Dear Fibromyalgia

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With Great Effort Comes Exhaustion – Fibromyalgia

I’d like to say I’m not letting exhaustion get me down, but that would be a lie.

I am you tired of battling to get something I’m entitled to. It’s exhausting and that’s what they are counting on. Wearing me down to the point where I just give up.

They have me over a barrel. Hiring a lawyer costs money I don’t have. This leaves me with no choice but to fight on my own.

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I have Fibromyalgia. They know it and I know it. I have approved for long-term disability for Fibromyalgia two years the same occupation. One year into the claim and two individuals have decided I can go back to work.

Ummm I still have Fibromyalgia, and as far as I know, there still isn’t a cure. Nothing has changed since my claim was approved, except the Fibromyalgia is getting worse.

I am so overwhelmed by exhaustion just getting out of bed every day takes incredible effort. I’m in a perpetual state of anxiety and am afraid.

When I find myself on the verge of giving up I think about the story of David versus Goliath. Sure it’s just me against a great big insurance company (with lots n’ lots of resources) but I do have truth on my side.

One of the biggest hurdles I’ve had to overcome (and still battle with each day) is an acceptance that I have Fibromyalgia and with it comes limitations.

I was building a new life while learning to LIVE with my fibro buddy. I was focusing on what I could do instead of thinking about what I can’t. I was letting go of the old me; embracing the new.

For months the insurance company has made me day after day after day talk about what I CAN NOT do. It’s torture that befell complete and total mental and physical exhaustion.

I have been lied to and I have been bullied. I’m so very very tired but…

vow to self I won’t give up, I will push through exhaustion until I come out on the other side!

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03/01/2021
A Tough Pill to Swallow – Fibromyalgia

Here’s the thing…when I look around and see people who are much worse off than I am, I feel guilty for struggling at all. In fact, I get angry with myself for even considering their struggles in the first place. Really, my pain pales in comparison to so many others. Who am I to feel sorry for myself? Then I feel shame; I have no right feeling this way.

When did I become so weak? There was a time I believed I could take on the world. Nobody scared me. Nothing scared me. The bigger the challenge, the more I thrived.

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When did that change? A year ago, I was facing this latest challenge head-on. I was learning to LIVE with Fibromyalgia. I was reaching acceptance. I was learning to cope and I was getting stronger.

What happened? People came into my life under the guise of helpfulness. They never intended to help me. I don’t know why, but for whatever reason, they have taken away what little peace of mind I had.

This is a long and difficult process, trying to accept this new weak version of me. I am trying not to feel like a failure, though I have failed.

Acknowledging my condition is difficult. Acceptance is painful. Yet these people make me say “I am weak” and “I can’t” over and over again.

Tell me, please what is the answer? I am dealing with someone who lies. Someone who has clearly stated that she does not believe in Fibromyalgia, let alone that I have it. It’s just a label, she says. A label they give to overachieving women, heading toward fifty, who have burned themselves out by doing too much for too long.

I knew I was in trouble the minute I realized she believes she knows more than everyone, including doctors. I was tempted to ask if she also knew the cure but figured I should keep my mouth shut.

She is a bully and I know that I need to stand up for myself, but I am so tired. I do have one distinct advantage though, and that is truth. I have not lied. I will not lie.

Perhaps it’s time to face a weakness I have had for as long as I can remember; the inability to ask for help when I need it. The time has come in my life when I need to ask for help. I can do this, just not alone, and that for me is a difficult pill to swallow.

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03/01/2021
Stress the Silent Killer – Fibromyalgia

Happy New Year! I hope everyone had a super spectacular stress free holiday season.

So sorry that I disappeared but it’s been a rather extended round of not quite major and not quite minor flares…hmmm maybe I’ll call it a “round” of flares.

No, I’ve got it! The spinning wheel of stress n’ pain; spin it while you sleep, and wake up in the morning to a stressful, painful SURPRISE.

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Not all bad though, was busy with Christmas which I mostly did get to enjoy and I’ve been busy working on a secret project. It’s been fun but the stress has knocked me for a loop (ok so really, it’s been many loops). Hopefully tomorrow the stress ends, and I can start to work on the fun part. I’ll get back to you on that.

Have I told you lately how much I blooming hate the agony that is typing? Anyway, I think maybe I’m whining a wee bit too much. Pretty sure that isn’t what you’re wanting to read ? So, enough of that!

Say no to stress
To sarcasm say yes

I did want to say a little more about stress though. I know you’ve heard this before, but please please please be kind to yourself. STRESS kills. I’ve just watched this silent killer attack two people who are very important to me. It’s dangerous and it destroys lives.

