September 10-16 is National Invisible Chronic Illness Awareness Week. September is Pain Awareness Month. So, in honor of this, as if I don't tell y'all enough already, I submit these 2 views of my life:
WAKING LIFE
Deplenished REM sleep takes its toll on cognitive function, memory skills are lowered & clumsiness elevated. Medications to combat Chronic Fatigue Syndrome & Fibromyalgia Syndrome often have side effects which worsen these already problematic routine functions, as well as lower response time and cause drowsiness. It is a vicious circle. I trade off these functions, these abilities, or lack there of, in hopes of combating pain. This is my life - I hold on to railing, careful & mindful of each stair step I take so as not to fall. Driving is out of the question unless I forgo the medicines and deal with the pain. The pain makes me more tense & irritable. knowing I'm more irritable upsets me & makes me more tense, this all adds to heightened pain, stiffness, fatigue. I try to get by & be as kind as possible, maybe accomplish something. It all drains me, making me so overwhelmingly tired. Then, the time comes for the project of attempting sleep. This is my life & that of many others with Fibromyalgia Syndrome & Chronic Fatigue Syndrome-welcome.
The Fine Art of Napping
It is my firm belief that it is to the American culture's detriment that we have not embraced the concept of napping. Be it a 15-20 minute power nap or a 30-60 minute siesta, there are many benefits to be had by resting one's body & mind for a bit.
As an "olympic-gold-medal-equivalent-napper" I am often viewed as lazy. The truth of the matter is - I am working very hard! I lay down & have to be in just the right position, I have to move a pillow between my knees to reduce tension on my hip. I have to have a pillow next to me for my arm to drape across & not pull too much. I then have to make myself aware of my body's alignment, being hypermobile it is easy to unknowingly contort into a position which will cause more strain on my body later. The next step is to deploy any & all relaxation steps in my arsenal. I work very hard at being aware of where various tension spots in my body are while lying in as comfortable of a position as possible. If my neck is stiff or hurting I need to know if I've over-extended it for example. Then there is the Restless Leg Syndrome to deal with. Then there is the restless leg syndrome to deal with. I try to taper my movement down from my leg to just my feet, to just my toes, from there I work on letting my mind be free from association of the movement at all. Breathing techniques are now used. Deep cleansing breath in as I imagine myself lilting upward, free of any weights - physical or emotional. I picture "blue sky days" & gently, slowly exhale all the built up pains & Tensions & Worries, allowing them to fall away from me. This process repeats with further cleansing breaths & visualization of "blue sky days" until I no longer have to think about it at all. I'm resting ever so gently on a fluffy white cloud. I am safe here, I am comforted, I am finally relaxed.
As you can see it is quite a process! But it helps rejuvenate me. Considering that during the night when most people get their REM sleep & muscles rebuild, we who suffer Fibromyalgia & Chronic Fatigue & Restless Leg Syndrome wake up in pain - naps are necessary. Despite our best efforts at becoming comfortable we now must reposition ourselves because the pain is too great, it has awoken us from blissful slumber, taunting us to see if we can get back to sleep again. moving all the pillows about, stretching to help stave off the Restless Leg Syndrome, hoping my bad hip will allow me to lay on it - just for a little while. Again with the leg / feet fidgeting, again realigning the body, again sighing with frustration at this all too familiar situation. My mind buzzes, fully awake. Do I get up? If so, what do I do without waking the other 8 people, 2 dogs & 2 parrots in the house? If I get up am I starting a bad habit? I've found the answer is an unequivicable, undeniable yes - my internal clock then auto-wakes me at roughly the same time the next night, expecting to get up -again. So now I must work even harder to be comfortable, to quiet my legs & my mind & to drift back to sleep. I work very hard to be able to sleep, as you've just been given insgiht to. And, if you can now understand how difficult it is to sleep when one has FMS, CFS, RLS, imagine how difficult waking life is!
Be Blessed Dear Readers & be aware that people who "look fine" are not always fine, many suffer invisible illnesses & deal with eye-rolls & glares & even being told "get over it" which would never happen if we had something you could see.
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