A little poem for contemplation…
The Butterfly and The Weed
A white butterfly lands on a dandelion in my yard. I ask, “What are you trying to tell me little white butterfly?” Her reply, “I can get sustenance from flowers — even if you call them weeds.” And she flies off.
the ZOO Path 2: Product of the Day (POD)
…. See. I warned you that the ZOO was a space for the wild. The Monkey Mind may play out in the most unanticipated of ways….
An unlikely Product of the Day (POD) is the Beauty Blender.
One thing I’ve realized during this mother load of the flare up is how much easier the beauty blender makes my daily life. Because of the strange neurological sensations in my hands, what I touch now feels like sandpaper. My hair feels gritty and my skin rough, even craggy. Who would want to feel that? A dry sandy craggy surface that’s supposed to be your skin every time you “pretty yourself up” as you are reading yourself up to face the day?
I had been using the Beauty Blender for quite awhile since it became available, but felt it was just kind of a so-so product. It did provide good coverage, with easy blendability, leaving a nice velvety surface. But, the downside is sometimes the product would slide off the blender before I got it on my face especially if I used tinted moisturizer or liquid foundation. The recent FLUP has confirmed my thoughts about it…. I love it now!
If you don’t know what the Beauty Blender is — it is a strangely-shaped sponge (sometimes oval, sometimes a squashed minaret) that can be use to apply moisturizer, primer, BB cream, foundation, concealer. You wet the sponge until it grows about 2-3x larger than its original size and squeeze out the excess water so there are no drips. Then apply product (about a dime’s size at time) to blender and bounce the blender on your skin repeatedly, or lay on the product with rolling strokes until completely blended. Repeat process if you require more coverage. Use the tip of blender for under the eye and nose crease. It is quick and easy to use. It doesn’t leave streaks or tiny stray hairs on your face — a major pain if you have fibro skin sensitivities. I like it even better than a stippling brush which even the best ones can feel scratchy and leave those tiny brush hairs scattered on your face. Tiny brush hairs are big PITAs (pains in the ascot) in general, and can irritate you to the point of craziness if you have neuralgia. You can use a very gentle touch (i.e., repeated gentle bouncing) and still get expert results. The light bouncing doesn’t even hurt my TMJ tender spots or bother my sinuses.
As a bonus, using it even feels luxurious, like you are old Hollywood glam readying yourself for your next big scene. And, you are in the start of the scene as you get yourself acclimated for the start of your day, or the main event that you will soon be attending. Glam and go!
Its easy to clean with gentle soap (baby shampoo) and water. During FLUPs I let it soak in the sink then squeeze it in the warm water rolling it back and forth. Repeat and rinse until clear. With regular cleaning they last a long time, mine’s nearly over a year now. You can buy the original Beauty Blender which is quite expensive with cleanser (about $34) or you can buy repos which work just as well and come in many different colors. I bought an extra pink blender at Walgreens for $5 to use with concealer.
Do you use the beauty blender? Have you noticed the same non-PITAs for us fibro fire starting girls? Please share in the comments below.
You have chosen Path 1: The Digression
You have chosen Path 1: The Digression
By now you might be thinking, “Won’t she just get on with it already? I am dying of anticipation.” well, here it goes….
I AM A MULTIFACETED PERSON WHO HAPPENS TO HAVE A CHRONIC AILMENT.
And so are You: Say this to yourself loudly and repeat every day. Because your condition, ailment, dis-ease is NOT you. It is not something you own. It’s a part of your experience as you continue on your own fibro fire-starting journey.
Here’s mine…
I am a multi-faceted person with multiple interests who just happens to experience fibro symptoms, like you. My story is not much different than yours. My journey is probably like yours. With perhaps some different fits and starts….
Among other things… I’m a make-up junkie. Its part of my creative nature and is something I cannot shake no matter the severity of my symptoms at times. In my early 20’s I was battling with two sides of my personality: the structured analytical side vs. the creative dreamy side. In short, the Logical vs. the Artistic.
