Remembering
when I was Super Women…
Remembering the days when I could do it all. Laundry, groceries, gardening and working full time while raising a small brood of kids and taking care of my husband. There was plenty of time to get it all done. Oh, how I enjoyed doing it all and having it all. Weekends meant fresh laundry, the smell of fresh cut grass and lots of food in the kitchen. By Sunday I would be cooking up a storm, perhaps 3 meals at a time.
Caring
for my kids and my husband…
Was the most important thing to me in the world. Making their world a great place to belong made my world a great place to belong. It always gave me a huge sense of satisfaction. Now I have had to learn to take care of myself. Making me a priority has not been an easy feat. It doesn’t matter how many tell me to stop, it is hard to rearrange this scenario in your head.
Entertaining
the thought of not going back to work…
It has been a 360 degree change in the last 2 years. This is the final cruel blow. I would no longer have the ability to earn an income, no longer get kudos every day from students and peers, no longer have independence or freedom. I have to be taken places, checked in on every hour or so. Now instead of taking care of everyone else I am being taken care of.
Designing
my new normal…
Accepting that every day is a plan and how I plan my hours and days is the key. The scheming and planning makes a difference in the success or failure. Every move must be calculated and everything from temperature to humidity and air quality have to be considered.
Believing
in spite of the flare ups that come without warning…
and wake me in the early morning hours gasping for air. I am hooked up to a BiPap and oxygen to sleep and so I am confused. Then I put an oximeter on my finger and find out that my oxygen is normal at 92. However, my heart rate is rapid at 92-102 beats per minute. My normal heart rate is 56, so this is pretty high. Not knowing what to do I wake my husband. I feel bad waking him but I do because I need to be calmed and I don’t want to be alone. I can’t even get to the bathroom because I can’t manage without my BiPap and my Bipap cord won’t reach. Finally he wakes and gives me my beta blockers and takes my blood pressure. It’s also very high at 165/115. This is some kind of confirmation that something is wrong. But what it is, I will probably never really know.
After awhile I calm and become relaxed. The episode is over and I need to sleep now. It will take about a week to get back to my new normal and until then I will rest and care for myself. And I will believe but I will never give in.
(I tried to like your post but wordpress hates me lol) – that is a tough transition you are making xx Lowen @ livingpositivelywithdisability.com
Thanks for sharing some of your story Barbara. I loved your description of being superwoman, and would like to remind you that you’re still a superwoman – you just have different super powers now than you used to.
Finding our ‘new normal’ and learning to take care of ourselves can be difficult, but I know you’ll get there.
Blessings to you!
Such vivid writing. I love your descriptions!
Thank you for participating in the May linkup for spoonies! It’s good to see that you continue believing in yourself and your abilities. And your memories as superwoman sound beautiful, even if you can no longer do these things for your family. You sound like a fab mum regardless x
Thanks for writing this! The way you describe missing daily life with family is so vivid. The vibrant busy-ness. The activities that are also a form of care. “Weekends meant fresh laundry, the smell of fresh cut grass and lots of food in the kitchen. By Sunday I would be cooking up a storm…” And then the loss of these things…
I only think in flash moments about the shift, when I developed “full-blown” ME 4 years ago, from being more of a caretaker to being someone who can do very little care taking of other people. I appreciate the way you’ve named and described the shift. And also the loss of access to a work life that brought you pleasure and fulfillment…It’s so painful, these losses. And can be much more painful when they are not acknowledged or understood. Thanks for sharing this! It’s really meaningful to read about.
And I love the way you use the prompt words!!!
I like the way you end about never giving up. I would add, we don’t know what breakthrough or even minor improvement is around the next corner. Always something to hope for.