August 2000

Aug. 12, 2000

Hooray!  

Today I installed a trial version of Microsoft FrontPage.  Now I can start writing my journal.  And when I finish my Web Site I can share it with the FMily.

I feel caught in a box.  I spend my time going to work (full-time), resting in the evenings, recovering on the weekends, and going back to work the next week.  Fortunately, I have a good and challenging job (more on that later).  But it doesn't satisfy all my needs.  It doesn't satisfy my needs for play and recreation or for close intimate friends and relationships.

In addition, I injure easily and heal slowly.  Right now I'm healing a sprained ankle, tendonitis in my left knee, and both wrists and elbows hurt.

I talked with my doctor, an excellent rehabilitation doctor at Virginia Mason in Seattle, and she said a program of slowly progressing aerobic exercise and stretches could make a big difference both in healing the injuries and increasing my energy.  But right now I don't have the energy to do this.  (I can exercise without aggravating the general fibromyalgia symptoms.  Also, the doctor and physical therapist at Virginia Mason are experts at exercise programs for fibromyalgia.)

That is why I feel like I'm in a box.

This morning I lay in bed thinking.  It's Sunday morning and I'm still tired.  After I play with FrontPage, I'm going to go back to bed and nap.  Then I should feel better.  It worked yesterday.

Back to the box.  One good thing about my job is that I have flex time.  I'm thinking about asking for 1.5-2 hour lunches everyday and staying later to complete might 8 hours of work.  When I have lunch with my friend I will then workout for an hour, making a 2 hour lunch hour.  When I don't have lunch with my friend, I will work out for 1.5 hours.  This will give me the time to work up from 15 to 30 minutes on the exercise bike and time to take a shower, which I will certainly need as I increase my time on the exercise bike.

I will focus on my legs and stretching my arms.  There are some exercises I could only do at home.  And I can tell you, when I get home I don't want to do anything more than heat up my dinner and read or watch TV.  I want at least 2 hours of time to myself each evening.  But with this plan, I'll only need to do 1 exercise at home which takes about 10 minutes.  It's a really important stretch for my knees and I think I can work 1 exercise into my evening.

Signing off for today.  Marie

Aug. 21, 2000

It is Monday morning and time for work again.  I felt lousy all weekend -- tired, anxious, angry, and sad.  On Saturday, I wanted to sort through all of the papers on my 2 desks.  But my arms aren't up to it.  I got through 1 magazine size holder box (out of 6), and my elbows started to hurt.  I took a break and then decided to do more general straightening up.  I did a lot of stuff on the computer because I talk to the computer and it doesn't use my arms very much.  Sunday I continued to feel both anxious and low energy.  It is a strange combination.  I was mad I couldn't do what I wanted to do (straighten up the papers) so I would not do anything else.  Even some things that I knew would be good, some things to take care myself.

And I was lonely this weekend too.  I need to make more friends but it's hard to do when energy level is low.

Well, I better finish getting ready to go to work.

Marie

After Work

I had a lousy day.  I have a horrible headache.  There is pain and pressure on my cheeks, on my forehead, at the back of my neck, and on my shoulders.  I just want to put my head into a bucket of water and make all muscles relax and all of the pain go away.  I don't have much energy.  It was hard to focus at work.  And I may have a little sore throat.  I hurt inside.  It's hard to get motivated to do things.

Is this depression?  Another sinus infection?  That would be really lousy, I just finished antibiotics last week.  A cold?  Fibromyalgia?

I am angry.  Angry about the limitations of this disability and how hard I have to work just to keep going to maintain the normal life.  And angry about how difficult it is to maintain a social life. My social contacts at work are great, but I need more than friends I see a work. I need a group of friends outside of work that I can do fun things with and share my stories with and feel loved.

As often as feeling lousy happens, I hate it every time.  I need to go to work to support myself.  But it's not much fun when I feel this way.  And it has impacts on my relationship with others.  I started arguing with my boss's boss today.  Fortunately, I saw what I was doing and shut up.  I didn't listen to a friend the way I would like to after she lost her Grandma. And I worried about each of these events.  Fortunately, I could talk with my friend and I found out that I had not offended her as I had feared.

At least I made it home in time to do 3 loads of wash that I just did not feel like doing this weekend.  I'm almost out of socks and underwear and am completely out of clean blouses to wear to work.  

August 31, 2000

This morning on Good Morning America they interviewed a young girl, perhaps nine years old, who had received a stem cell transplant for a severe case of rheumatoid arthritis.  It cured her of rheumatoid arthritis :-). The interviewer asked her what it was like before rheumatoid arthritis was cured. They asked her what it was like to lay on the couch while her brothers and sisters were outside playing and having fun.  She said it was sad.  Her face looked sad.  The adults acknowledged her feelings, implicitly agreeing that that is no way to live.  (I have never seen such acknowledgement on the media.  I certainly don't see it or feel it around people who have chronic illness.)  I almost started to cry.  That's how I feel with fibromyalgia -- I'm sidelined so much of the time and miss out on a lot of fun.

I'd like to share something I wrote about many of the things I cannot do.

Imagine a World

Imagine a world where where

Imagine this world. Imagine living in this world every day of your life for the past 12 years and for the next forty years or more. I am still young. This is my world. This is my world living with fibromyalgia.

Marie

Contact Marie at: [email protected]