I had done some modelling and secretly desired to be a make-up artist and photographer who also loved to dance and perform. This baffled me because I wasn’t “the artistic one” in my family. I had been labelled by my mother in her “Prime of Miss Jean Brodie” fashion as “the intellectual daughter” who had a strong will and loved school; who as a toddler would carry around her coloring books and tell people she had homework to do when asked what she was carrying around in her arms; who knew from a young age that she would be going to university; and was teased by her siblings as “Encyclopedia Brown” because she read all the time and who couldn’t help pontificating on what she read aloud to those around her …. this label seemed to be a natural fit and it developed into an early belief of my own self that I was not creative but rather merely practical, reliable, dependable. But as we know, in Miss Brodie’s Edinburgh, the dependable Sandy begins to rebel at her labeling and forced position as confidante. She desires to be more like the Brodite that is permitted to be wild and free. And I roamed wild and free in few places away from family including the outdoors and while reading books. I yearned for anything that allowed me to be in the flow, as I soon discovered.
Indeed, my fascination with mythology, mysticism, and symbolism developed at a very young age first with the icons of the Catholic faith and then when I read my older college-attending brother’s book on Greek Mythology and History, the nebulous worlds of the unknown. Those stories –because to me history is a vivid collection of stories from a different place, time, and culture– intrigued me and the pictures were fascinating. The demons always started out as innocent or plain human beings who because of their choices were struck down by the Gods in some horrific manner. There was duality in them. Perhaps this is what affected my reading of the Bible as interpretable and not set-in-stone at an early age. Who knows? But something deep inside me questioned everything. I saw duality in everything, and yet was to recognize and embrace it in myself.
The irony of my strictly-imposed maternal categorization which I swallowed as truth is …. my father was an artist, who happened to be a salesman. He also happened to be a natural wanderer and when challenged longed to be outdoors or immersed in his oils. One of the last paintings he immersed himself in prior to his demise in his mid 40’s proudly hangs in our master bedroom providing a daily source of warmth and inspiration. He always gave me “artistic” gifts and crafts for presents to encourage the softness in those logical edges that I believe he saw in me.
I still remember the wood burning kit I had received when I was about 7/8. I loved smelling the burning wood as I traced the patterns on the little wooden tile boards completely absorbed by the odor, burning the pattern in front of me (heart, bird, house, tree, dog, cat), hearing the long sizzle–ssssszsssss, and seeing the steam rise. It was hypnotic, empowering, and other-worldly on those bitter winter afternoons. One day in my haste I accidentally slipped my finger onto the stylus and unaware continued the slow burning pattern. I ended up with a purple burn blister on my writing finger which I tried to cool by running out of the house and thrusting my hand into the snow. I knew that my mom would freak out if she saw the horrendous blob so I hid my right hand for a few weeks in my pocket or my lap until it healed. Man, did it hurt! I didn’t realize it then but I had been completely in the flow and had got burned. I had suffered for my art. How thrilling!
The kit eventually got sold at an estate sale without my knowledge during my parents’ divorce. Once reconciled with that fact, I went onto my other artistic craft of writing. See, I didn’t really realize that these were artistic/creative endeavors, they were just things I did. I was always writing down stories and making up stories to entertain my younger sister before bedtime. I made up mysteries inspired by Nancy Drew and the Hardy Boys. I read every light blue covered book owned by my brothers that I could get my hands on after I had finished reading my older sister’s tomes. Who didn’t envision themselves as those adventurous kids who solved mysteries and helped people with problems? My heroine always went by the name of Nancy Blake. She also was my favored name choice when engaging in role playing. I still don’t have any idea why I chose it.
My oldest brother gave me “Alfred Hitchcock and the Three Investigators” one time as a random present. I didn’t know who Alfred Hitchcock was but I knew that the boys strove to impress him with their problem-solving skills and that they had to think outside the box to get there. Mysteries applied with cold decisive logic was something I gravitated towards. In retrospect, a natural progression was occurring that I was unaware of and would be further clouded by our constant moving.