I know, I know…I’m one to talk. For three years (well my entire adult life really) I’ve been trying to learn how to deal with stress, how to let things go, and especially how not to stress myself out.

I’m not there yet, but I am much better at dealing with stress than I used to be. I will no longer allow anyone to have control of what I am feeling. The power over my emotions is mine and mine alone.

This was sooooo not my intention, babbling on about stress but well as usual, once I get going you just never know what direction my rambling will take.

Now that life is about to be back on track, pain, and all I plan on doing better. My goal is to post more regularly on the Facebook page and to have something new on the blog at least once a month.

Ta ta for now and wherever you may be I wish for you to live your life stress–free. Hmmm, ok I’ll make that a wee bit more attainable…

I wish for you to live your life almost stress free ?

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References:

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Official Fibromyalgia Blogs

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Fibromyalgia Stores

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03/01/2021
A Tale of Two Years; My Fibro Tale – Fibromyalgia

We begin this Fibro Tale two years ago this month…

Looking back to the beginning of my fibro tale. I don’t believe pharmacy was necessarily the wrong choice for me at the time.

If there’s one thing I’ve learned in the last two years it’s that no two single Fibro-tales are exactly the same. No two sets of triggers are exactly the same.

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Every single one of us has a different Fibro tale to tell.

I had tumbled a little too far into the abyss and was dangling by a thread above the danger zone. So, I decided on the shortcut, quicker results to bring me back from the brink, both physically and mentally.

For this reason, I filled the first prescription. Which turned out to be the first of many more to come. As one might expect given the circumstances, I needed to get “a little bit well” to tackle life head-on again. So, I decided I would deal with the consequences later.

I don’t regret my choice otherwise, I believe without medicine and the support of my amazing Doctor I might not be here today sharing my Fibro-Tale with you.

After overcoming some uhhhhh shall we call them setbacks? A few months ago I finally decided it was time to start putting some of what I’ve learned about the many faces of my fibromyalgia to use. Now that the urgent stuff had been taken care of, time to try some new things.

I have decided to test the waters at decreasing the number of medications I am taking and to introduce some non-pharmaceutical healing “practices” into my life.

Why? I have finally reached acceptance. Two years into the fibro tale that is now my life, I am at last ready to meet the new me.

Until next time…take care of my #SpoonieFriends. Please feel better soon. Shelley

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03/01/2021
Another Day Another Dollar – Fibromyalgia

Or so my father used to say. For me it’s more like during a flare; another day another dollar less. Keep reminding myself that I must stay away from wallowing. These days it’s sooooo tempting to lie in bed and give me over to the pain. That’d be so much easier than trying to remain upright.

Not going to do it; maybe some other day but not today. Today I will push through the pain and swim to the surface. On the surface, I shall remain!

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First I’m going to pacify myself with a teeny tiny bit of complaining. I have laryngitis right now. That’s not the problem. The inability to speak above a whisper and the aching vocal cords are more of an annoyance than terribly painful. The problem is that more than likely this is just a precursor of more fun things to come… those my friend are problems for another day.

Today I want to give a bit of an update. Last spring I ranted about an absolutely awful experience I’d had when applying for a government program. I won’t get into it except to say that it was so stressful I ended up spiraling deep into a flare. I have a hard time letting it go. Thinking about it is too upsetting. That was another day; a dark day.

It took months but I finally built the courage to look into the program one more time. Glad I did because my most recent meetings went very well, and things have started to move forward. Slowly, but moving forward nonetheless.

I’ve met and will be working with two wonderfully supportive, empathetic, strong women. Things are moving forward and I hope to have really great news soon.

That’s for another day, though ….

Today I celebrate because I finally finished typing this and am about to hit publish ?

Gently hugs spoonie friends.

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03/01/2021
Fibromyalgia – Summer Sure BLASTed By

Didn’t Summer Just Start?

I can not believe it’s been three months since my last Healthizes post. Wow! Where does the time go?

In spite of multiple lengthy and sucky flares, I really have had a blast this summer. I sure hope you all did too.

These last three months for me, have been about enjoying my hubby, my daughters, and my community. It’s been about going to new places, meeting new people, and trying new things. It’s been about self-discovery.

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Did I have you going there for a minute? Of course, I didn’t try roller derby, silly.

The hubby, kids, and I did however get out and enjoy watching our first ever live roller derby event. Thanks for having us Candy Crushers!

Believe me, I was tempted, quite a few times this summer to just give in to the pain. It was bad, a lot of time on crutches. More than once I contemplated backing out of our daily adventures (#StayCay with kids & hubby) but I didn’t.

