Let's Play It By Ear

 "Let's play it by ear" is the warrior cry of the chronically ill. It is an enormous challenge to plan life in advance as I never know how I'm going to be feeling from one moment to the next. With this comes a lot of guilt.

I feel guilty for making my husband miss out on having people over as much as maybe he'd like. Guilty about not going to friends homes as often as I'd like. Guilty for turning down fun invitations to places because I'm too exhausted to go, or the time of day is wrong (it's during "rest time") or the location isn't accessible. 

I feel guilty not being able to spend a full day away from home and making everyone have to come back home early so I can rest. I feel guilty spending a whole day sleeping after doing something exhausting. Guilty for not helping my mom and son out as much as I'd like to. Guilt also comes when I can't do something myself and I need help. 

Behind all of this "guilt" is a great, big, SHOULD.

I SHOULD be able to make it all day long without a rest.
I SHOULD be able to go to someone's house to visit for hours.
I SHOULD be able to travel.
I SHOULD be able to make plans and stick to them.
I SHOULD be able to get up and get on with my day in a productive way.
I SHOULD be able to help others.

But none of these SHOULD's should be here at all. Because of "can't." I am a disabled person unable to do these things. That is the reality of the situation. I can want to. Even feel like I "should." But I can't. So I don't. 

So instead we "play it by ear." Adjust when we need to. Do what I can and skip what I can't. Adjust our plans (or cancel them) and work around my needs. That's the fact of life right now. No need to guilt myself about it or "should all over myself." None of these feelings are helpful or healthy.

It is helpful to remind myself of that when the guilt starts to creep up.