Wonder Woman!!!

August 4, 2009 at 10:34 am

Tara (and Stacy),

My heart goes out to you. I know when I was younger and still had family in the house I was expected to be wonder woman – work, clean, nurture, check homework, cook, do laundry, etc, etc.

I’m older now and live by myself. I was diagnosed last year with CIDP and what I [U]finally[/U] learned was how to say no. My mother is bi-polar, suffers from strokes and TIAs and is very needy. And I was her primary care giver as my brother works out of country and my sister is in a different state. I could barely hold on – was working only 20 hrs/week and had trouble doing that – and in bed in pain the rest of the time. Yet the demands kept coming. So I learned how to say no.

It’s difficult for folks without this illness to understand no matter how much they love and care about you. I always get the “but you look so good – how can you be sick?” But when I started saying no, my family finally paid attention. My sister told me she could not remember the last time when I said no to family – but had heard me say no several times in one month and that really got her attention. My mother now lives near my sister and that demand/expectation is removed.

I believe you should pick what you do very carefully and learn to say no to your family or just to leave some things undone. Think of it this way – each day you wake up with a water bottle filled with your energy for that day. If you do more strenuous things (like scrub a bathtub), the water bottle empties faster. If you have high stress (like my mom’s assisted living home calling at 2:00 am because Mom is insisting on …), the water bottle empties faster. The most difficult thing I had to figure out was how to ultilze my limited energy so that I did what absolutely had to be done but also so that I found some pleasure each day. I had to redefine my priorities and decided some things could either be done by others or simply left undone (Christmas cards didn’t get sent last year … oh well!). But I am back working full-time.

Maybe you could establish boundaries around the expectations you place on yourself. Then maybe have a family pow-wow and be very honest about the things you are letting go and explain that some days the water bottle is fuller than other days but that you will be open and honest about which kind of day you are having and your expectation is that they will give you total support on the days your water bottle is low or empty.

It took me to be almost 60 and to get sick before I learned how to place boundaries with my family. And I hope and pray your family, even if they can’t ever completely understand, will be accepting of and sensitive to your limitations.