I’m glad I didn’t. In fact, not once did I regret pushing myself out the door. I am lucky. My family believes me. Even though they can’t see my illness, they accept that it is real.

When I could walk, we walked. When I needed crutches we drove further and walked less. We explored around my fibromyalgia flare–ups, and for that, I am so very very grateful!

What a fantastic idea my husband had that the four of us staycation together this summer. Perfect for a limited financial budget and a limited supply of physical energy too!

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References:

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Fibromyalgia Stores

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03/01/2021
Chronic Pain is a pain in the butt! – Fibromyalgia
I got dem’ Chronic Pain blues

Arggg! Don’t want to jinx it but I think I’m finally putting my latest flare behind me. This was a tough one; I’m talking about widespread chronic pain everywhere. Even had to use crutches to get around.

When I was a kid I had to use crutches for a few years. They were like second nature to me…then again so were the painful palms and chaffed underarm areas from using them. I remember thinking…man I hope I never have to use those again.

Here it is thirty-something years later. Turns out I did and quite likely will have to again. Silver lining? Seems using crutches is like riding a bike, no matter how long it’s been you don’t forget how to use them. Well, I didn’t anyway.

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Enough about my latest go-round with chronic pain, how about a little time out for some happy thoughts? Hmmm ok, here are two…my new flamingo ladies that hubby bought me and Buck the guinea pig helping me out with some typing.

So I guess what I’m getting at (or trying to anyway) is that though chronic pain is an everyday part of life at least the flares come and GO. There is always some kind of relief (or reprieve) on the horizon.

In the meantime, I find that it’s sometimes the silliest things (like my ladies above) that can take your mind off the chronic pain and make you smile for at least a little while.

Hmmm…that makes me wonder, is it possible that my husband and kids realized this before I did?

Lately, I’ve been getting some really nifty, silly n’ fun gifts. My desk and shelves are filling up with some interesting goodies that work wonders at distracting me from my constant companion aka “chronic pain”.

My Husband & Daughters make me smile. I really am lucky, aren’t I? Right mustn’t forget the pets; they make me smile too…
- Dee Ohh Gee the dog RIP baby boy xox
- Piggly Wiggly the Queen of skinny pigs
- Skuttle Bug the bunny rabbit
- Rowena the red eyed guinea pig
- Gopher the sweetest guinea pig EVER
- Gizmo the squeaker guinea pig
- Herbert the hedgehog RIP sweety xox
- Buck the typing guinea pig
- Bippity Boppity Boo Morgeana George Walter (that’s one name) the skinny pig
- Crispy Bacon the skinnny pig – for the record I protested this name! RIP miss you xox
- Pippa our rescue skinny pig was with us a short time but we loved her very much RIP xox
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References:

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Official Fibromyalgia Blogs

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Fibromyalgia Stores

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03/01/2021
Writing Makes Me Happy

Writing is Healing

Just keep writing…just keep writing…just keep…you know Dory’s song? I changed it up a little from swimming to writing. But, ya, hum that to yourself while reading this. In fact, good luck getting the song out of your head anytime time soon. Now that you’ve started humming it ?

By Jove! I think I’ve got it! Scheduling the post, that’s what holds me back every single time! Well, that and sweating the details.

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An idea pops into my head, yes! I get inspired by something new to write. Then by the time I grab my laptop, log in to my website and get ready to start typing, the original thought has faded.

Of course, once I do start typing I then have to worry about search engine optimization. Is what I’m writing going to please human visitors? Will Google find it? Will it come up in the search results? What’s the keyword phrase I should be using anyway? Guess I better stop writing and do a little research first.

Worrying about SEO sure can be a killjoy, when it comes to writing.

I had a thought and I was inspired to write. So I grabbed my notebook and pen and wrote. Quicker than expected I’d filled 5 pages. Haven’t typed them up yet, but looks like maybe one spelling error. Get this, not a single line or word scratched out in this free writing session, ha!

Free Writing Your Cares Away

I’d forgotten how liberating free writing can be. Just let the words flow out onto the paper. Sounds cliché, right? Who cares, it’s the truth. Let them flow, and they will flow.

I’m not saying that SEO isn’t important. Writing to please both the web crawling spiders and the human visitors will need to be taken into account, eventually. However, these technicalities don’t have to get in the way of writing.

They can be done after the fact, but not at the expense of the way your words flow.

Who cares when is a good time to post to your blog or social media. Write the content for use at a future date or time. Free write the words when they are flowing. Not only is it more fun to free write, but I do believe the finished work is also a wee bit more fun to read.

Did I mention I finished the notebook I was writing in? Well, I did. The timing was good, back to school specials just started (in July, go figure) so I got myself three new notebooks and, not one, but two of my favorite pens. Ahem, right, you may not know that about me yet. I absolutely looooooove stationery and pens.

