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

Fibromyalgia, one more reason to BE PREPARED.

I have always been the one that is “prepared”.  Even long before I was a Mom – I would have the bag with everything in it.  In my past life I worked at a YMCA working with the school age kids.  It was a necessity to have the bag including activities for that “just in case moment”. I find myself training my Daughter to be the same way.  As she goes off to babysit – she has her bag of activities.

Of course, like every Mom I had the diaper bag that you still have when they are toddlers filled with activities, clothing, snacks, etc.  I was born to be the Girl Scout Leader Mom – now it is not just a bag but a Rubbermaid container full of things.  Gotta keep them busy and you never know what you may need.

What does this have to do with having Fibromyalgia?

We all talk about how we have to pack differently when we go on vacations or road trips.

That goes for any activity now.

Our daughter is in a JO Volleyball.  This means that we have one day a weekend that we travel for about 1 1/2 hours to get to where the Tournaments are held.  We have to be there for an hour before their first game – which is usually behind schedule – and we easily spend 6-7 hours watching games. Then… back on the road for the 1 1/2 drive.

The choice of seating is either metal bleachers or chairs with a short counter top as a table.  When we arrive, she takes off to find her team, my husband is usually finding other parents and a spot on the bleachers.  I make my way up the 2 flights of stairs with my bags in check.

The search begins; first for the court they will be on – then to find the nearest outlet and the most supportive comfortable chair that I can find. Then it is set up time.  I have to “be prepared”.  I have chair support, heating pad, extension cords, medication, bio-freeze, water, snacks, back rest, camcorder, etc.

I am prepared ready to handle whatever Fibro and the sidekicks throw my way and yet I feel trapped.

I am not housebound or in a wheel chair.  I feel trapped because I have limitations. The limitations are not just physical and mental.  I have all of the things needed for me to make it through the day the best way I can which also means I am stuck at my chair unless I can get my husband or someone to watch all of my things.

I believe that I can still do what I want to do but with limitations or plenty of planning.

I am not about to give up or stop going to see my Daughter’s activities.  I just have to be more prepared and plan around my “good times” of the day.  I have volunteered to help at the Choir Festival.  I signed up for the time slot that I would have the most energy and the job that would allow me to sit, stand and walk.

It sounds like a lot of work to keep participating in my Daughter’s activities.  There are days when doing so is painful and beyond exhausting.

However, she is one of the reasons that I feel I keep moving, keep exercising, and keep living my life.

There are days that I need to just stay in my comfy chair.  She will be the first one to help me when I have pushed to far.

I know that not everyone is able to do what do or will agree with my ending statement which is…

I will continue to be a role model for my Daughter.  I want her to fight through adversity with faith and strength.  I want her to see that some days you have to take care of yourself first.  I want her to see that you can take the worst situation and find some positive.  Most importantly I want her to know that her Mom is a….

Fibro Warrior – Living Life

warrior