Alone in a Crowd

Originally Posted; Published on 3/6/2013

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Part I

I am in day 3 of a Flare.  It started on Sunday afternoon with my sciatic shooting pain down my right leg followed by my leg deciding to run a mile without me.  I was able to alternate walking and sitting, applied heat and some meds to get through Sunday.

On Monday, when everyone was watching the weather trying to determine whether it was going to hit us or not – I would simply reply – “We are getting some kind of strong weather – trust me”.  My body was already forecasting the weather to come.  The body aches were increasing.  I could feel the myofascial trigger points increasing in both my low back and between my shoulder blades.  I forced myself to go to the pool before work which did help immensely in being able to walk easier.   Note:  I still don’t need a cane or other walking assistance – I just walk like I am 100 years old when I have these days.  I worked a full day with an even fuller night being Mom chauffeur.

On Tuesday a.m. I awoke to the phone ringing telling us there would be no school due to the snow we had received over night.   I would have been calling in sick which I rarely do but the fact that my driveway and roads were not plowed gave me one more reason to stay home.

My body was rebelling the snow outside.  I kept the blinds pulled all day and yet still had a migraine and was wearing dark shades.  I took a long hot bath followed by ice on the back a warm blanket some meds and a NAP.    I woke with hoping to feel better.  There was a short time during the day when pain was lessened.  Then when fixing my family dinner – my body reminded me that it was still there.

It’s Wednesday now,  I woke with the same morning stiffness and aches that I always endure.  But as I continued to get ready for work the pain continued to increase.  Grateful to have only a headache and not a migraine with the rest of my body in high pain, jeans killing me as they touch my thighs.

I dropped our Daughter off at school and then the tears started to come.  I have a 25 minute drive to work which I never stopped crying.  I talked to my husband briefly; when hanging up he said I hope you feel better soon.  He was trying to say something to help but when you have a hysterical pain filled crying woman on the phone what can you say?

Part II – So Alone

As I was driving to work I thought who can I call.  I needed to talk to someone.  I love my Family and Friends but as I thought of each of them I knew they were not what I needed.  What could they do?  I know my Mom would have succeeded in calming me down but all it would have done was to stop the crying.  I needed more than that.  The same thing goes with my friends – I would have most likely calmed myself down until I hung up.

What did I need?  I needed a Fibromite friend.  I needed someone who would 100% know how I was feeling.  We say all the time that unless you have really experienced a Fibro Flare you can’t get it.  How can we make others really understand without going through it.

I think I will print out the following recipe to share with non-fibromites.

recipe cardRecipe for a Fibro Flare

  • Stay up for 3 or 4 days to get the proper feeling of exhaustion
  • Dress in clothing made of rough burlap material
  • Get the flu bug to add fever & body aches
  • Go out and drink way too much – this should give you the migraine, poor balance and queasy stomach
  • Ask someone to take a bat and beat you from head to toe
  • Spend too much time in the sun – giving you the worst sunburn you have ever experienced
  • Use your arms as a pin cushion
  • Add a good dose of memory loss
  • Top it off with someone stabbing you between the shoulder blades once in a while with a good sharp knife
  • Turn on bright spotlights and loud music several times throughout the day
  • Repeat all of the above for at least 3 days

I don’t know if this will help but it’s worth a try.

I continued thinking – how alone this pain makes us feel.

I keep think is that I have family, friends, online support groups and my page where I work so hard to keep a positive outlook for others and yet why do I feel like I am all alone?

How many of us have only have an online support group that we can post our bad days and get some sympathy; and maybe some advice, and really have no-one we can call.

So many times when on some of these sites what happens is we get others who chime in on how bad their day has been too.

Don’t get me wrong I find a big need for these support groups. Heck, I even have my own small one.  I believe in them.  There should be a place where you feel safe to express the pain, anger, etc and hopefully get some positive uplifting support with maybe a few new things to try.

I have a handful of people I have met on these support groups that have become what I would call my Friends.  These are people who I hope in my lifetime to meet and wish we lived in driving distance of each other.  However except for one I have never had any contact with any of these people except for online.

I began to wonder – is there a Hotline for Fibromites?  If not, how hard would it be to start one.  What if I started one? A way for others to have someone to text or call when they are in real need of someone who “has been there” and really can understand where we are coming from when we are in day 3 of a flare.

