Sorry for the silence on the blog the last few
weeks. May was a bit of a rough ride for me. I had a “probably should go to the ER” day almost every week during the month and then
got hit with some kind of GI virus which I termed “barfing disease.” It’s taken
me a few weeks to feel more like my regular broken self instead of unable to
leave my bed or eat food. I’m still fighting nausea every day.
But I’m getting back to my exercise routine. I’m on
the upswing and have a good feeling about June.
Mainly what terrified me the last few weeks as I
could feel the deconditioning setting in as I had to spend most of my time in
bed was the fact that I had to get my strength back because I will have to go
it alone for the first time in almost a year this weekend. Deconditioning is your worst enemy with POTS and it sets in so quickly and is so hard to climb out of. My husband is going
on a trip this weekend to participate in the Tough Mudder in Tahoe. He is going
to get electrocuted, get hit with tear gas, and jump in ice water over a 12
mile course, and he couldn’t be more excited about it. He’ll have a great time.
Plus, he gets to escape the 100+ degree weather we’re having.
When he left in September, I had just gone on
medical leave and had every intention of returning to work in a week or two. I
was still trying to make everyone, including myself, believe I was still
capably independent and able to have a career—not fighting an invisible decline that was steadily chipping away at my independence. In those first few days of his
trip, it started to dawn on me how dependent I had become, how much I was
struggling to do basic things. I realized that I had been living a lie for a
very long time. That realization came at just the right time. I wrote this post about authenticity during those few days and made a deliberate shift in my life and self-perception—finally
embracing authenticity and honesty. It was the catalyst that finally helped me accept and appreciate my limitations. And I haven’t looked back. Life is so much
better for it.
I have this fairy tale image of how it’s going to go
this weekend:
I’ll get our house clean while listening to a
lot of jazz, play my keyboard, read, make myself meals, exercise
every day, watch all four hours of Kenneth Branagh’s Hamlet and other nerdy
things husband isn’t interested in, do some painting and writing, my friends
will come over and we’ll drink wine, sing, play games…..
A fairy tale indeed.
I’ll try to do some of those things but I’ll also
have to be very careful not to max out all of my spoons so I can keep up with
basic necessities. I can't do anything crazy like trying to drive or try to shower in
the morning or get over ambitious with my exercise goals. I will take it one moment at
a time, try not push myself too hard so I don't end up bedridden again and try not to panic as I wake up in the middle of the night not breathing. Slow and steady. My goal is to successfully make it through.
I want to say I was able to do it.
I am keenly aware that there are many Spoonies out
there who regularly go it alone or who are single and do this alone every day. I applaud your tenacity and courage. It is no easy feat because
there is very little room for error when you have to do this without help. You are true warriors. Living with chronic illness is a bit like caring for a body that is an impetuous toddler: your will is subjugated to the whims or tantrums the body will
unleash at any moment. Any sense of control over your life is a thin veneer you feign to conceal what is truly fathomless chaos. Yet, we keep going and keep fighting. In the words of Elizabeth Taylor...
So all of you out there going it alone or who have
access to invaluable help, you got this. We got this. Wishing you all the best
First of all, the picture at the top really hit my heart. Yes. That sums this experience up. And this: "Living with chronic illness is a bit like caring for a body that is an impetuous toddler: your will is subjugated to the whims or tantrums the body will unleash at any moment. Any sense of control over your life is a thin veneer you feign to conceal what is truly fathomless chaos." So true. Such a great analogy. I try not to think about how I would function if something ever happened to my husband. So I understand. I hope your weekend goes well. Wishing you the best.
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