Invisibility is NOT a Super Power

And BOOM... over night things change....

The leaves have almost all fallen in the brisk northern winds that blew through over the past few days.  There are a few that are holding on to their splendor.  Those bright reds are always my favorites.

Just like the weather everything changes.  Sunday hit me like a ton of bricks.  Literally.  After nearly 18 years you would think I would finally have a grasp on what is going to make me hurt, sap my energy and literally make me miserable physically, mentally and emotionally.  Or maybe a better statement is you would think I would pay attention to what I know.

I wasn't expecting to wake up Sunday in a full fibro flare. The weather change hadn't been too dramatic, I'd been watching my energy expenditure, making sure to keep processed foods to a minimum, water to a maximum, trying to get enough sleep and frankly I thought I was handling the stress factor pretty amazingly.

Well played life, well played... because evidently the answer is no.

Fibromyalgia is one of those "invisible" illnesses.  I can't tell you how much I absolutely hate that phrase.  Or what it brings to mind.  Yes, I look healthy.  If you look at me you wouldn't realize that I am struggling to process life.  And no I am not looking for sympathy, there is a reason I have this, and I have always tried to learn from it.  I am looking for understanding.  Not for me, but of what it's like to be invisible.

Sunday ended up being a wasted day.  I stopped.  I had to.

All the ironing the day before had fatigued my arms to the point that I was not even able to lift them.  Not without extreme pain and serious concentration.  Oh I can't damage my muscles by making them work, but the struggle of making it happen is mentally and physically exhausting. Just brushing my hair was too much.

My legs have been threatening, walking the boys solo has been taxing the limits.  I knew it.  I've been trying to be careful, that is why I walk them together.  I take it slow, I am cautious.

It ended up not mattering.

Even my hubby, who should know me better than anyone, didn't notice. After climbing the hill repeatedly to help him with a project that he'd decided to tackle (he was medicated) I gave up.  I was cranky and angry.  I was in excruciating pain.  My sensory system over loaded.  And I was mad.

I was mad, because I was "invisible".

99.9% of the time you will not see cracks in my armor. You won't know that the lights blazing all around me are taxing me, are causing my eyes to throb and making me long for dark sunglasses.  You won't know that the constant non-stop noise from all angles is making it almost impossible for me to function.  That it is all overloading me.  Causing every pain sensor in my body to malfunction. I am not going to tell you that the run down a flight of stairs due to an imagined "emergency" (here you can read a case of stupidity) has made me hurt so badly that I am simply longing for my bed.

I've heard folks saying that I wear my clothing too baggy,  it would be more stylish if I wouldn't. Well, that is true, but my skin would never forgive me.  The constant touch of stiff fabrics would be enough to make me stark raving loony.

You won't know that there are times I have to struggle to focus my eyes.  That no matter what that hazy blur is everywhere.

And I haven't even described for you the charming effect of fibro fog.  To have your thoughts get jumbled, to know what you want to say and think and not be able to.  Well, that's a special kind of crazy making there. To know that you need to do something, to have it just out of reach in your brain.  Ugghhh... that is the worst.  People look at you like you are absolutely a moron, without realizing you are doing everything in your power to survive a temporary loss in memory or cognitive ability.  You can read the same sentence over and over and have it make zero sense, when you are the person that wrote that sentence just a day before and completely understood it and what it was directing you to do.  Thank GOD that this only happens to me in extreme flares.  The ones where I haven't paid attention to warning signs.  When I've pushed past my boundaries.

This is probably the most frank I have been in a long time about what it is like to live in my skin.  Hubby saw it when he looked, the medication he is on temporarily wiping out his pain fogged his ability to see.  I hate that he is hurting right now, I am thankful that it is temporary, that they can "fix" it.  Sadly it gives him a window into my life.

I hate that it's invisible.  I hate that people assume it's "pretend" or all in my mind.  Newsflash... it isn't! I've been awake since 3 AM, in unbelievable pain.  I will try to get a nap in, that might allow my brain to go into REM sleep for a bit, that will help.  But other than that... I will simply continue to live my life, because that is how I am.

I do not take medications for it, learned a long time ago that that isn't me, that I can control it better with the things I listed at the top of this.  I know what brought on this flare.   I did.

I did, because I am a people pleaser.  I did, because I am someone that will push myself to insure things don't fail.  I did, because I don't know how to say no.  I did, because I knew that hubby needed extra care right now, but didn't want to disappoint others in my life by slowing down in other areas.  I did, because I have been worried about hubby, my daughter, my grand children, my dear friend and her brother.  I did, because I am me.

I will get a grasp on it, I just need to reevaluate a few things, maybe meet up with a massage therapist, I will get control of it before Hubby has surgery on the 24th.  He will need me strong, I will be strong.

We finally have an answer on his hip.  It isn't one we wanted, and definitely not so soon.  But it is needed. I know there will be stress for both of us.  He is concerned, I am concerned, that leads to stress.  Planning how to deal with his recuperation time, and balancing it out with work demands.  All of it is stressful. All of it can be handled.

This wasn't a plea for sympathy or even empathy.  It was just something I needed to say.  To ask everyone to look beyond smiles, laughter and see the person.  Everyone is hiding something, a perceived weakness or pain.  The good Lord decided I needed humbling, I am sure, so he brought a little tick a long time ago... I try to see deeper, I fail often.  Not every illness or struggle is on the surface.  With sweet hubby you can see it in his eyes, even if the limp and awkward walk doesn't give it away.  You can see the red rims to his eyes screaming out the pain, the new creases from pain etched into his face.  It's easy to recognize.

Are you going to see that I am walking slower?  The dark circles under my eyes?  The fact that my lunch is packed in all easy to manage containers?  That I changed clothes six times this morning to avoid anything that had the remotest possibility of making my skin crawl?  Are you going to see how badly my legs will swell before the night falls?  Will you notice that I am moving back into the shadows a bit more and shutting my doors to avoid noise and chaos? No, because those are invisible.

Who else do you know that is struggling silently?  Invisibly?  I am going to guess that a large majority of the people we all meet each day are struggling.  I ask empathy and compassion.  I ask that we all try to understand and support one another.

I watched a prominent person make a very public announcement about an invisible battle he'd been fighting. I was asked if I thought he was lying.  My answer... no.  I don't know this person, but I understand what he shared and I recognize those invisible battle scars.

Today, I am off with Hubby, celebrating Veteran's Day.  He served as did most of the people in my life and for them I am proud and thankful!  I will use the day to rest.  And take a few baby steps.  Sadly... I need to.

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