It goes without saying how much I loved Scooby Doo reruns; one of my fave cartoons although sometimes a little toooo spoooky and I’d have to run outside into the Saturday sunlight so the monsters wouldn’t get me. ahhh, kid logic, huh? When I’d walk in the woods around our property I’d sometimes get freaked by the misty air and would have to do the same. I’d streak through the trees to find the ray of sunshine on the edge of the woods risking grave injury and possibly even death. I’d emerge into the warm spot where the almost transparent insects swirled in a great cloud in the massive sun’s shower of power. Then I’d return with a sunbeam filled stick to wave away the forest demons. I didn’t want them to get the forest animals, birds, and shady insects and moths. I’d rush to the center-most maple tree in the forest and start my crusade. I needed a home base, to begin from, so that the sunbeam-filled stick reconnected the wise sage to its essential light source. Even the clouds if they were the right color could block its homing connection if they wanted to. And, I, the Protector of the Arbol, had to ensure that the tree’s dwindling light strength was connected to its source at all times. When the Arbol was connected to the source, in a way I felt so too. Another theme was slowly emerging from my youthful adventures, being connected to the source and how that provided for me the utmost in sustenance.
In junior high, I wanted to be two things for my career ambitions: a lawyer and a writer.
I was always under the impression that a lawyer was merely analytical. I adored Perry Mason. So logically incisive, determined, cold in his calculation and he nabbed people in their lies with his skill and logical power. My grandma and I would watch reruns together on her colored TV. I followed his every move after school and was impressed by the wood-paneled office with the early African art decor, and the sharpness of his suits. He had his own private investigator and sharp secretary who was a strong skilled woman, always applying her pen with an adept hand. You knew whatever direction Perry gave would be done to the letter by Della. They wore swanky clothes, Paul Drake wore bark cloth blazers; they had slick cars and dined in refined restaurants. They were witty and a powerful team. What a sophisticated high brow lifestyle!
I began to learn and understand that practicing law, as I had seen on Perry Mason and other lawyer shows, was also called the art of practicing law as I went on to read legal books that my brother had given me as more educational gifts. Law as an art — how cool is that? The perfect blend of analytical and creative personalities.
You would surmise at this point, and you would be correct, that I had planned on attending law school to fulfill my dream. Indeed, I was accepted and on my way to move to Boston when ….. BAM …… the hurried onset of fibro symptoms which had been slowly emerging in a most perplexing manner, weaving a strange pattern of pain, fatigue, memory fuzziness, stiffness, and weakness into the tapestry of my life … put a stop to my career plans.
At first, I lied by omission to people about the reason I didn’t move to Boston and told them it was entirely due to a financial concern. But the truth was more money could be borrowed and my oldest brother who always had supported my academic endeavors both emotionally and financially would have sacrificed much more to ensure my career success.
How could I tell him what I didn’t even understand myself — my body and my mind were failing me? I was ashamed and felt that I was failing all those who believed in me — family, friends, and mentors. Doctors didn’t know the reason for the strange array of symptoms, indeed, they kept telling me that it was all in my head, that I just couldn’t handle the stress. gasp! I desired to be a lawyer and I couldn’t handle stress? How could I handle the most stressful year in law school, known as the 1-L?
But what the experts did not know, and I was yet to learn, is that GOD had other plans for me. I had no Plan B, but the Divine did.
The Divine was providing me a new path to integrate the magical with the logical. Experience had to be had first, to learn the metaphysical, to personally experiment with ideas unbeknownst to me. The only thought that kept me going at that time was “things happen for a reason.” That was all I had as I felt I was losing everything. Perhaps there was a greater reason for it.
….
You have now come to the end of Path 1 of the ZOO. The Digression road was windy, but perhaps informative. Thank you for taking this road.
Click here to go on to Path 2: the Product of the Day.
the Zoo: Come Play With Us
So I’m starting with the last letter of the ABCs. I wondered if I was a newcomer to this blog and was beginning my fibro fire-starting journey …. which letter would intrigue me the most? I’d be dying to know why she included ZOO. What could that subject possibly mean?
Will she discuss a parade of animals? Will she discuss the evils of locking up animals who yearn to roam free in the wild? Will she suggest that having many different fibro symptoms is like walking into a zoo? That a FLUP is like walking up to the monkey cages where sometimes you get poo slung at you? And they laugh at your mortified response?
