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If You Could See What I Feel: A Glimpse Inside My Life With Fibromyalgia

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If you could see what I feel, you would see:

That I’m tired of pretending this will go away
I’m tired of pretending day after day
I’m tired of pretending that nothing is wrong
I’m tired of pretending I’m strong

If you could see what I feel…

You would see red, for the searing pain that encompasses my body minute-by-minute, hour-by-hour and day-by-day.

You would see me struggle every morning to get out of bed because I am more tired than I was when I went to bed the night before. That everything I do is an effort because I feel as if I have a perpetual case of the flu only it never… goes… away.

You would see the green of envy I have that I can’t keep up with active toddlers the way a grandmother should.

You would see that one day with a toddler causes weeks of muscle spasms and doctor visits just to get back to where I was before that one day.

You would see my heart break when I snap at someone because I just can’t take anymore, I have nothing left to give and yet someone wants more.

You would see that I see the look on your face when I can’t be what you want me to be at a particular moment.

You would see the frustration on my face just as I see the frustration (or impatience) on yours because in the middle of a sentence I’ve been blasted with fibro fog. I’m robbed of the word I need to complete my sentence and as I stumble in what seems to be a cavernous black hole searching for the word “toaster” to finally have it come out as “tomato.”

You would see the hidden blush of embarrassment since I really do know the difference between a toaster and a tomato; it’s merely another one of those little idiosyncrasies that I have to deal with on a daily basis. I can’t explain it, I don’t understand it, and it just comes as one of the many mysteries that seizes control of my mind and body.

You wouldn’t keep asking me to eat dinner at 7:00 because I’ve told you 20 times if I don’t eat by 5:00 my medicine doesn’t work. It’s not because it’s what I prefer; it’s what I have to do if I have any chance of sleeping. So instead of five hours of sleep, I barely get two only to start the day over again feeling worse than before.

You wouldn’t ask me to sit for hours (cars, theatre, movies, etc.), and when I say it’s difficult for me to sit (again for the 20th time), you wouldn’t say, “If you’d rather not.” It’s not about what I would rather do; it’s never about what I… would… rather… do! It’s about what I can do that will cause the least amount of pain. It’s hard to enjoy a car ride when all I can think of is “please God let this be over soon” before I scream and they see how much I’m in pain.

You wouldn’t say things like, “gee you look good, you must be feeling better today” or “really, you don’t look sick” or “you always seem to have so much energy!” That’s simply because you don’t see me go home and fall on the couch for the remainder of the day or sometimes days to recover from my so-called “energy.”

You wouldn’t ask me what’s wrong every time we have a holiday and we have loads of kids and people and it’s big and loud and the noise level is “at an 11.” You would see that my entire body feels as if it’s about to explode with each scream, or fight or cry… because that’s what I want to do, scream, or fight, or cry and have someone tell me it’ll be OK. Have someone wipe my tears, stroke my head and say, “It’s OK, honey, why don’t you rest for awhile?”

If you could see what I feel you would see the cacophony of emotions, pains, fears and tears that encompass my body 24 hours a day, seven days a week.

You would see that I don’t want you to feel sorry for me or in most cases even treat me differently; you would see that I long for you to understand. That there are times when I don’t have a choice, I’m not choosing to be “lazy,” I’m not choosing to not support you or be with you – you would see that I have nothing left to give.

You would see my sadness because I do understand that a chronic condition doesn’t just affect me, it affects all those around me.

If you could see what I feel you would see that I am tired of pretending…

You would see… that I am simply tired.

Getty Image by natalie_board

Originally published: September 18, 2018
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