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Knocked Over By A Feather

IT WAS A BIG FUCKING FEATHER…

Category

chronic pain

Get a Job

Every morning about this time
She gets me out of my bed a-crying
Get a job

After breakfast every day
She throws the want ads right my way
And never fails to say
Get a job

Get a Job – The Silhouettes – 1957


This month marks 5 years since I finally gave up trying to work due to my illnesses and applied for disability.

I haven’t had to wake up, slug down a couple of cups of coffee, get my groggy ass dressed, deal with traffic and contend with other people in order to make a living for 60 months.

Another way to look at it, the last time that I was gainfully employed was when I was 38 years old, pretty damn young if you ask me. Some would say in the prime of my life.

I’ll still wake up some mornings with my knickers in a bunch, panicking that I overslept, before the realization comes that I don’t have a job to be late for anymore.

I’m a combo of relieved and angry. Relieved because I don’t have to push myself so hard anymore or deal with pissy coworkers and mean bosses.

Angry because this isn’t how my life was supposed to turn out.

crying-woman
This is bullshit, man. Um…can you pass me a tissue?

I’m not the same person. I mean, technically I am. Shit, I don’t know how to explain it.

Sigh. Okay, here it goes…

Pain changes you. It chews you up and then spits out a completely different version of your prior self. I’m talking about both mental and physical pain, the two often go hand in hand. It touches every aspect of your life, not just being unable to keep a job.

It tries hard to ruin relationships and trust me on this, it does succeed.

I know that things will never go back to the way they were. I think that I’ve come to accept this and now I’m working on cleaning up the debris that these last few years have left behind.

All I really want is to be loved for the person that I am now.

Maybe that’s too much to ask for, but the thought continues to pop into my head, especially when I’m trying to fucking fall asleep.

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Purple Haze

Is this thing on?

Fuck.

I forget just how bad fibro fog can get.

All I do is sleep, watch television shows, read a few blogs (thank you for keeping me entertained) and then sleep some more. Instead of the pain being the focal point, like usual, my cognitive function goes out the window and any deep thoughts get lost in the haze.

Purple haze, all in my brain.

See, all I did was go out last Thursday with my friend Cheryl to a nice dinner, then see the movie IT, which was scary awesome. I screamed a few times and shit.

On Saturday, I had a session with my therapist, then later went out to eat with my family for my aunts birthday. I decided to stay over at my brothers for a fire because it was a chilly evening.

21558004_10155873722562259_113073268790598883_n
Um…that’s my brother.

So, by the time that I woke up on Sunday morning, I could feel that my body and brain were starting to protest because I had the audacity to, you know, LIVE my fucking life.

Let’s count…Sunday, Monday, Tuesday, Wendesday…that’s four, four lost days, bwahahaha!!!

I aggressively attacked back by allowing myself to nap (a lot) and by limiting my exposure to other humans. I am severely stingy when it comes to my mental energy, even when I’m not having a flare, because I have learned that not all conversations are created equal.

Some suck the life-force out of me instead of replenishing it. I know you guys get it.

But, I woke up this morning and finally, it seems that most of the fog has lifted and I am back to being alert (ish.)

I use that often, “ish.” That just means, sorta, kinda.

I better not overdo it today, though. It’s probably insane that I want to write a bunch of posts, wash a load of laundry, grocery shop, do the tango and a shitload of other iffy things that could send me flying backwards to where I started on Sunday.

No, I’m just going to sit here, be thankful that coffee exists and sigh about 1,000 times.

While Packing for Wellness Travel, Guess Who Shows up?

LIFE DOESN’T GET EASIER, YOU JUST GET STRONGER.

Today was supposed to be about wellness traveling and I wanted to let you in on some tips that I use to reduce my chances of having a fibromyalgia flare during family holidays, gatherings and parties.


Fibromyalgia for a day.
A Day with Fibromyalgia.

But things didn’t go as planned as they rarely do with Fibromyalgia Syndrome. I must mention, today of all days, I woke to a pancreas attack. In addition to my fibromyalgia, I have idiopathic chronic pancreatitis. I started having problems with my pancreas in September of 2012. I do not remember much from that time. I was very ill. I was hospitalized 12 times, and 7 of those times I had surgery. On two separate occasions, the surgeon came into my room and asked to what lengths I wanted him to go to preserve my life. I signed a DNR on both occasions. My pancreas was kinked and a calcium stone had formed creating a blockage. I needed stents put into straighten my pancreas and to create a large enough opening for the blockage to be removed. My triglycerides were high and I experienced rapid weight loss, and a little thing called the Sphincter of Oddi were all contributors to my pancreas issues. My gallbladder was removed and found to be contributing to my pancreas issues as well. I was not innocent in all of this, I know I contributed to my pancreas issues just by the lifestyle I was living. I was eating poorly, drinking alcohol, and smoking. It was the perfect storm and I walked directly into it without an umbrella!

So that happened… now let’s get to wellness travel!

Getting ready for those gatherings when you have fibromyalgia take planning and preparation…

  1. About a week before the gathering make a master list of everything you want to take with you. And I do mean E-V-E-R-Y-T-H-I-N-G. You cannot trust your memory.
  2. The day before, pack everything on your list and put by the door you will be leaving from.
  3. The day before travel day pick out what you will wear including jewelry and shoes, socks and underwear. (You can change your mind the day of.)
  4. Shower the night before. I use rollers for my hair. I found my hair looks much better one day after putting rollers in. So, I put them in, use a ton of hairspray like it’s the 80’s and take them out before bed. It only takes a few minutes to touch up my hair the next morning with a curling iron. (Maybe it really looks like crap, but go with it anyway.)
  5. Get your makeup routine down to the bare necessities. Wear it or don’t, whatever you are comfortable with. I use Boom Sticks. (Sold on Cindy Joseph’s website only, three sticks and BOOM you are done!)
  6. “Soft for 30.” This is a rule my husband came up with. We plan to attend events but 30 minutes before we need to leave, we assess if everything is in order, my health is stable, and we are both in the presence of mind to be able to go and enjoy ourselves. If we can not answer yes to all three, we call with our regrets. (This rule doesn’t work with airline tickets… don’t even try.)

There you have it. Pretty easy but very necessary! Planning and being prepared will keep your anxiety in check. You will be able to go and actually enjoy the gathering!


IMG_2890~Kim

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