Last month was awful. Not because of family, not because of friends, not because of anything that I can control but because of something that is a part of my life, like it or not.
Throughout this last year, I have done my best to eliminate negativity from my life. I find myself “testing” more and more of the self-help advice floating around out there. Some of it works, some of it doesn’t. Either way, I figure it’s worth a shot.
When unavoidable stress manages to ooze into my life, I do my best to handle it. I do my best to avoid a Fibromyalgia flare-up. I try to “Stay Happy & Be Positive”
I wished away most of last month. I just wanted it to be over and now it is.
November has rolled around, and here I find myself once again just wishing for this situation to be over; permanently resolved. This also means I’m wishing my days away…again.
Each day of life should be cherished, not wished away. I know that…I will get back to LIVING. I will not let a couple of bad apples drain my life of joy.
See that picture up there? *The Hug; that’s what I’m going to learn to do. I will embrace each day and LIVE it to the fullest. I will no longer wish my days away!
I realize for those of you meeting me here for the first time, your initial impression might be that I’m a complainer or ungrateful. I am not.
I am thankful every single day for the many blessings I have in my life. In spite of every little task taking so much effort, I am grateful that my health is not worse.
I am lucky. I have my daughters, my husband, my family, my friends, my home, my dog, etc etc etc! I don’t have to face this alone.
That is one of the reasons that I started this blog. So that anyone out there facing this obstacle called Fibromyalgia doesn’t have to do so alone. I hope that by sharing my innermost thoughts and feelings others will have a place to do the same. That, at the very least they will know they are not the only one. A question I have asked myself quite a few times throughout this last year.
Don’t get me wrong, this blog isn’t exactly some selfless act. It is, or at least what I’m hoping will be an important part of my healing process. My first big step toward acceptance, I mean really accepting that I have Fibromyalgia. That in spite of there being no cure, I can heal spiritually and mentally. I can improve physically and I am trying to embrace the new direction my life has taken.
People who know me beyond my words here understand how important control is to me. They know having a weakness (any weakness) is incredibly difficult for me to accept. That I pride myself on always setting the bar beyond what might be considered attainable heights.
This blog Healthizes.com is a place where I will share my journey as I take back control of my life. I’m taking you along for the ride as I learn how to accept certain limitations without lowering my personal expectations.
I hope to make new friends along the way, and I hope others will share their own experiences while learning to LIVE with Fibromyalgia.
As I am reluctantly dragged, kicking, and screaming toward the half-century mark…side note: boy do I wish I had the strength to actually physically resist, kick and scream right now ? … I think of the many ways that I’ve changed.
I prefer to think of it (for the most part) as evolving. That I’ve become wiser as I’ve aged.
In spite of the many things life has taught me and my continued progress toward “wise old owl designation”, two things remain constant.
I’ve lived my life believing that honesty is the best policy and I feel joy when I’m helping someone.
You would think being diagnosed with the F word (Fibromylagia), has been the biggest hurdle I’ve faced this past year but it’s not.
I am working on acceptance. I am working on evolving. I am trying to build a new life. One where we co-exist, my buddy Fibro and me. I am learning to LIVE with Fibromyalgia.
Sorry…that’s another glorious part of my new life…difficulty focusing and am easily distracted…now where was I?
Right, the biggest hurdle that I’ve faced and am still facing is having to deal with dishonesty in the guise of being helpful. It’s like a double whammy for me.
I can’t imagine what it must be like to live a life posing as someone helpful when in reality you’re doing the complete opposite. It must be a lonely life. I wonder what they see when they look in the mirror?
Now, this is one of the ways I’ve become wiser. There was a time I would have wished bad things for someone like that, now I feel sorry for them. Never knowing the joy of truly helping people.
You will not break me. I will never stop believing that honesty is the best policy. In the end, honesty will prevail over lies, ALWAYS.
For so many years I had it wrong. Failure was an option. As long as I gave it my best shot, and so I will.
Apparently my all-time most favorite movie quote “Frankly, my dear, I don’t give a damn” not only made the top 100 list but is #1. Who knew? When Rhett Butler spoke those heartbreaking words to Scarlett O’Hara back in 1939, they would be eternal and affect people for generations to come.
