Just Another Day In Life, With Fibro

I use this hashtag a LOT on my facebook page:  #JustAnotherDayInLifeWithFibro  because it seems no matter what is going on in my life; no matter what symptoms I have, it all can always be chalked up to "just another day in life, with fibro".  It's my feable attempt at being at sarcasm.  If I didn't just shrug and tell myself it's "just another day in life, with fibro" then I'd spend a lot more time crying than throwing my head back and laughing.  

As long as I've been sick; as many stories of others pain with this illness that I've read, you'd think I'd be use to this by now but I'm not.  Tonight, I feel as if a dagger is going through the top of my head.  My forehead and cheek bone feel as if they've been crushed into a thousand pieces.  My knees have a dull, deep ache, I keep getting sharp shooting pains in my shoulders, my middle back feels disconnected from my lower back, and just to the left of my spine in my lower back ...yeah, right where that dimple is just above the butt, is throbbing with a sharp shooting pain.  I am not, nor will I ever be, used to this.

This is one of those nights where I keep mumbling "ouch" outloud, but what I'd really like to do is throw myself down on the ground and have a good 'ole temper tantrum.  Just kick, and scream, and let the tears fly until someone scoops me up, hugs me, and tells me everything is going to be alright.  If only that would work.  

It's a hard night.  I'm in pain.  The pain is making me depressed.  I hate that I'm alone (single) because I think having a significant other in my life would help in times like this.  I DO know though, that I'm not the only one to feel like this.  I know that there's unfortunately others out there feeling the same kind of pain as I am, at this same exact moment in time.  I also know, that it's just something I'm going to have to live with because after all  ....it's "just another day in life, with fibro".  

If any of you ever have a "just another day in life, with fibro" moment please feel free to hashtag it to me.  You can find me on twitter @jaammull or on facebook at: The Fibro Frog.

Isolation

Sometimes, I feel as if I'm stuck inside an isolation tent.  Or, like I'm the boy girl in the bubble.  This illness is relentless and controlling, but more than the illness itself, we have to look at society.  At the "normals".  They just can't wrap their heads around what having Fibromyalgia really means.  Therefore they either unknowingly isolate us or force us to isolate ourselves.  

It truly is a double edged sword.  Most A lot of the time, we really can't force ourselves out of the bed house due to the pain and fatigue that engulfs us to our core, but on the days that we can we sometimes don't because either we don't have anyone to do anything with (since they've all strayed away from us from the times we've had to break plans or decline invites) or because the one's we have left in our lives exclude us because they think we can't handle whatever plans they've made.  A prime example of the latter, is a friend that's going camping in a newer cushy camper with soft beds and A/C.  An invite doesn't come your way then the friend says something about having not invited you because they didn't think you'd be able to tolerate camping.  Well, maybe we couldn't on that day.  But an invite and allowing the Fibromite to decide themselves whether or not they could handle it would be nice.  

You know, I'm down to only a couple IRL friends.  This illness has stolen them all from me.  The few I have left just doesn't "get it".  They have no idea the pain I truly feel on a daily basis.  The fatigue.  I put on the best show I can when I'm around them.  One time this past winter, I was plagued out of the blue (when isn't it out of the blue with Fibro?!) with sudden charley horses in my toes, back, and lower abdomen all at the same time when we were hanging out.  I had to jump up stand up as quickly as I could and I was wincing and sucking in my breath trying to stretch the cramps out.  My friend looked absolutely aghast and said "Are you ok?"  I grimmiced smiled and said "I'm really sorry.  Today is a really bad pain day".  She looked at me and said "I've never seen you like this before".  I replied with "Yeah, because I hate people to feel sorry for me so I do my best to fake a smile and push through the pain so that no ones knows how truly awful this is.  No one understands what this is like".  Within a few minutes,she wanted me to walk down the stairs to the basement and it was like that for the rest of the night.  Even after seeing and hearing, she still didn't "get it".  

Finally, there's the worry and the guilt factor if we do accept an invitation.  What if we can't keep up with the others on whatever outing we may be on?  What if we hold our friends back, or slow them down.  That's always a worry for me.  When it happens, and believe me it has, then the guilt sets in that we ruin everything for everyone around us.  

