Okay, when you look at me, what do you see? I am not talking about the pretty brown hair, God created me with, or the eyes that change colors of green or blue. I am not even talking about the artist that I am or the fact that I am a Christian. When you see me, what do you see? Do you see the physical pain I am in? Some people get tired of hearing about it, but they don't live with what I do. They don't live in this painful body that is covering my soul and spirit. They talk to me, and then go on their merry way to work, the store, school, or even church and forget about it, while I am trying to live with what was given to me.
Some pains can be obvious if one is in a cast, has a wheel chair, or is limping on one leg. Most people understand these kinds of people. They move out of their way for them. They let them go first in line. The bus driver makes sure the ramp on the bus is down especially for them. People even have more compassion when they walk in the crosswalk, wait in line at the store, or use a handicapped placard.
When I tell people what I deal with, their immediate reaction is, "Well, you don't look sick." -or- "You look well" -or- "You look pretty" as though pretty people can not have health issues. -or- "but you look so young." Yes, I am a young one, or um, actually I am not even a young adult anymore, but I look young. Just because someone "looks well" doesn't mean they are. It's like just because you see or don't see something, doesn't mean it's what you think it is. Have you heard of, "don't judge the book by it's cover?" What you see, is not always what you get.
Well, for those of you who don't know what I have or deal with including Fibromyalgia, this is just a glimpse of it all. So when you are lying in bed about to have a restful sleep, or about to go to work, or enjoy fun filled time and adventure, please remember to pray for those of us who have the silent illnesses that you just don't see. Remember just because you can't see pain, doesn't mean the horrible pain we deal with, is not there...Okay here is just a glimpse of what "I" deal with:
My eyes have gray spots in my vision causing confusion of what I see or what appears to be blind spots, but when doctors do the tests, they can't find the blind spots. Doctors can't seem to figure out what's wrong with my vision. I also get visual migraines at times. It's the migraines without the pain that affects my eyes.
My feet problems are no joke. I have about 6 things wrong with my feet. It hurts when I walk;
hurts when I wear shoes. It seems so complicated.
My head has a mind of it's own (and hopefully it's mine. ha ha). There's the chronic headaches that lead to migraine-like headaches. They affect my Vision, Thinking Process, and Comprehension. Plus headaches
shoot pain throughout my body. I have had a headache for over 18 years and it doesn't go away.
My jaw is a mess. It hurts to do any jaw movement and I am not even talking about the muscles in the mouth or the muscle spasms in the jaw joint. I have extreme joint pain. There is the Degenerative Joint disease, degenerative arthritis plus the torn disks. My jaw
is no longer in alignment
and is not Asymmetric-- (It's longer on one side of jaw than the
other) because of all the jaw problems I have encountered. The doctor said when I open my mouth, I am basically injuring one side of my jaw, and when I close my mouth, I am injuring the other side. How often do we eat, sing, chew, drink, sip, talk, hum, or open and close our mouth in a day? Too many times for me to voice it out.
I have excellent and heightened hearing which is why I wear ear plugs; yet I can't always decipher what people say to me. High pitch sounds are the worst for me. Everything seems to echo in my ears.
Neck: Have knots in neck accompanied with muscles spasms; All vertebras, except one, are in incorrect position. Have arthritis in back of neck causes burning pain.
Vertigo (dizziness, Unbalance, unsteady feeling with nausea that lasts from 5 minutes up to 3 months.
Then there is the Myofascial pain syndrome, the chronic pain syndrome, and the fibromyalgia. I have painful muscle spasms from head to toe all the time, yet sometimes it gets worse. Just walking causes extreme pain.
Skin hurts; just wearing clothes especially waist bands make it hurt more (and yes I wear clothes all the time. lol). Skin feels like it's burning and/or itching and yet at other times it feels like bugs crawling all over my arms and legs. Believe me, it's a weird sensation. It even hurts to touch, but please don't stop giving me hugs. Just don't give me the kind that are squeezable. If I accidentally bump something lightly, it causes excruciating pain and may even leave a bruise.
