Can I tell you I didn’t want to write this post? It’s not that I don’t want to raise awareness for fibromyaligia, because I do. It’s not that I want to sugarcoat the daily life of those with chronic illness because I don’t.
I want to encourage others – not put the attention on me. But here goes nothin’……
My biggest struggle is all the questions this invisible illness leaves me with.
Would you understand if I told you it’s different every day? Some days it looks more like extreme fatigue, some days it resembles the way a boxer feels after the big fight, and other times my clothes feel like razors scraping across my skin.
How can I explain that I may spend the whole day in the recliner because my energy was non-existent but lay in bed wide awake at 2 a.m.?
Would you be patient while I check the weather forecast before I say yes to your invitation? Because a change in the barometric pressure washes over me with levels of pain that make no sense.
Can I get you to understand that I may make plans one day only to cancel them the next? Irritable bowels, no energy, searing pain, and a host of other symptoms can begin at any time. And do.
Would you understand me when I say one day it might feel like my arm is broken and the next day the pain will be shooting through my body in random explosions like the grand finale at the Fourth of July fireworks?
How do you describe what level of pain your feeling? People think that someone can’t possibly be at a level 7 or 8 without crying when they only think of a scale from 1 to 10. It’s hard to explain that when you’re at a level 6 on your best day you learn to act “normal” and it may be all you can do to get out to your car so you can let the tears flow as that 6 turns into a 9.
Would you understand that I don’t share every symptom with my husband or my kids? After a while, you feel like such a broken record you don’t even want to hear yourself say it again, no matter how loving and understanding your family is.
How do you explain that you can’t remember the ONE item you drove to the store for or the fact that you have to re-read the same sentence in a book 25 times and you still won’t be able to understand the text?
How can I describe that some days a hug will feel like the tight grip of a vise but I still need them badly?
How can I explain that a change in my hormonal cycle can leave me literally writhing in pain all day?
How can I get someone to understand that one day I may feel good enough to go to the movies and the next day I have to have the TV, radio, and all-over noise OFF because the sound physically hurts?
Who’s going to believe me when I say taking ibuprofen won’t help?
When I hear people whisper behind me that they believe this is all in my head would it be rude to scream, “you’re right!” because it is? It’s a neurological problem where my brain confuses and amplifies any discomfort or muscular exertion as severe pain.
Do you think those that look at me as overweight would even care to hear that all three of my medications have weight gain as a side effect? Or the fact that if I walk around the block my body thinks I just ran a marathon?
Would you understand that this doesn’t even cover it?
