Wednesday, February 24, 2010

My new reality

Up to this point I have mainly written about the mechanics of what took place with little on the impact this really had on me and my family.

I was a divorced mom of 2 and involved in a new relationship at the time this all started. My kids were 9 and 10 years old.

I was very active exercising an hour a day almost everyday. I had grown up very heavily involved in sports and I was fiercely independent.

I was very strong physically and mentally.

By the time I started seeing the rheumatologist, my whole world had changed.

I got up every morning and took a shower for work. After the shower, I had to lay down in bed and rest before I could get dressed. After getting dressed, I had to lay down and rest before leaving for work.

I could not tie my own shoes. I did not have the strength to hold my body in a bent over position to tie my shoes so my 10 year old daughter would tie them for me.

I could not hold a blow dryer above my head long enough to dry my hair, which was falling out by the handful.

We lived in a second floor apartment with no elevator. To walk up or down the stairs required a rest stop half way.

If I tripped, I could not catch myself and I would fall. When I fell, my arms were not strong enough to break my fall so I would land on my face. Once I fell, I could not stand up without help.

I could not stand from any low furniture. I had to carefully choose where I would sit to make sure I could get up again.

I could barely swallow. Eating was a constant choking risk and I found myself washing each bite down with water like you would a pill.

I could not shop at the grocery or do laundry myself. I couldn't carry anything over a few pounds.

I could barely turn the steering wheel on the car using both hands. I should NOT have been driving.

I never stopped working, I never used a handicapped parking permit and I would never allow myself to stop moving. I couldn't.

My biggest fear was sitting still. I was afraid if I stopped moving, I would never move again.


  1. Amazing... you hit on something that makes me wonder... when friends, peers, family say to one that is going through a difficult physical sickness... and we say how strong you are... I wonder how often the person that is going through the sickness thinks we are crazy as they don't feel strong. But instead of feeling strong... what they/you are feeling is fear... of stopping and perhaps never moving again.

  2. Way to keep going through all of that without complaining. What a great example.

  3. MYOSITIS SUCKS!!!!!!!!!!