I’m sure that before fibromyalgia became a part of our vocabulary, we never thought that much about it. Maybe some of us hadn’t even heard of it at all. And now that we live it, we have probably heard all the negative, rude, and uneducated comments that people have said when they hear that we have this awful condition.
So many people, including those in the medical community have yet to acknowledge that fibromyalgia is a real condition. But what these people have never experienced is the pain we live with every day. We hear the “it’s all in your head” or “you have that that thing the doctor diagnoses when they don’t know what’s wrong with you” or, probably the best one, “fibromyalgia is a fake disease.”
We see the doubt in people eyes, we feel the judgement when people learn we can no longer work. We live that guilt every day. What these people don’t understand is that living this reality takes every ounce of our being to survive. People who live with chronic pain or chronic illness will never understand what it’s like to walk a day in our shoes.
But to ask the question of what it’s like to live in our shoes for one day is a difficult thing to answer because each person suffers different symptoms, at different levels and functions differently than anyone else..
There is no “normal” for anyone and each person has a different type of day, every day. So to tell you what a typical day is like is impossible and everyone’s journey is different. But as best as I can, I’ll try to tell you about a day in my shoes.
Now I’m not writing this for sympathy or advice, but to give insight and information to those whom may just be beginning this journey. Even though I am no longer able to work, my day still starts early. I have 2 kids who are certainly capable of getting themselves ready in the morning, but I still enjoy that time with them before they head off to school.
As I’m waking up though, I take a minute or two to do a quick check on where I’m at, what hurts, what needs some stretching, or what body part needs a bit of bit more care. I visit with the kids and they are off. I grab a bite to eat because I need something in my stomach for the handful of meds or vitamins I need to take, and depending on how I feel, I may have to add a pain pill or muscle relaxer to the mix, however none of which offer much relief.
Some days I head to the couch or back to bed, depending on how I’m feeling. Other days I grab my phone and check up on social media. As I sit on the couch I do a mental inventory of all the things that need to get done for the day. I toss around in my head, “what NEEDS to get done today, what can wait, and what can I ask my family to help with.
I give my body some more time to ease in to the day and then start a load of laundry, but halfway through folding a load, my muscles scream out and tighten up like a rubber band being stretched to its limits. But, I finish and get another load going. Time for the heating pad. Next I put away the dishes I washed from the previous day and try to get another load of laundry folded.
Time for a muscle relaxer, even though it doesn’t do much, and a hot shower. By now I’m starting to feel like I’ve run a marathon so now might be a good time to lay down for a bit, but not too long because as much of the day has gone by, it’s time to pick up my daughter from school.
Once we get home, it’s time to start thinking about what to make for supper but by now, my fatigue is creeping in so my daughter helps me get the dishes washed and supper ready. After supper, and getting the kitchen back in order, it’s time to relax. But lately this is the time of night that my pain, muscle spasms, stabbing pains, and just plain uncomfortable feelings kick in.
But muscle relaxers or pain pills are doing nothing to make me feel any comfort. So I try to distract myself with family conversations, TV, and ice packs or heating pads. And now as it’s time for bed, I get the couch accessorized with pillows, pillows, and more pillows. I’ve taken to sleeping on the couch more than in my bed because it’s easier to prop myself up when I need to, or turn on the TV when sleep is fleeting. Some nights I’m able drift of into a fitful sleep, and other nights my body refuses to give in to the luxury of sleep, as fractured as it is.
And just like that, it’s time to do it all over again. Keep in mind that this is a “typical” day for me. Some days, when the pain & fatigue aren’t as bad, I push myself to get more done both inside and outside of the house. The following days I pay for it, but deep down it I feel a sense of accomplishment followed by the guilt that I couldn’t do more. Other days, once I lay down, I’m not able to get back up for a day or two and yet again, guilt washes over me because I couldn’t even make my family a meal.
As I said before, every day is different, filled with different challenges or different accomplishments. Some days the pain is so intense I do nothing but sob off and on all day and wonder what value I offer myself or my family. There are days I think waking up is more trouble than it’s worth, other days, I’m happy I am able to function as close to a “normal” day as I can have.
What I’ve learned about this condition is that every day is different, our capabilities are different and our pain and fatigue are what’s really in charge of how our day goes. I can give you all kinds of positive fluff about each day is a gift, learn to find the good in every day, stay positive and make yourself happy. But realistically, we have to take each day as it comes.
Celebrate what we can accomplish, grieve the life we’ve lost, and love those who support and help us day to day. To those who doubt the existence of chronic pain or fibromyalgia, please keep this in mind, be kind to those you meet, they are fighting a battle you know nothing about..