Many people ask me what it’s like living with fibromyalgia. In honor of today, May 12, Fibromyalgia Awareness Day, I thought I would try to put it into words.
I saw a pin on Pinterest the other day which I think sums it up.
(This is how I feel on a bad day!)
On a average day…
I have total body pain-all the time.
Sometimes the pain is in my bones, other times it is in my muscles and sometimes it is in my skin. The intensity of said pain changes and moves from place to place without rhyme or reason.
I first noticed aching & weakness in my arms and hands, then followed by my legs and feet. I also fell two times in the span of a few months. Seems I slightly drag my right foot.
My hands often have no strength.
The palms of my hands burn.
The bottoms of my feet ache when they touch my shoes.
My fingers throb.
My joints are stiff and painful.
When I wake I feel like rigor mortis has set in. Sometimes after sitting for long periods of time, my joints don’t want to move.
I wake up at night because the pressure of the weight of my body touching the bed feels like pins and needles shooting into me.
My skin burns and my eye balls throb & sometimes even my hair hurts.
The rims of my ears feel like they have needles sticking in them, especially at night when I sleep on my side & the weight of my head is on my ear.
Sometimes when I’m talking with you, if I seem distracted, it’s because “the voice of pain” is often much louder than yours.
I am forgetful & often can’t concentrate….They call it Fibro fog- I found it fascinating that it has a name. I think Fibro Fog exists because at times the pain can be so very distracting.
In addition to the pain, I am tired all of the time. I’ve heard it described as a tiredness that sleep can not cure…. I would agree.
I’m exhausted, but often can’t sleep. Many days by 3PM, I struggle to keep my eyes open. I can actually feel my body running out of energy, like a car that is running out of gas.
My “power nap” is 3 hours, not 30 minutes. And often it takes a lot of effort to pull myself back to the “land of the living” after that power nap.
The strange thing about Fibromyalgia is, that it is a silent Illness. When you see me, I am usually doing well. If I am not doing well, I usually don’t leave the house.
No one, except my immediate family knows the time and sleep that it takes for me to recover from a social event. It’s almost time for time.
Many people say, “You don’t look sick”. Look closer….sometimes my face is smiling, but my eyes are not.
Sometimes I look fresh in the afternoon or evening, because I have just gotten out of bed for the second time that day.
I joke and say, I get two days for every one. Because after I have crashed mid-day, I often wake, shower and start my day again in the evening. (It’s amazing what a fresh coat of make-up will do for you.)
Speaking of make-up, it is essential on those “high pain” days. When none of the meds or essential oils can keep the pain at bay and the edge in my voice may convince you that I am mad or irritated with you. I’ve discovered that others, especially those closest to me, have much more grace for me if I have actually taken the effort to “look like something”. If I have showered, put on “my face” and have gotten dressed for the day. (And, No!, yoga pants do not count!)
What’s difficult about having Fibromyalgia…..
Hurtful comments by those who are uneducated.
Not being able to do the things I did before.
Missing life with my husband and children.
Having to choose between what I want to do and what I have to do. Being limited to doing a fraction of the things I once could.
Always having to calculate how much energy it will take to accomplish a task, even when the task is something fun & enjoyable.
Living with 24/7 pain & remembering that life wasn’t always this way.
What I’ve learned living with Fibro….
The pain reminds me that I am alive.
I cherish life much more than I did before.
I have had to streamline my activities…it helps me learn to say “no”.
I rarely overcommit.
I must prioritize.
Some things I want to do, I can’t do.
Most things I don’t want to do, I don’t have to do.
I must be aware of how much energy I have left & therefore must pace myself.
I don’t have the luxury to get really mad….if I do I always have to pay a very high price for that anger. (It is never worth it!)
I must rest!!
I must exercise!
I must eat well!
I must spend time with The Lord. As His word says,
“The joy of The Lord is my strength.”
Honestly, having Fibromyalgia is NO fun. But I have learned to be content in my circumstances. I choose to not focus on the bad, but to praise God for the good.