Guilt

For so many years I was in bed for 6 out of 7 days a week if not all 7.  I did the best I could as a parent: I helped with homework, made sure the kids were bathed, had great discussions with them, read to them, fed them, loved them and tried to be the best parent I could.  Often this was from bed.  My bed became like the kitchen table in most homes - we had picnics on it, did homework, played sorry or uno - all on my bed.

I didn't want to be there.  I wanted to be running around and chasing my kids, playing with them but I was in so much pain that I couldn't.  I spent many years with my daily pain at an 8, 9 or 10.  In September 2009 I had a neurostimulator implanted and it dropped my pain to a 7 which I thought was awesome.  I started volunteering and getting out more.  I was elated to be able to go grocery shopping.  But, I was still at a 7 and spent 3 or 4 days a week in bed.  Sometimes more, sometimes less depending on how much I was pushing my body.

Now, we have found medication that has dropped my pain to a 6 and sometimes a 5.  I feel like I should be going 24/7.  I have guilt.  I have so much to make up for.  I am volunteering for everything I possibly can.  I am starting the chronic pain support group.  I am volunteering for hospice.  I have plans for the future.  I am constantly cleaning the house and trying to run the kids around instead of making Tim or Aunt Terry help out.  I feel that I have no excuse for not being superwoman and conquering the world.  Pain at a 6 isn't that bad...

Except it kind of is.  I can't fall asleep during the last week.  It is taking anywhere from an hour to 3 or more to fall asleep as the pain is at an 8/9/10 when I finally stop moving and pushing and allow my body to relax.  Part of me feels that this is a small price to pay to make up for lost time.  The other part of me is exhausted.  I cannot seem to find a balance but I feel guilty for not doing more.  If I existed and volunteered when pain was a 7/8 then I have NO excuse for not doing twice as much when pain is at a 6/7 or sometimes a 5!

Chronic pain and how we cope is complex and I don't pretend to have all the answers.  I admit that right now I am stumped.  I don't know how to balance my life and the desires to contribute to society - not to mention the sheer joy at being able to do so - with the needs of my body and accepting that I still need a few days a week of down time for my body to just exist.  I feel great amounts of guilt.  I feel a duty to show my children how to overcome a difficulty or pain and keep going.  I want them to see me trying harder everyday and never giving up.

I just keep thinking of all I missed out on and I don't want to miss out now.  Besides, I have plans for my future and I cannot adequately convey what it is like to finally have a future.  We had come to accept not being able to do things and now that I can, I can't stop.