Alone in a Crowd

Originally Posted; Published on 3/6/2013

Featured Image -- 2541

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

Phase ~ What?

I belong to several online support groups & pages.  It is getting easier for me to tell by the questions people ask what Phase they are in or how long they have been diagnosed with Fibromyalgia.  I like that no matter what phase we are in we can offer help to others.

By now, you are probably saying WTH is this girl talking about?  We haven’t seen anything about Phases.  Well, you are right.  It’s something that I have thought about for quite some time.  I believe that their are 4 phases that we hopefully will go through on our journey through Fibro land.   If we are lucky we will have the support from Family & Friends to reach and stay in Phase 4.

Phase I ~ Tests, Tests & More Tests

Every Fibromite reaches a point when we have to find out why we have been enduring the pain, headaches, depression, and exhaustion.  We undergo blood tests, body scans, and a long list of Doctor appointments.  After each test we hear the same thing from Doctors, Family & Friends that “It’s all in your head” & “There is nothing wrong with you”.

This phase can take years sometimes most of your life to get through Phase I.

After finally finding a Doctor willing to look at the whole picture ~ we are diagnosed.

Phase II ~ Acceptance

Once diagnosed we and the others around us need to accept the fact that the pain and tiredness we have been experiencing is never going away.  We have to accept the possibility of what other symptoms and evil sidekicks may develop.  Most importantly we need to accept that our lifestyle will need to change.  We may not be able to do everything that we want or have been doing.

Phase III ~ Education

We need to first educate ourselves.  The internet gives us access to unlimited information.  Personal blogs and online support groups allow opportunities to see you are not alone, to ask questions, get suggestions and ideas.  We need to do research – to keep looking for what might work in helping manage our symptoms/evil sidekicks.  Next, we need to educate those around us. We need to try and describe how we feel in ways that others will understand and what we need for them to do to help us not just daily but when we are experiencing a flare.

Phase IV ~ Living with Fibromyalgia

We should all strive to reach and stay in Phase 4.  Phase 4 to me means looking at life from a positive approach.  To be accepting of what I can and can’t do, that I will have good & bad days, that there will be some things I won’t be able to do and somethings I will have to do.  Also, I feel it means we choose to be as positive as possible.  We need to not give up, to continue to learn and try new forms of treatment, adjust activities and surroundings so that we can continue to Live life.

I am a Fibro Warrior – Living Life