One of the biggest frustrations anyone with fibromyalgia can attest to is the balancing act it presents to its sufferer. Fibromyalgia brings a multitude of challenges both physical and emotional…. all of which create a day by day and sometimes minute by minute ‘house of horrors’. Whether these roadblocks are put up by the pain of fibro or the judgement this misunderstood condition often brings, people that walk the ‘fibro walk’ can attest to many of the following experiences:
- FIBRO AWARENESS VS. BEING LABELED A “NEGATIVE NELLIE / NED”: I am a crusader for this condition! I post information on my Facebook page nearly daily. Whether it is inspirational quotes, You Tube spots, research articles or a picture, I am ‘so there’. I will not stop until my brain-fog makes my writing look like gibberish. The very words you are reading are a testimony to my passion for fibro awareness. I am not negative, I am a warrior. My name means “Warrior Woman” and my parents chose wisely. Part of it may be that there are still people that label this disorder as ‘unreal’. They are trolls! 99.9% of all Doctors are now in agreement…. fibro is *very* real. The .01% of supposed ‘professionals’ that do not believe it is real should not be allowed to practice medicine.
- IT HITS US “TWICE AS HARD/ TWICE AS LONG/ TWICE AS EASY VS. BEING LABELED PARANOID: I am typing this at 4:05 AM through burning, bloodshot eyes and a tired, aching body that is yearning for sleep. I cannot keep my eyes open, but I cannot shut them to make them go to sleep. I hurt so bad right now, it makes me shudder to itch my arm. The very act of applying light pressure to itch actually is painful. My neck has a one inch range of motion. I also have a very sore mouth as I had pretty wicked oral surgery three days ago for an abscessed tooth that had been agonizing me for the prior two weeks . Just when I thought things were getting better….. or the version of ‘better’ in my world……I picked up a head cold that my husband is just now getting over. So now I have a sore and scratchy throat that is keeping me up, a sore mouth from my tooth extraction and I my pain levels are elevated even higher because I am so exhausted. Fibro makes everything expand. If I get what was a mild head cold to my husband, it is sheer misery for me. If it had been anything other than mild, I know I would end up with a roaring sinus infection and at the Doctor for antibiotics. I am seriously considering getting “Michael Jackson” masks for the next time I hear that dreaded sentence, “Um, honey, you might want to refrain from kissing me…. I think I am coming down with something”…. only to have him go into auto-pilot fifteen minutes later and kiss goodbye for the day despite having stated the fact. The sheer terror. I knew I was screwed. And no, I am not mad. It is what it is…. it is the hell that is my world; the world of a compromised immune system.
- THE ATTEMPT TO HAVE SOME QUALITY OF LIFE VS BEING SHORT ON TIME, HIGH PAIN LEVELS, TIGHT ON MONEY: As I have stated, it is a very rare day, indeed, that I have a good day. I may have a ‘good’ day (meaning pain level 6) two to three times a year. They are essentially non-existent. My days (pain level 7-10) are tolerable, bad or miserable. I have been in miserable mode for nearly three weeks and I am about to claw my eyeballs out! My husband Paul works two jobs. I do not think I have ever met anyone in my life with a better work ethic than Paul. He is devoted beyond words to both of his jobs and we are blessed that he has two good jobs. However, we do not have much time to actually go out . With week nights racing by at light speed, Saturdays usually tied up in errands, chores and getting him out the door by evening, Sunday is our only day. Then, he volunteers on camera at church (though he did ask for a reduction to one Sunday a month because it is starting to catch up to him at times). Add one phone call every three weeks (that was changed from every other week) a month to his Mom on Sunday afternoons… but of course, as it should be!…. and though I am no math expert that leaves us with about 1-2 Sundays a month to try to do something….. anything. I am not complaining. Some couples have ‘date nights’. We cannot because he works weekend nights. On top of that, money is always a bit tight. Now, factor in that I have to ‘feel good enough’. I think we would have better odds at winning the lottery. It is absolutely soul crushing! 🙁 I will say, the one shining bright light is the Sunday every four to six weeks or so that we see and play with our Granddaughter. Now that is a truly happy, happy, happy time for both of us. It seems no matter where my pain falls that day, her very presence lifts it, if even for a few hours.
- KNOWING WHEN TO EASE UP: One of the biggest misconceptions about people with fibromyalgia is that we are ‘lazy’ and that we can just ‘push through’ our pain. One way to lose my respect….. and I literally mean there have been a few…. not a lot…. but a few people I used to respect. I now do not or hold in a different light because of the crass and insensitive comments I have heard / read over the years. It would be like telling someone without legs to ‘get up and walk’ or a blind person to ‘watch where they are going’. The day I left my last job….the day I exhausted every last minute of my FMLA time…..my Doctor ticked the box that said “NO, MY PATIENT CANNOT WORK”. That day changed my life and was the day I officially became disabled. Every specialist I see backed my Doctors decision up, 150%. My pain is not the same as anyone else. What someone might easily be able to ‘push through’….. possibly something I could have ‘pushed through’ even five years ago…..is something that would now make me collapse. The only person whose pain I am qualified to gauge is my own. And a part of that is knowing how to balance my ‘to do’ or ‘to don’t’ list so I am most efficient for my husband and myself.
Life with fibromyalgia is a day to day, minute to minute balancing act. It is a constant ‘checks and balances’ of the patient to make sure they are in optimum physical, emotional and spiritual well being. Anything from an unwanted cold to an unexpected toothache to a ‘well meaning’ friend trying to tell us how to manage our pain can send that set of balls that are carefully being juggled into a spilled frenzy. As the driver of our vessel, broken it may be, we are still the best person to gauge which side of the scale to set the next weight. And by the way, I am finishing this at approximately 5:30 AM. It will be dawn soon and I am sleepless in Salem. I have been awake for almost 22 hours. Yep. Twice as long, twice as bad…..it just sucks. This condition; it never ceases to amaze me. Until next time. K.