Two things for as long as I can remember have caused my heart to literally ache. The song “It’s Too Late” as sung by Carole King and Rhett Butler finally gives up on Scarlett after loving her so powerfully for so long.
When I first heard the song, I wasn’t thinking in terms of love or relationships. I was too young. I just remember suddenly realizing (I hadn’t thought about it before) that sometimes it can be too late even if you try really really hard to make it.
Ironically, I was with my mother and father who ended up divorcing not very long after. I was oblivious. At the time, I was focused on whatever outing was being canceled because we took too long.
Now Rhett is giving up on Scarlett, well which scarred me for life. Watching Gone with the Wind for the first time, or for the hundredth time I couldn’t give up all hope. I still haven’t. I think Scarlett O’Hara (me too) clung to the hope that she could somehow win back his heart.
But…
When she asks “Where shall I go? What shall I do?” he answers “Frankly, my dear, I don’t give a damn.” It never fails to break my heart.
Why am I telling you this? Ummm… I was sad. When I’m sad I think of these two things. I blogged about it just because, I guess.
“When I was a kid, I used to spend hours playing in a little dirt patch in our backyard. I’d build cities with roads for my toy cars, rivers for boats, you name it. My kids do the same thing today. They just do it digitally, through Minecraft”. Excerpted from Danny’s Post Minecraft & Learning To Love The Digital Sandbox For Your Kids
My response. Great way to look at it! My 13-year-old is absolutely crazy about Minecraft. I admit that I have had my concerns. Now that I’ve read your post, I’m looking at it from a different perspective. She is creative and determined to succeed with each venture, building, or project. She finishes the job and then sets the bar higher for her next challenge. She has learned to plan ahead and face unforeseen obstacles. I like your “sandbox play” comparison and think that you’re banging on.
Recently the four of us were on a family outing. My husband and I attempted to cajole our two teen daughters into a conversation. One daughter was busy chuckling at something someone (who wasn’t in the car) just said, so we tried the other. The next attempt fell short as the 13-year-old popped an earphone out, quite annoyed by the interruption.
I was thinking that teens today build social lives in a virtual world. They’re doing the same as we did, hanging out with a friend or friends. Just not in person. Often I’m cooking supper while talking to three or more kids, only two of which are actually in my kitchen. Took some getting used to but these days I rarely jump when an invisible kid talks to me from what I thought was an empty room.
This is their life, these are their teens. These will be the stories that start with…”When I was a kid”…
I have decided I want to be a part of this time in their lives. So, I listen and I learn. When she shows me her latest Minecraft creation, I am proud of the effort she put into it. I ask questions, each time learning a little bit more.
When my eldest brings someone “virtually” for supper or to watch a movie I talk to them as if they are in the same room.
I’m ok (as long as they are careful) with them hanging out in a Minecraft or social media digital park just like I did in the grass, sand, and dirt park all those years ago.
Mix these conditions together with a few other illnesses thrown in and Taaadaaaa! You’ve got yourself a big old batch of widespread chronic pain. Every minute of every hour of every day of every week is painful.
In case you haven’t noticed, I don’t like using words like Arthritis, Fibromyalgia, and Bursitis (especially the F word). Thus, the nicknames. It’s a way of pacifying the Me that is still in denial and of kyboshing the anxiety these words cause me.
They suck; they’re painful and can knock you flat on your back for days or even weeks at a time. For the sake of “keeping it positive” though, I’m going to call them FAB (which they most definitely are not!)
Who am I kidding? There is nothing positive about having an ever-growing list of painful, incurable autoimmune diseases. That being said, apparently (or so I hear on a daily basis)
staying positive is important (life’s dandy, how could I not?)
exercise is crucial (especially if you want to set off a flare or two or three!)
push yourself but don’t exceed your limits (uh and I know my limits how?)
I swear if one more physically fit person tells me the best medicine for Arthritis and Fibromyalgia is going to the gym I will….well, I’ll probably fake a smile while thanking them for their advice. Like I always do.
