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

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