Perhaps. When I think of the zoo, I immediately think of monkeys, the place where they get to run around and play all day long, while being cared for and attended to, the lucky little furry imps!
This category of post is the area where we get to play and run with abandon. Where thoughts will ramble and roam. More like the wild but contained with some well-reasoned thought. A little self indulgence but with a point. Any subject will be discussed in our zoo. I might share a book, recipe, movie, music, youtube clip, person of interest, or some tool or product that makes my life living with fibro a little easier.
It will be a place to explore. digress. free associate. with nary a rule. Except one: You must have an open mind when entering the ZOO.
This Our place to have FUN. Maybe this is the only source you have because you are housebound. You may be disabled or in an area where you have limited resources. You may not know of other online sites. Perhaps your avenues of fun were wiped out with your diagnosis, like mine of physical activity and hands-on DIY projects (I used to make jewelry), and you have to find new sources of FUN. Or, you want to talk with other fibro friends, need a place to get away from what one of my fibro friends calls the “whiny wailers.” We may kvetch at times but the ultimate goal is to provide an area for inspiration and FUN. And who doesn’t have fun when at the ZOO? If you have suggestions for increasing FUN at the ZOO, please share with us in the comments section.
Now’s where we come to the fork-in-the-road. Like a true Choose Your Own Adventure story, you get to decide where you go next ….
Path 1 continues you along the way of the DIGRESSION.
Path 2 takes you to the ZOO subject of the day.
Which way YOU go is up to you….. Enjoy!
Note: Three monkeys image courtesy of p://www.neilbrowne.com/2012/09/media-omerta/three_monkeys_by_suridhondlavagu/
“The key question isn’t ‘What fosters creativity?’ but it is why in God’s name isn’t everyone creative? Where was the human potential lost? How was it crippled? I think therefore a good question might be not why do people create, but why do people not create and innovate? We have got to abandon that sense of amazement in the face of creativity, as if it were a miracle if anybody creates anything.” (Abraham Maslow)
Let me get to the point…. God has given me a straight up slap-to-the-head recently in the form of the dreaded FLARE-UP.
I’ve been reminded that my ego, perfectionist tendencies, self-judgment, and unwillingness to admit weakness and ask for help, BLUNT my creativity and healing. {insert brick wall here … repeatedly smash your head into it …. now you have experienced the real road block}
I’ve had the mother of flare-ups these last few weeks, not just the fibro feeling down in the dumps combined with fatigue, inflammation, immobility, pain, tenderness, IBS, RLS, GERD, etc. You know the drill, you’ve been there. …. I’ve seemingly had every last injury and condition flare up into the Perfect Storm of pain, paralysis, and forced introspection.
This FLUP, as I’m now calling them, results in ….
Forced reexamination of what my true beliefs are about transcending limitations and using empowering techniques to carry me through. For if I’m not living what I’m saying, then its all just words blowing in the air. Right? And then what use does this serve our community of Fibro FireStarters?
The main issue I’m dealing with currently is nerve-related. I have lost feeling in most of my body except for my head and a small part of my torso on my right side beneath my ribs. Now its finally transformed into just numbness in my arms and hands (which makes me look like I have penguin flippers as I stand, move, or do any normal usage of my upper appendages) and the bottoms of my feet, a little remains in the legs. I can feel the healing slowly traveling throughout my body as the severity of my symptoms alleviate and the feeling of release lovingly emanates. Numbness is much slighter and I have movement. I can move my arms, neck, hands, legs, and walk almost in a straight line. I’ve nearly restored my balance and gait. At best, I’m moving more like a monkey. Penguin, monkey, what animal will I resemble next on my progression to human form again? Hopefully, a cat — involuntary stretches, flexibility, relaxation and a quick whip of my sassy tail.