We use the closed online groups to keep our anonymity; what happens when we open up to others via text, online chat or a real phone conversation?

How can we be surrounded by so many people who care and love us and yet we still feel like we are all alone?sometime we all need a shoulder to cry on

I know that personally when I hit a flare I may start out by voicing it but the longer and stronger they become the more withdrawn I become.

I just want to lock myself up in my room and just be left alone.

This is exactly what I tell people not to do.  I know what I need to do.  I need to make myself go to the pool tomorrow, have my hot baths, keep moving as much as I can.

Tonight; I am going to lie low.  Tomorrow, I will find my inner fight and beat this thing.

I will put this out there to any Fibromites who are reading this – until I figure out the solution to the Fibro hotline – if you are feeling in pain and alone know that I have an ear, a shoulder and sometimes some ideas to share.

We are all Fibro Warriors ~ Living Life

warrior

Are you a man or mouse?

Are you a man or mouse?

We were instructed at my job this week to read the booklet – “Who Moved My Cheese?” by Dr. Spencer Johnson. If you have read the story this blog may make more sense to you.
I promise if you keep reading – it relates to “This is my live ~ Surviving Fibromyalgia”.
The opening states that sometimes we act like the 4 characters in the story.
The four characters show how they each react differently to change.
Change is the one thing that is inevitable. Our daily routine of going through the motions make us forget that life is constantly changing around us.
Our initial reaction to change is to resist it because we are afraid of the unknown. Then when change happens, we stress out and react or hide.
It is trying to teach us the following: “Quoted from Dr. Spencer Johnson”

  • Change Happens. They Keep Moving The Cheese
  • Anticipate Change. Get Ready For The Cheese To Move
  • Monitor Change. Smell the Cheese Often So You Know When It Is Getting Old.
  • Adapt To Change Quickly. The Quicker You Let Go Of Old Cheese, The Sooner You Can Enjoy New Cheese.
  • Change.Move With The Cheese
  • Enjoy Change.Savor The Adventure And Enjoy The Taste Of New Cheese

Keep reading – I’ll get there….
Our Employer’s told us to write how this story relates to us and our job.
I had several thoughts:
My smarty pants reply was ”Are they trying to tell me that there is better cheese out there and I should go look for a better and different job with more cheese?”
My written reply was that I have been faced with many work changes over the past few years and that though I am one that does not like change. I have learned to adapt and continue to look for new things that I can do to help my workplace.
I wanted to say that I have always been the Character that stayed put and watched the changes occur around him. I have stayed as I have watched good and bad policies come and go, watched both good and bad employee’s leave, seen friends move on to look for their new cheese. They were like Haw. They too were scared but excited with the new change. I stay because I don’t like change. Fear has been the driving factor most of my life. I like comfort.
I have moved a total of 2 times in my life. I have worked 2 jobs in the last 20 years. I will be at my current job for 19 years this June. It is safe to say that I don’t like change.
If you have not read “Who moved the Cheese”. I encourage you to go online and read it: http://www.magnacad.com/Printables/WhoMovedMyCheese.pdf
After you read the story – Ok… stick with me – Here it is… this really does relate to Fibro.
I could not tell them (my Employers) that while reading the story – I was internally screaming – “This guy is getting paid to write this “Inspirational” story”. While writing and re-writing this – I tried verbally to get my thoughts across. All that I could manage was tears while I was explaining it. I feel so strong about the last paragraph. So upset and frustrated at the hidden illness and struggle that is endured by so many. Don’t get me wrong – I understand the purpose of the story. The past 2 years of my life – I have had to work my way from being a person that resists all change like Hem to strive to being a mouse.
I like my other Fibro Friends have no choice. If we do not react like the mice (searching for something new – willing to adapt) then we will not only become like the Character Hem (not willing to change) but much more worse. We will end up not leaving our homes, we will be swallowed up in our pain and our depression. Fibro and it’s evil sidekicks love to surprise us all the time with new symptoms and new diagnosis. We have to live the story. We have to anticipate not only what could happen in a reaction to what we have done but what we have not done.
We have to be ready to change to not find our cheese but to SAVE OUR SPOONS.
http://www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpoonTheory.pdf