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.
So I’ve been crawling my way back and working hard since this will be the first time I will be solo since I’ve become home-bound and dependent on my husband for help with basic necessities. The last time I was solo, he went to Minnesota for our friend’s wedding in September. I was still able to drive myself to a store then, and I even drove myself to Costco to pick up my medicine. I haven’t driven myself to a store since then. That is not my reality anymore.
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