying symptoms to varying degrees. Many of my fibro friends, can’t stand the hot weather or warm temperatures, drains them and all their energy. For me, I am completely the opposite. I love the heat. The hotter the better. Cold weather sucks the life right out of me. There isn’t a coat or blanket warm enough to keep me comfortable. And of course, I live in a state that is known for unpredictable weather.  One day it’s 80, the next it’s 40. It’s no wonder I feel so cold, right?

2 Corinthians 1:3-5   New International Version (NIV)

3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. 5 For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.

I am thankful that I have Fibromyalgia because then I know how to extend comfort to those who deal with it too. I know that God allows us to go through many things in life as a way to be a testimony to others that put their hope in Him. I can still be a light to others by encouraging them, no matter the type of physical pain they experience because our earthly bodies are temporary. This is not our home. We are citizens of Heaven. But I also know that He does not expect us to suffer alone in silence. We are all made for relationship. Relationship with friends and family. All of us have a need to be part of a community, that is loving and supportive. And while all of us can be less than loving and supportive at times in our lives, that is where grace comes in. God gives us grace because He loves us, not because of anything we can do to deserve it. We all fall short in that area. All of us.

Be kind to others. Love them. No one, except for Jesus, knows the internal struggles and battles each and every one of us faces daily. And for each of us, no matter the battles, they can be debilitating if we forget to lean on The One who gives us life. The most important relationship you will ever have in this life is the one you have with Jesus. In my opinion.

Psalm 100:5 New International Version (NIV)
5 For the Lord is good and his love endures forever;
his faithfulness continues through all generations.

May you know how much Jesus Loves You~right now~here in this moment and always! Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith

Blessings friends~Carlene

 

 

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Published by

Carlene W.

I am a very optimistic person. I love Jesus with all my heart. I always try to extend grace whenever I can, help others in need and enjoy spending quality time with family and friends. I am also helping to raise my grandson with Autism and advocating for him as well.

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