Last week was Fibromyalgia Awareness Day. I will admit I was a bit disappointed in the numbers. They were lower than an even regular month and last year during Fibromyalgia Awareness month, I had one of my top months of readership. Honestly, it is not so much for Fibromites. My biggest wish was that NON FIBRO affected people would read this little corner of the internet and pause just a moment to see what our lives are like……. lives destroyed by the R*E*A*L*I*T*Y of Fibromyalgia.
R is for ROAR: Everything roars when you have fibro. From the pounding in your head, to the throbbing of your neck and shoulders, to the piercing cold shooting pains down your arms and legs that can literally knock you down, Fibromyalgia roars like the biggest lion in the jungle. Sadly, it often roars the loudest at 3 AM while the rest of the world soundly sleeps. It is deafening at times, how loud the sound of silence truly roars.
E is for EVERLASTING: The pain is everlasting. If one place calms down a new flare will rear its ugly head in another area of the body. I often joke that my body is a pin ball machine and the ball is a ‘pain ball’ and some unseen force is ‘playing pin ball’ with me. This force is landing the ball in a new place every few days. My video for Fibro awareness alludes to the fact that each day I ‘fight a new dragon’. This reference is also a good comparison. It is frustrating. It is like laundry. When you think you are caught up, someone puts more laundry in the basket.
A is for AWARE: We Fibro Warriors want awareness for our plight. We do not want pity and we do not want to be seen as complainers or drama queens/kings. What we have is very real, very life and soul crushing and can alter the very existence and journey of the Fibromite to the point of complete and utter disability. I feel most of the time as if I simply exist. I have a very low quality of life. I do not live as a normal person lives because each and every thing I do from getting showered and ready for the day to folding a load of clothing takes immense effort. Just grabbing a few items at the store can be overwhelming. Something that is a quick and easy thing done ‘without a second thought’ by a fully functioning person will take us five times as long. Friends forget us and do not invite us, remember us when they come to town or say “Goodbye” when they leave town. Even church family starts keeping its distance. Wait! What would Jesus do? Not what they are doing! Even people who have lost limbs or overcome catastrophic illnesses and recovered have overcome. Fibromyalgia is life long and progressive.
L is for LIVING, something that gets completely altered when this beast progresses in us. A recent trip to a museum, for instance, is a prime example. I had to stop and sit every 5-10 minutes. My fatigue was so huge and horrific, it overshadowed most of the joy I got from visiting the museum. I therefore decided that I would make sure Paul got joy and found comfortable seating and thankfully there was plenty available. I sat about 90% of our visit. I then had to take a power nap to go to dinner with our daughter. Dinner, you know, that meal (that when you go out) you sit down and pay someone to serve you. It was as if I was climbing a mountain with giant 50 lb balls chained to each leg. It reminds me of the quote,
“Sometimes even to live is an act of courage.” ~ Seneca
I is for IBS: Good ole’ IBS, for me the most disabling of Fibro’s co-conditions. It is also by far the most ‘bi-polar’ of the conditions. After my 10th time of going, I finally have to ‘reverse thrusters’ and resort to Immodium. After swallowing about twenty inside an hour, I might feel a let up on the cramping. If not, there are usually more Immodium involved which means in about 5 or so days I am taking stool softeners. It is ugly, it is miserable, it is embarrassing and it keeps you chained to your house. When my Doctor initially disabled me out of work 3 1/2 years ago, my IBS was having me sign off my phone at work up to 10 times per hour for two to three hours. A person cannot work like that! And that is just one of many disabling conditions.
T is for TIRED: And I don’t just mean that run of the mill tired that we all seem to have in this day and age, I mean a fatigue so intense, it has literally shut me down like electricity going out during a power outage. I have literally collapsed from fatigue. As Fibromites know, our sleep cycles are that of nights of insomnia followed by a 14 hour “crash and burn”. Our body has to make up for that lost sleep somewhere. Because I also have severe neck problems (unrelated to fibro), I suffer horrific pain with this, especially when I get spasms.The knots can be felt and even seen! I need at least one surgery. And having surgery will not even alleviate all the pain. I recently went through a horrible muscle spasm flare. This went on for about 2 weeks before I went and had my protocol that breaks these spasms up, if only temporarily. A few days later I spent almost 24 hours straight sleeping. I had lost so much sleep in that previous 2 weeks, I was shattered beyond even my wildest expectations.
Y is for Yearning:
Yearning for the one good day among the many bad days; Yearning for a low pain day after several sleepless nights in a row hoping maybe tonight you might get a few hours of uninterrupted sleep; Yearning for the ability to feel a sense of normalcy after realizing how abnormal your crazy, pain filled, fog filled life really is; Yearning to even remember a normal day as I do not remember what normal feels like; Yearning for your gut to just give you some peace; Yearning for people to pay attention as you are not putting up little purple butterflies and noble sayings just for the fun of it. There is a reason; AWARENESS. Most of all, yearning for a cure. I don’t think I will see it in my lifetime and even if I do, so much damage has been done to my body with 2 decades of Fibro and now a C spine that needs to be rebuilt, it will be too little, too late. However, those sisters and brothers getting a diagnosis today or next year and beyond will reap the rewards of a cure! That is why we must push and never let up for a full on cure. I do not mean ‘patches’ and ‘bandages’ for this cruel and soul crushing existence known as life with Fibromyalgia, let’s push for a full cure!
Until next time, K.