It started with tightness in my upper and mid back, causing the dropsies, increasing slowly-difficult movement, and what felt more like pinched nerves underneath both of my scapulae and in my neck. It seemed to be a migration of injuries I experienced years ago…. Seemingly, reemerging from a direct hit to the ulnar nerve on my left side which resulted in severe nerve response loss 6 years ago. If I remember correctly at the time, it ended up being something like less than 50% use of my left arm for a stretch of time; when specialists were contemplating how to fix the cubital tunnel syndrome that resulted from the direct hit. (yep, another syndrome to add to the list). Luckily the need for surgery was in the iffy category at that time because of my age being under 40.
Then a couple years back I faced complete numbness in my legs from hips to toes that after expert consultation revealed the possibility of sacro iliac joint imbalance. Lengthy physical therapy restored the symmetry in my hips and pelvis and the numbness, pain, and the tingle tremors were replaced by balance, hip strength and mobility. But the imbalance has come back since something has thrown me off-kilter.
Even the previously torn tendons from my sprained ankle flared. Cervicalgia from hitting my head (WHACK!) on the computer arm attached beneath my desk reared up to take notice reminding me that the weight of my small head was much greater than I realized. Tightness, numbness, and jaw popping that always makes me want to chew more gum flares. And the gum chewing for TMJ sets in motion a combination of lantern jaw and swivel jaw that I swear makes me all the sudden have a combination southern drawl and hillbilly twang melange. That TMJ which I felt had been conquered reminded me that a locked jaw and bruxism were like ladies-in-waiting hiding in the shadows flirting with their fans until the groomsmen bowed to them at the dance with outstretched hands, boding them to take a twirl in the ball room. My flare-up dance card was being filled quickly. Who else was going to show up, I wondered? Fibro fog was fickle as he showed up early and then would tap the others on the shoulder butting in usually when I was home at night trying to remember what chores had to be done. Anxiety in his usual boisterous manner made my thoughts race a mile a minute as I finished up projects at work, and from what I couldn’t remember during the day popped up in my dreams during the night. — Don’t forget to send out that email. I should have included that {fill in the blank} in that document. How could I forget that? Am I supposed to have an engagement with an Italian since I keep dreaming about the botched pizza party where colorfully decorated zesty Margherita, pepperoni and sausage mega cheezy pies keep being knocked to the floor? When will those people outside shut up already? Why is my cat puking again? Why is it all electronics emit a high frequency buzzing, & is this a conspiracy against women who hear in higher ranges? Man, I’ve got a lot of crap to get rid of! Which stuff needs to go? Why are my eyes so dang dry and my skin on fire? and on, and on, and on…. the thoughts race against time to show up in the spotlight of the never-ending theater that is my brain …..
When you are so immobile that you can barely hold a book, even though your body twitches uncontrollably, and you still can’t control your basic movement and manage your sense of space it forces you INto introspection … because now even the cable isn’t working right … does my cable TV have fibro? I wonder, I want to watch my TCM and escape into classic movies where style and elegance dominate … nope you must contemplate that which you’ve been ignoring and your communication system has had to numb you down so you’ll refocus on the essentials that you have been consciously missing & you must do it NOW ….
since I look for the symbolism in every life situation as an insight to what’s going on behind the scenes, the symbolic messages flare-up with enormous intensity immediately …
What are you doing to communicate? Where are you not communicating? Why haven’t you been creating, and what areas of your life has this been most affected by? What are you shirking away from? What emotional and psychological circumstances did you not finish dealing with 6 years ago that surrounded that injury and hardship? What areas of your life leave you feeling cold, what are the hot areas of your life that you have been pulling back from? Why aren’t you moving toward those areas that empower you? Why are you not relying on those who strengthen you — your circle of empowerment, wellness, and light? What are you judging yourself about? What areas and spheres of influence do you need to let go of? Why are you not nurturing yourself? What are you so impatient about? How have you used x, y, z excuse to stultify your soul’s calling? What is stultifying you? Why do you feel at a loss to find options to move beyond those stultifying things?
These are just some of the questions I’ve been faced with as I allow healing to occur and follow my Living in the B-Range journey.