All of this combined, leaves me sitting at home almost every single day staring at the four walls.  Feeling as if they're going to close in and suffocate me.  Sometimes I feel as if I'm going to breathe in all of the oxygen that's in this house until I'm breathing heavy, hot, unoxygenated air.  Feeling so bored and lonely that the thought of passing away in my sleep is a welcomed idea for a brief stint of thought.  

There are so many ramifications to living with Fibromyalgia that normals would never even begin to think of.  Besides having a bajillion co-conditons, medication side effects, feelings of no self-worth and depression, you also have the isolation.  Sometimes, I wish that everyone with Fibro could be banished to a deserted island., because then at least we'd all have each other in one spot, IRL, to understand and communicate with.  Seeing as that will never happen, we'll have to just visualize that this little blog is the island, and we'll all have to connect here with one another.  How I wish though, that I could see all of your faces.  Hear your voices.  Hang out with each one of you, and give each and every one of you a gentle, butterfly hug.  If you're feeling isolated too, please know that you're not.  We're not.  We all have a little piece of each other.  I love you all!

Sometimes

I try to stay upbeat & positive.  I try to always have hope.  Sometimes though, I just can't.  Sometimes, I think why bother?  Sometimes, I feel overwhelmed and like everything is just too much.  I feel that I don't have any quality to my life any more.  If I can't work.... if I can't go out and do things, and have friends to do them with.... if I have to struggle week to week....if I have to live every day so tired and exhausted that I sit & cry.... if I have to live every single day in pain.... then what's the point of life become?  I'm in too much pain to even keep my house as clean as I'd like it to be, so how could I work?  Without working, I'm poor and can't afford to go out and do things I enjoy.  Being in pain and being poor has isolated me into my house most of the time, so I don't really have many friends left.  

I sit at home alone.  I have conversations with myself, inside my head, because there isn't any one else to talk to.  I try to maintain the facebook page for this blog, but I'm not really sure how many people even read it (or the blog for that matter).  Of the ones who do, how many really give a care what I have to say?  I try to remain hopeful, that by writing this blog and having the facebook page, that I may reach people and help to educate on this illness.  I try to remain hopeful that someday soon there may be a research breakthrough and my miracle cure will be right around the corner.  Is that really hope, or is it living in a fantasy world?

As a younger adult, I've worked 3 part-time jobs while carrying 18 credit hours in college.  All while raising four kids at the same time.  Part of it as a single mom.  I went out and did things with my kids, and with my friends. I always had the money to go do things.  I've never liked being alone.  I don't know if that stems from being an only child or what, but I've always loved to be in the middle of large crowds of people.  I've always been of the mind-set "the more the merrier".  Now, I'm alone.

I did a sink of dishes earlier, and I made supper.  Nothing fancy.  Just a quick, simple, supper.  That was a couple hours ago.  Now, I'm still sitting here in such pain that it takes my breath when a spasm hits.  Hurts constantly, but the spasms are the worst.  Sometimes, I'm not brave enough to keep up the fake smile and the fake "It'll all end up ok" bs.  Because sometimes, I really just need to cry and try to figure out what the point of my life is, when I have to live it within the constraints of pain and poverty caused by pain.  Sometimes, I really just have to wonder what the point of my life really is.  All the time?  I wonder why this illness even exists.

Don't Miss This Event!

Grab Your Family and Friends, and crowd around your computer this weekend!  Not only is my seminar "Living With Chronic Pain - A Patient's View" beneficial for a person suffering from chronic pain, but it's just as beneficial, if not more so, to your friends, family, and healthcare workers that do NOT suffer from a chronic pain condition themselves.  

Like the photo above says, education equals our future.  If we don't educate the people who truly doesn't understand our day to day life, then we won't have any hope in the future!  Hope for understanding. Hope for happiness.  Hope for research.  Hope for a cure.  Hope for solid, universal treatment plans that works for all.  Hope to take our lives back from this monster that steals life as most people know it.  2013 - The Year Of Hope!

The webinar is just $25 per registration, and you can have as many people crowded into around you for the live webinar as you'd like.  I "hope" to see you there!  I "hope" you help me to help you, and to help educate those in your life that just quite can't "get it" without experiencing it for themselves.  Instructions for signing up can be found on the top tab named Chronic Pain Webinar and Seminar.

What Is A Fibromite?

Magic Christmas Dust