September 29, 2010 - Pain Level 8

If you read the post for the 28th, you know that I did not pace myself and enjoy sewing without overdoing it.   After going to bed a 5am this morning, I got up around 9:30 when Bill left for work, took my morning handful of pills and went back to bed.   I set the alarm for 11:20.   I'm not sure how many times I hit the snooze and how long I just plain slept through the alarm going off but I finally got out of bed around 12:15.   I felt like I needed more sleep but had to get Bill's lunch made, shower, drop his lunch off at work and get to the church by 2:00 to get the newsletters fold and to the post office before 4.   I got it all done and enjoyed my time folding the newsletters and visiting with the church staff.   Once I dropped the newsletters off at the post office, the adrenalin or whatever it was that was keeping me going started fading.

I decided to stop at Hobby Lobby and see what they had on the clearance row.   I knew that if I went straight home, I would hit the bed and not get up till Thursday morning.   I found a birthday present for my best friend and some card making supplies to make her birthday card and a card for our newest granddaughter that's due the end of October.   Thank goodness for clearance rows.  Without it, we'd never have anything new for us or gifts for others.   Hobbies which help me keep my mind going would be nonresistant.  But when your family income drops over $30,000 in a two year period sometimes you can't pay for food, medicine and utilities much less hobbies.

People ask why I choose to stay home and not work.  CHOOSE?????  Why would I choose to have to decide if I'm paying the light bill or the phone bill this month?  Why would I choose to decide which of my prescriptions I'm going to have filled this month?  Why would I choose to stop working a year after having spent 2 years working to get a degree by taking 18 hours a semester at night and working 40+ hours during the day.  My body forced me to stop.  Had I had the energy, I would have gone down kicking and screaming but there was no fight left.  I wanted to be a paralegal!  I wanted to retire at 60 or 65 not at 52.

Most of us work until we literally can no longer get out of bed to go to work.  For me, my cognitive abilities went before my body caught up with them.  My last year of working, I was learning a new job to go with my brand new college diploma that I received at the "young" age of 51.  Finally a college degree and a professional job where I could work my way up to a good living and a good retirement.  Fibromyalgia and Chronic Fatigue took that dream away.  Beginning 6 months or so before I finally quit working, I could be taught a new task on Monday and by Wednesday, not only could I not remember how to do it, I didn't even remember being taught it.  If I didn't write everything down, and I mean that literally, I couldn't remember what anyone said to me or asked me to do.  The end of February 2009, the pain and fatigue kicked in with a vengeance.  I could barely wake up in the mornings and really thought that I would have to sit down on the bumper of a car in the parking lot to make it into the building the fatigue was so bad.  And then the pain.  Oh the pain.  I would stand over the kitchen sink in the mornings and cry while bending my body all sorts of ways trying to get the pain to ease up so that I could get out of the door.  Finally, I couldn't do it and my doc put me on FMLA for 3 weeks.  I slept the entire 3 weeks.  Almost literally.  I got up to go to the bathroom and ate because Bill made me.  This was a scary time because Bill was without a job and I was petrified of what I knew was coming but refused to accept.  I had to work.  I WANTED to work.  But the writing was on the wall.  I went back to work but it was short lived.  I could not keep up the pace that a paralegal has to work at.  My memory was getting worse and the pain was excruciating.  Finally on May 1, 2009 I could do it no more.  I looked at my boss and said, "I'm going on my approved intermittent FMLA".  Fortunately, Bill went to work for a company with insurance on May 3 but took an almost 60 % pay cut to have a job.

I am headed to bed now, after not even being up 12 hours.  But I'm exhausted and I have to be up by 6:30 in the morning to drive to the MIFA office.  Tomorrow will be one of the most humiliating days of my life.  MIFA is one of those organizations that help people that have had their finances devastated by illness or  job loss.  It helps those who have borrowed from Peter to pay Paul until they can't anymore.  We've gone from being a family who supported the organization to a family that needs their help.  With a $550 light bill and $40 to pay it, I'm going to have to ask for help.  Me, the person who has always supported these organizations who help others.  Me, who never dreamed in a million years that I would need their help.  So as humiliating, humbling and scary as it is, I'll be there with everyone else in my situation, hoping and praying that enough people have been generous with their money so that I can have my light bill paid and we don't have to worry about the lights being cut off Monday.

We are not alone.  Everyone I know who suffers from Fibromyalgia suffers a huge economic hurdle because of their illness.  We're fortunate that even though the premiums and co-pays are high, Bill's work offers insurance benefits. Most of my friends don't and do without desperately needed medical care and medications.  Don't judge a book by it's cover.  You don't know the physical and fiscal pain that person is going through.