Now the main answer to my questions to move beyond the FLUP, which is usually just waiting out the flare-up process to the state of relative normalcy has been this:
Follow the ABCs ….. ACT. ADD. ART (axis of releasing tension). BE. CREATE. DIVINE. EXPAND. FLEXIBILITY & FLOW. GLOW. HUMOR. INDEPENDENCE. JUDGE NOT. KICK. LIGHTNESS. MOVE. NEW. OPEN. POSTURE. QUIT. REFINE. SHARE. TALLY HO. UNLOAD. VISUALIZE. WRITE. X-AMINE & X-OUT. Y-AM I DOING THIS? ZOO.
I will expand on these ABCs later and how they have been most useful to me and I hope can be helpful for you. Which one intrigues you the most?
update: Have to share this video on lessons about CREATIVITY…. it is a process, a way of operating, not just talent….
I promise that I will be posting about this next week. & you, my fellow Fibro Firestarters, then get to decide what post follows next……
Fun awaits, stay tuned.
Today, I celebrate my ability to walk.
Over the past 20 years, there have been times that I’ve been unable to do so and have struggled with walking across the room. I had to use wheelchairs and fought hard not to enter the vicious cycle of being on disability. I have experienced the need for succumbing to a complete change in my life after I was used to running 25-40 miles/week, bicycling as my main source of transportation, and generally used to getting up and go whenever I desired.
Today, I celebrate my body becoming stronger, my stride getting longer, and steady breath while doing what I desire most of all — free movement.
Tittle Tattle – re page name
We are on our way to bigger and better changes. Name should be …… FibroFire™
Please join us Fibro -Firestarters!
INTENTIONS not RESOLUTIONS
HAPPY NEW YEAR!
It is resolution time, isn’t it? For most, this is that dreaded time when we are forced to evaluate the previous year and try to account for why we didn’t fulfill those heartfelt commitments we had resolved to follow from the year before.
Yep, I’ve been there and done that!
Trying to redo the same failed resolutions every year that fell under certain umbrellas — Get organized. Write blog. Figure out how WordPress works. Get x, y, z project done at work. Do my many projects at home. Socialize more. Make friends/family more of a priority. More self-care. Learn such & such skill. — I really tried to be successful at them by following all those helpful setting-successful-resolution-attainment-tips that I could get my hands on. I broke my resolutions down into smaller specific attainable goals, made a time-line, set dates, drafted plans (do this by this date with checklists), did a vision board, etc. Nothing seemed to work for me. I was not satisfied with the results. I felt like a failure.
A few years back, I began ridding myself of the dreaded making-resolutions-process and instead moving onto something more powerful — setting a New Year’s Intention. What did I intend to accomplish for the year? And most importantly, what was the theme I desired to follow and embody? The first year that I did this I began with a seemingly simple thing ~ follow my intuition more.
Here’s the intention that I had set for 2012: To disassociate myself from people and things that drain my energy.
And did this intention set in motion immediate change. I found that more people and projects dropped in and out of my life very quickly. I was able to say NO to projects with minimal regret. Projects were taken away from me. I changed my hairstyle. I finally got the courage to deal with the bill collectors that had been harassing me via telephone and emails while looking for my sister. My baths took on new meaning as I actually could pinpoint the excess energy that was zapping me; new strong visualizations exploded into my vision enabling me to drain and repel those energies. I began feeling more like the energy emanating from me was my own. I felt lighter, developed sharper thinking and a more specific focus; chronic ailments abated. Even my partner and I seemed to argue less or when we did argue, it was more intense but we were able to ride those arguments out faster. Humor popped up in situations where it was most needed, seemingly from nowhere. Also, it seemed during the progression of the year that more of the people I had been encountering were lighter, happier, and imparted their learning lesson to me most expeditiously. Instead of focusing on the anxieties I had which woke me in the middle of the night and bemoaning my lack of sleep, I meditated and decided to use this time as my personal think tank—I was now filling the reserve with much-needed contemplation. Then ideas came to me so suddenly that I began carrying around my journal so I could record them. This was something that I had always promised myself that I would do “in the future.” I realized just how much I love to write, as I would craft powerful expositions from my stream of consciousness so that the draft only existed in my head. Now I actually just did it: I put the journal in my bag! No more struggle about whether I should carry it. No more lost thoughts. No more unwritten drafts. And friends and family didn’t even mind that I’d whip out my pink pen to hurriedly jot something down during our conversations. In fact they became more curious about it and encouragement flowed.
