Archive for April, 2015

Monkey Business

michelle nicole photography

michelle nicole photography


Did you ever have the feeling that someone was following you? That uneasy awareness that there is someone lurking in the shadows, just out of eye sight, watching and waiting for just the right moment to catch you off guard and POUNCE on you.

That’s what it’s like living with an Invisible Illness.

Each day you go about your usual mundane tasks and occasional small errands, like picking up one of the many prescriptions you take each month necessary to maintain some semblance of normalcy; when, without warning or any provocation, you take a step to leave the pharmacy and your ubiquitous stalker grabs hold, incapacitating you with searing pain. This morning you were anxious about your pet’s surgery and in addition, some man scared you silly on the way to the veterinarian. Stress makes you tense, which increases pain levels. Your knees buckle and you grab at the first thing you see to support you. The sudden jolt of pain makes you cry out involuntarily; you are embarrassed and look around to see if anyone noticed. Your legs feel so heavy, you almost expect to see a 300-pound gorilla wrapped around your ankles, but there is just a man standing in front of you. He looks familiar, but not ape-like. He asks if you are ok, you lie and say Yes, I’m fine; it’s easier than trying to explain what just happened to your body. He asks again, you lie again because it takes far less energy; energy that is being depleted every second that you try to stand there. His platitudes seem genuine enough but something feels off.. then you realize… it’s the man from earlier! You don’t want his help, you wonder if he realizes this is a direct result of the stress he has caused as you clutch the outside of the building trying to stay vertical, trying to focus on getting to the car and making the trek back to your house three l. o. n. g. blocks away.

That’s what it’s like living with Chronic Pain.

At home, you head to the recliner and grab a soft blanket to soothe the dysesthesia in your legs and feet; this abnormal sensation to touch spells pending doom for you. The stressful situation earlier in the day triggered a flare. You don’t know how long this flare will last, or what other symptoms you should expect. It’s like spinning a prize wheel at a carnival; “Step right up, step right up!” The midway barker calls, “Spin the wheel, round and round it goes… where it stops, no one knows!” Will you have the all-over, flu-like body aches in addition to the chronic pain resulting from 10 surgeries to stabilize your spine, will fatigue make you need naps that could last 3 hours, will ‘brain fog’ consume your thoughts and words, or perhaps you will hit it big and receive all the lovely symptoms on the wheel.

That’s what it’s like living with Fibromyalgia.

 You are FREEZING; even though you are all snuggled with your soft blanket in the recliner by the fire, you can’t seem to get warm. It’s April, so you have stopped taking the circulation medication per your doctor because it’s supposed to be warm outside. You get up to get socks and a sweater, but when you stand, your feet are all tingly and it hurts to walk on them. Your fingertips have splotches of white on them because circulation to them is being restricted by spasms in your blood vessels. Vasospams are caused by stress, like what you experienced earlier.

That’s what it’s like living with Reynaud’s Phenomenon

Your husband comes home with a bouquet of flowers and a card, gifts to brighten your difficult day. When you hold the bouquet, your hand aches and you need to ask for help cutting the stems. Painful knuckle joints make it impossible to use the scissors. You hope you will be able to cut your food tonight; it’s embarrassing asking for help to use utensils, especially in public. It’s going to rain, you are sure of it; your hands, knees and feet always swell and ache when the atmospheric pressure changes. You hope that you don’t start to feel the effects of the weather in your cervical, thoracic, and lumbar spine or in your pelvis; all which have been fused.

That’s what it’s like living with Osteoarthritis.

                 You are scanning social media, after finishing the wonderful meal your husband made; you are still in the recliner, you even had dinner there, as you often do. You see a post worth sharing…

Judging a person does not define who they are… it defines who you are.



Letting Go


michelle nicole photography

michelle nicole photography


My tidy little plans to regain some semblance of normalcy after returning from vacation went out the window with the unrealistic, get-it-all-done-in-a-day  TA-DO list I had prepared, because, among the souvenirs Tom and I brought home were; GERMS! Nasty ones that took out our travel companions and Tom first, then set their sights on me; choosing to attack my sinus passages, and then throat, holding my vocal cords hostage. Their coup de grace, a Fibromyalgia flare; which once in place, drained every ounce of energy left in me as well as my ability to think beyond the next dose of medication.

I had lost all control!

I needed to make meals and take care of the cats; there was laundry to wash, photos to download and an unfinished manuscript calling to me. My TA-DO list was growing larger than my Christmas wish list, yet no amount of Vick’s Vapor rub or caffeine could motivate me. How could I allow my neatly ordered days to slip by one after another? I had missed birthdays and anniversaries of loved ones…

I had… things to do!

I was quickly trading my normal laissez-faire attitude for a very destructive I WILL get this done come hell or high water, one. While I admit that I tend to over strategize my days, in my defense, it’s because chronic pain and Fibromyalgia makes them unpredictable. On “good” days, I try very hard to accomplish everything on my list, which usually triggers “bad days”, a cycle that seems to repeat, for some reason, in perpetuity.

I need to break this cycle, but I’m not sure how.

As I lay snuggled between soft, warm blankets, steamy air emanating from the vaporizer beside the bed, I tried to think, albeit brief, optimistically. This is the first time I have been sick in about a year, what could I possibly learn from this? I reached through the steam for a tissue, burning my hand. What’s the benefit of snot anyway; I may never understand it’s purpose, especially the copious amounts which my body was producing! Were there any benefits of not being in control? Then as I adjusted the pillows, which propped my body at a 90* angle to ensure breathing and continued life, it came to me…

… the benefit of losing control was losing control!

Did I just hear the Alleluia Chorus? Had God sent a choir of angels to herald in an EPIC revelation? I drug myself out of bed in search of a pen and scrap of paper to make notes, lest the dreaded fibro brain-fog whisk it away. I had always viewed losing control in a negative way, but now, thanks to my heavenly harbingers; I realize that, in a positive respect, by losing control:

I could let go of the fear that things will not get done, or be done, without my input.

I am able to release myself from the responsibility of chronic illness; but not my attitude toward it.

I am free of guilt for not accomplishing everything I had intended and my unrealistic expectations.

I can ask for, and accept help without feeling vulnerable.

I can delegate tasks on my TA-DO list and use the reserve of energy to take care of me!

I opened the bedroom door to find that my heavenly visitation had actually been a trio of felines caterwauling for Cat Chow from the hallway. They escorted me down the stairs and to the pantry so I wouldn’t lose my way. They shouldn’t have worried though, the only thing I lost, was control!