Anyway, after my latest visit to the Rheumatologist, I realized it was time to finally accept that I do have Arthritis and Fibromyalgia.
Acceptance was the first hurdle. Now I’m going to focus on…
I found myself always wanting to crawl back into bed and turn it into my own little dark comfy n’ cozy cocoon. My only company in the room was a huge cup of coffee, my dog, and the TV. I’d nap whenever I need to, which is pretty much always. I’d only get up to…Ummm eliminate the last coffee I drank, and of course, make myself a new one.
Friendship was pushed way back into the deepest recess of my mind.
Lucky for me, there’s pretty much always someone wanting something. Be it the guinea pigs whistling for me, the dog woofing at me, the hubby hinting to me or the kids asking outright, someone needs me for something. Even when they’re not here, there’s always something that has to be done. I know it may sound odd, that things like cooking, making lunches, doing the laundry, or cleaning the guinea pig cage help me, but they do. They give me purpose.
Our slightly loud, often chaotic household and the lives within it are what I get up for. Day after day they are what make me push myself to stay upright. Completing even a small task (though it usually feels enormous) gives me a sense of accomplishment.
Going to my mother’s for our weekly supper, not only gets me to dress a little nicer there’s conversation and I get cooked for! Thanks, Mom! Groceries…wipe me out, but they also get me out. School & Hubby’s schedule gets me up early but most importantly they get me up.
It’s been a bad two months; plain and simple! A great deal of energy (which is left very little for other things) has gone into staying upright. Every waking moment has taken an intense effort to stay just that; awake. I was struggling to find the joy of any kind.
Then, a friend helped turn it all around. I’m not sure if she did it intentionally or just that her timing was impeccable, but either way, she really helped me.
During my latest downward spiral, she popped by my place. Which lead to multiple phone calls, a quick visit or two at her work, she visited bringing coffee, goodies, and sewing stuff. We went shopping, nothing huge but it’s all been really enJOYable, every minute of it.
A while back we both developed health issues and circumstances changed. We stayed in touch and managed a few outings to our favorite store, yummy lunches, and uh let’s call it “camping”. What we didn’t do was spend nearly as much time together as we used to. We knew we could count on the other, the friendship was there but our time together had dwindled.
I think “frequency” is the word. As we began to spend more time together I began to feel better. The other day, I didn’t get dressed and I just wanted to crawl back into bed. She somehow pulled off gently nudging me to get up and get ready. Before I realized it she had me going out the front door. I enjoyed my day and we have plans for our next outing!
Things are a little brighter right now. I don’t have to waste my limited energy fighting the urge to crawl back into bed. A little each day I’m regaining my optimism. I’m starting to feel JOY again and my smile is growing more and more genuine.
but I’m trapped in this never-ending nightmare. I can’t work, I can’t sleep, I can barely type at all. This latest Fibro-flare is really packing a punch. The pain at night is unbearable. I can’t shake the brain fog so…
When I explain why I haven’t written sooner… you will understand my Spoonie friend.
You see it in their eyes when they look at you and so I am often dishonest about the way I am feeling. When asked how I am I usually respond with “fine and you?” I rarely let them know that I’m in a disabling amount of pain All The Time.
If I get even the slightest chill it sets off a chain reaction of a deep radiating achy pain, especially at my trigger points.
Speaking of Trigger points, my hands hurt so intensely that if I bang them even slightly, tears well up in my eyes.
I could sing the Fibromyalgia, Arthritis, Interstitial Cystitis, Graves Disease, Previously Hyper but now thanks to radiation Hypoactive Thyroid, Gout, Psoriasis, Chronic Pain, Chronic Fatigue, Depression, Autoimmune Disorders Blues and they would never get it.
You my Spoonie Friend, you know what it’s like. You understand the pain and illnesses we share are not invisible to us. They are physically very very REAL and I understand you.
We get it. We get each other.
This is a letter of thanks…Thank youSpoonies for being in my life. I am grateful for each and every one of you.
I wish you days filled with so many spoons you can’t count. May your spoons runneth over.