All in all, as much as I loathed many aspects of 2012, my annual review shows that, in fact, I did live my intention. Those crappy painful situations were actually manifestations of IT. The velocity and frequency of them were enabling me to reach my GOAL in universal, synchronistic hyper-drive. I think it was Hay House author, Denise Linn, whom first suggested the use of New Year’s intentions instead of resolutions on one of her radio shows. I am so grateful that I followed her advice to try a completely new approach. These past few years I have been able to review the old year and feel that progress was truly made.
What a remarkable year 2012 truly was!
~My next post will be my intention for 2013 ….
aka LIVING LIFE IN THE B-RANGE
I’ve had fibromyalgia syndrome (FMS) for over 20 years. And yet, I’m surviving. I battle the pain, fatigue, and emotional/hormonal ups and downs every day … and have been battling … for over 20 bloody years! Those of us who have this disease ailment condition mostly feel that we are walking zombies on the path of semi-predictable bouts of our new “pain of the day” or whatever fibro condition and the various tag-along conditions occur along the way. I call this the “No Man’s Land” of that which is chronic syndromes. However, a more apt term is MAJOR PAIN-IN-THE-BUTT SYNDROME.
And YOU know what those conditions and off-shoot syndromes are — brain fog, IBS, Dry Eye Syndrome, Sjorgren’s Syndrome, thyroid imbalances, Restless Leg Syndrome (RLS) [or jimmy legs that feel like bugs are climbing on ’em and won’t let you fully rest or hit you just as you are about to finally drop into that dreamy state], TMJ, Chronic or Multiple Allergy Syndrome, PCOS, Anxiety/Depression, migraine headaches, systemic yeast infection (Candida Albicans imbalance), Celiac’s Disease, …… YOU feel like a walking poster board of syndromes with a list of acronyms running across your face and body.
But people walking past you — the poster board of syndromes — don’t SEE them. Because they are invisible to the naked eye. And YOU feel ashamed, bewildered, frustrated and alone.
At least that’s my world (sometimes).
I am blessed with many friends and family, who show sympathy to me and ask “How are you feeling? Can you explain to me again your condition?” and remark “How hard it must be for you!” all the time. Most of the time I just want them to shut the hell up about it. I don’t need to be reminded that I have a condition at every frickin family function or social event I attend. I know that I can barely walk up and down the stairs or stand for long periods of time. I don’t need reminders. But they do feel free to look at me with sympathy because they do mean well. Although it seems more to me because I am less than. Rather, it used to serve as a constant reminder of how much lesser than them I was. Some of my cohorts have shared their empathy with me saying they can understand because the symptoms (pain, fatigue, unpredictability) sound so close to those they experienced during pregnancy; that they too felt like they had fibro. However, I tell them, I don’t get to feel the good hormones running through my body, only the bad ones. Or even have that natural glow. Damn!
Family- , Friend-, and Co-worker-sympathy is not the same as having fellow fibro fighters to share the pain, frustration, and laughter with.
Because even how I finally realized that I had a problem that was more than something I was aware of has a funny bent to it. & I don’t get much laughs from the fibro sympathizers when I tell it. So let me share it with you. & then I’m hoping you will share your fibro realization stories with me.
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I was a runner and would run about 25 miles a week. First, I felt a growing pain in my right leg that wouldn’t go away. Weird Charley horses were in my hamstring and calves that persisted after I ran and stretched. Sometimes they would go away, sometimes it took an epsom salt bath to rid them. But I knew this was more than just pulled muscles. I had done that when I was kid in gymnastics, and I never forgot THAT feeling, especially when I had to crawl along the floor because my thighs wouldn’t function for about a week. But I digress. Then the creepy crawly bug feeling started and would intensify on that leg when I sat at my work desk for long periods of time. Since I worked in an old building, I thought that there was some ant colony living within the walls that eluded my search when I felt the dang critter run back down my leg and looked down to try to swat it. But nothing was there. Strange enough! I consoled myself with remarks that I just wasn’t getting enough sleep. Even began staying in, taking naps on the weekend.