What can I say? Sometimes it’s the little things in life that mean the most. Take care and remember…just keep writing!

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03/01/2021
Diagnosis Emotionally Depleted

Emotionally Smooshed

Ever been so emotionally pummelled that you feel like you just can’t breathe?

No fun, right? That’s where I’m at right now. I know, I know it’s up to me to get myself out of this funk. Rationally, I know that I have the power in me to NOT emotionally react the way that I am. Of course, it’s in there somewhere. Although, it must be real freaking down deep though because I’m having a hard time reaching it.

Believe me, I’m trying. It’s like I’m on that rinse n’ repeat, rinse n’ repeat cycle. A loop if you will. Lie in bed, restless, itty bitty pieces of my heart floating around. My brain pounding, my heart throbbing, my mind rambling on and on and on it goes until almost daylight. Finally, at least some sleep.

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Not great sleep dreams wayyyyyy too emotional for deep sleep, but some sleep.

At this point, I wake up groggy but determined to smile. Exhausted, emotionally and physically. Even so, I drag out the tablet and get to work on a social marketing project.

Determination! I will turn things around and I will feel better today. In a little while, I’ll start smiling again. I will be inspired and I will be inspiring.

Ah, it’s noon! I’m feeling and writing better. My pictures are brighter. Also, my posts are happier. There’s an optimistic feel about them that wasn’t there this morning.

And, Off We go Again…

Suddenly I remember, I made it to this point yesterday too. Much earlier, today took longer. STOP! Don’t do this! Must not start thinking about how everything emotionally unraveled yesterday. Most importantly, don’t bring yourself down. You have to do this! You have to emotionally pump yourself back up.

Think happy thoughts! Go to your happy place! You know, all that cliché crap happy stuff. Well, to be fair it isn’t actually crappy. Logically, I know it’s true but it is just tough getting there sometimes.

Then, sometimes it is beyond hell just trying to grasp onto one tiny glimmer of happiness at all. Not even going to talk about how hard it can be to stay there.

Nevertheless, it’s the freaking emotional roller coaster ride that’s killer. I think I can, I think I can, runs through my head as I’m pulling myself up that steep never-ending hill. I get to the top. Hands-on hips, I beam as I survey the beauty surrounding me.

Wouldn’t you know it! Something beyond my control happens and WHAM! It’s a straight shot to the bottom again.

That is, of course, the little white lie that I tell myself. It’s beyond my control, is a technicality that I’m using to try and fool myself. There is something that can be done to avoid the emotional wreckage. I know what I should do, I know what I probably have to do. In any case, it’s just not fair!

Then again, whoever said life has to be fair, especially emotionally?

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References:

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Fibromyalgia Stores

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03/01/2021
That’s Optimism Baby!

Who’s to say what optimism really means…

Hmmm what can I say about optimism? Let’s see, first off for some it may be easier to muster up than others. Take me for example, you try looking at the bright side when everything hurts ALL the time. Not an easy thing to do.

That being said, I try. Goodness knows I try to be optimistic. Sometimes, the best I can come up with is that this too shall pass. At least that’s something, right? I mean, it’s a glimmer of hope. A reminder that whatever big pile of steaming poop you’re dealing with right now will become a memory, eventually.

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Now I realize that may not sound very optimistic to the average person. Believe me though, when your entire body, mind, and soul are engulfed in an agonizing flare, knowing that it will pass at some point is pretty much all you have.

With chronic pain, when there is no relief to be had, you hold on to the hope that it will pass sooner rather than later. That my friend is what I call optimism.

Optimism, It Can Mean Different Things to Different People

According to dictionary.com the noun optimism can mean, a disposition or tendency to look on the more favorable side of events or conditions and to expect the most favorable outcome.

Taking that definition into account, if each time that you are suffering you hang in there because you know the latest flare will eventually end, does that not mean you are optimistic? Optimism is hope and having hope is optimism. Believing that there will be a relief and that the flare will end.

Now, I’m not saying the pain ends completely. That’s the tricky part. When the flare ends the pain doesn’t just go away, it lessens. Sometimes a little bit and sometimes a lot. You just never know until the time comes, which it’s going to be. When you’re really lucky the chronic widespread pain will drop from a 9/10 to a 4/10.

I know, we more than likely don’t sound very positive to the healthy. In fact, it’s probably tough to wrap your mind around just how much optimism it takes for us to get through most days.

When you hear the words “today is going to be a pain rating 3 kinds of day”, what we’re really saying is “today is going to be a great day!”

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References:

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03/01/2021