For the sake of conversation, let’s say you have developed a chronic illness. Let’s use Fibromyalgia for example.
Life, as you’ve, know it is about to change FOREVER, but there’s at least one silver lining…you are working and have long-term disability insurance.
As time progresses and the Fibromyalgia symptoms get worse you physically can’t work. You have insurance so you can focus on learning how to LIVE with a chronic illnessand how to manage your chronic pain.
It is a very stressful and emotional time, but at least you have insurance so finances, for the time being, are not a worry.
First to do….acceptance. It isn’t easy coming to terms with and accepting that you have a chronic condition. It’s a huge part of learning to LIVE this new life you’ve been handed.
So while you’re struggling physically and emotionally you get a call from this woman. OK so I’m actually talking about me and it’s a true story….
Apparently, she is being sent by the insurance company. I’m lucky enough to have qualified for some extra help like physiotherapy and one on one time with a Kinesiologist.
Long story short – this woman put me through the wringer. She was mean. She threatened me more than once about her 25 years of experience going to court.
She said she doesn’t believe in Fibromylagia. It’s just a label she says for fortysomething women who have burned themselves out doing too much for too long…ummmm? Wasn’t sure what to reply to during that conversation.
I get sent for two days of testing called a Functional Capacity Evaluation. The gentleman seemed nice. Seemed like he really wanted to help and was remaining nonbiased. I’ll save clarifying my use of the word “seemed” for another day.
How ridiculous does this sound? I kid you not……
A phone call from the insurance company, “We got the test results”. She starts reading them to me:
Standing 30 to 45 minutes at a time with opportunity for rest breaks as needed
Minor amounts of level walking up to 6 minutes at a time
Bending/stooping minimize avoid stooping with the exception of very occasional mild repetitive and/or prolonged stooping
Crouching/kneeling restrictions from performing this action
Climbing ability to perform on a rare basis
Strength Pushing, pulling, lifting and/or carrying limited demands only (avoid more than occasional strength activities)
Lifting bilateral 10 lbs on an occasional basis
Lifting unilateral 3 lbs left arm, 5 lbs right arm
With each thing that she reads, my heart sinks more and more. I am not happy about not being able to work. I miss my job, I miss my customers, I miss my team.
My husband is hearing this from the other room. He’s thinking the same thing as me. This news sucks!
Here’s where it becomes laughable (well it would be if it wasn’t such a serious matter). “Good news,” she says. I swear as God is my witness that’s what she said. I’m thinking what? My husband actually says out loud “WHAT?”
How is this good news? Wait for it….and the punchline is….
“You can go back to your occupation as a retail manager”. We’ll pay you for December & January while you look for a job.
I’m having one of those days, where I can’t quite keep up with my thoughts nor can I stay on track. As I’m tackling one task, another pops into my mind which seems like more of a priority. So, then I flip to that one. While on the way to tackle the latest task (not having completed the other) I stumble across a couple more distractions.
I stop in mid-track and change direction. Happens to the best of us, right?
Each of four is thinking about something other than their art: Jane Austen, about her upcoming haircut; Verdi, about chocolate cake; Matisse, of a cat; Mme. Curie, of a beach scene.
Sure we all get distracted and wander off track, to a degree but this inability to focus is way beyond normal. It is so frustrating not being able to get a grip on my thoughts; to keep them focused on just one thing.
It’s like I’ve lost yet more of me to Fibromyalgia.
Some of my greatest professional (and personal) attributes have weakened…
Many days I’m able to reel it in, this ever wandering mind of mine. Some days, like today though the distractions win out. I get frustrated and upset at not being able to stay on track. So many tasks get started and nothing gets completed. The more frustrated I get, the more easily diverted I am.
Until it becomes almost unbearable and then the exhaustion sweeps over me. You’d think that with the fatigue my mind would slow down, but it doesn’t.
Now I’m stuck with a racing mind, so many ideas, so much to do and I have no strength left. Sleep is not really an option because my mind won’t let me.
So here I sit as I continue trying to PUSH through this entry about distractions that I’ve been trying to finish for what feels like forever.