But one day it happened. I had finished coming back from a run in early September. Since my sports bra was dripping with sweat and it was a cool day in the upper 50’s I tried to rip it off as quickly as I could as I entered the bedroom. My arms froze, the white band around my head. I lost my balance and down I went. But did that fall help me finish wiggling out of the soggy band? Heck no. The more I pulled, the weaker my arms became, and the more they hurt until the band rolled up and grew tighter. The sports bra band would give no more. Both my arms stay locked in this cross-over pose and I couldn’t budge my hands past up my elbows. I was by myself and had male neighbors, so realizing I couldn’t get their help, I reasoned that I had to find something, like a pole to aid with freeing me from my soggy rubber band shackle. So I bumped my way about until I got to the kitchen. I really don’t remember the exact details of freeing myself. But it consisted of draping the hole positioned slightly above my forehead over the spire of a wooden chair, pushing my bad leg against it while giving it a quick yank. Ouch! The chair went flying and made a loud thud against the door. My arms had red welts on them but I was free. Then afterward they hurt for days. I felt silly and stupid … but most of all, I felt terrified after this freak accident. Why did my arms give out like that, when I had ripped off my sports bras so easily before after finishing a run? And why wouldn’t my legs and lower back stop aching?
That’s when I began the hunt for a doctor in 1995 to explain to me what the hell was going on. All I knew is something wasn’t right — I hurt all over and felt a state of exhaustion like I had never felt before in my life; even worse than having the flu. First, my practitioner determined that I had Chronic Fatigue Syndrome. I was tested for Epstein Barr Virus and Lyme Disease (which both came back negative). Then I was told that there wasn’t much that could be done about it. It was a new “disease” that the doctors really didn’t know that much about although it was a new problem that doctors were seeing increasingly. My doctor gave me literature (which was a copy of a brief article from a woman’s magazine) and my desperate search for answers began. Later I heard about a chiropractor who worked with “Wholistic Health” treatments. Willing to try anything to get rid of this feeling, I agreed to an accelerated course of herbal, nutritional and strange therapies. My condition only worsened.
Now, besides the general fatigue and achiness I felt, I noticed that old ladies (senior citizens no less) were passing me on the sidewalk! Even walking became incredibly laborious and I was becoming less aware of my countenance, which was stiff and stooping. However, I was increasingly aware of the shooting pain that ran down my legs and reverberated up to my lower back with each step I took. It was by sheer will that I even forced myself to walk. Other strange physical things were occurring too. I could barely move my head and couldn’t sleep the night through. When I tried to go to sleep at my usual bedtime, I would jolt up wide awake and couldn’t get back to sleep. I would literally drop from exhaustion when doing light household chores. When taking showers, I would feel faint. My legs throbbed with pain constantly even when I was sitting. While I watched TV, I would just rub my legs crying and begging God to tell me what was happening to me. Holding a book to read was nearly impossible. My thoughts were scattered and I couldn’t sit still. Subsequently, I dropped my workload to part-time and ceased all my volunteer activities. Needless to say, my social life took a nose dive, wherein I melted into near obscurity. Friends were freaked out by my new “persona” — I was beginning to talk about getting a wheelchair. Since I didn’t have their energy level anymore people ceased wanting to do things with me.
It took until three years later to get some real answers for my strange condition and the level of PAIN I had. I didn’t just fit the parameters of a person with CFS. It was by sheer luck that I heard about another yuppie disease, the illness du jour called Fibromyalgia Syndrome (FMS). Ultimately I received this diagnosis from a rheumatologist. “Finally,” I thought in the doctor’s office, “someone who gets it, this strange overall achiness I have and this p-a-i-n … he even explained the plethora of weird symptoms.” But, any elation I felt at the clinic quickly crashed in on me … I was told that I had registered all the sensitive tender points, and that I would probably never be able to work full-time, or engage in intense aerobic activity again. To a runner and semi-Type A personality like myself, it felt like a death knell.
Once my diagnosis was made, my battle had just begun …
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