If you see me with a sweater, I am not necessarily cold. I have to put something over my skin when the air conditioner or breeze is on me because the pain may increase. Yet please don't assume that I want the air conditioner off because I am temperature sensitive. If it's too hot, I can't handle it either.
There are "tender points" in my body when touched, rubbed, or bumped wrong and can cause me to want to cry out. I tend to be lightheaded so I end up bumping into things easily so I can cause even more pain without meaning to.
There are times I have unusual things happen like every once in a while, I will have sharp pain in my chestwall that hurts when I take a breath. I try not to be vocal but when it happens, I tend to cry out. Other times, certain parts of my body will become numb.
There is the forgetfulness, the short term memory, the fibro fog, the words get twisted when I speak...And if I have a pen and paper out, please do not discourage me of taking notes, because I will forget something important if I don't. Please don't assume that if you can remember it that I will.
My energy is depleted. It is hard to stand up sometimes because the body gets so worn out from fighting the battling war of pain. If I hang out, go to the movies, go to church, or just take a walk, I may have to rest awhile to gain my energy back and calm the muscle spasms.
Sleep: What is it? I haven't slept well on a regular basis in 17 years. There are times I do end up in bed for many hours because I either have excruciating pain where I can't move or I finally am getting some rest after many days or weeks without adequate sleep.
My Hands and fingers hurt even when I write or type. That is why my beautiful handwriting turned sloppy. My hands are often swollen so I tend to drop things all the time. The finger tips even have sharp pain, at times. Nails tend to be brittle. If I grow my nails long, my finger tips hurt even more.
Restless leg syndrome is a new one for me. My legs and arms jerk, move when trying to sleep. plus I have electricity like pain shooting in legs at times. I don't know what causes it though.
My body hurts and is inflamed when weather, barometric pressure, or temperature changes or if there is moisture in the air. That's when fire-burning pain all over body, is common. It also feels like my head swells and can't handle the brain it's carrying. No, I don't have any tumors or cancers or even blood pressure problems. All of those have been ruled out many times. Please don't get mad if I sit, or stand, or lean against the wall, or do all three within minutes because I am just trying to get comfortable. On my good days, I feel like I have the flu without the fever. I may be nauseated, very achy and have lack of energy. Exercising even makes it worse.
I do have food sensitivity. Most foods are bothersome to my body and I can't eat them. Have to read labels before I eat anything. Even when I have changed my way of eating to healthier foods, I still feel sick. Yet I notice I do feel worse when I eat enriched, bleached and sweetened foods. Most supplements, meds, etc...trigger reactions and symptoms in my body. Even allergy injections caused problems for me. Then there are those times that I eat something, and within 15 minutes I look like I am 6 months pregnant. I can say, it is very embarrassing.
Even though I have many other health problems, I am not going to mention all of the other ones. I will leave that to the doctors.
If you actually hear me complain that I am in pain, realize that I am always in pain, and that I always have a headache. If you hear me actually voice the complaint, than it's way worse than the normal pain I deal with. Just to function on a normal basis, I have to take Epsom salt baths, cold/hot packs, and get neck and back adjustments just to be able to function. These are what helps me out some. It doesn't take the pain away; it just takes the edge off.
oh and by the way, I have to totally lean on God. Hey, even Jesus cried out when he was hurting.
So give me a hug, but not a crushing, squeezing one. Give me a high five but don't slap it hard. It's okay to pat my back but don't slam your fist or hand on my back and don't slap me a hello on my shoulder. It hurts too much. Hey we all need that physical touch, but some of us need it a little softer.
Please remember your friends with debilitating chronic pain, they do need your encouragement, understanding, and help. Plus if you believe in the true God, please say a little prayer. Knowing people are praying for me gives me encouragement. God bless..
this post is dedicated to all my fibro buddies...
-picture by Tanya Mae K (Expressive Praise) 2013
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