what i’ve learned so far…

On any given day you will either find me like this:IMG_8159or like this:IMG_8164I’m only in bed when sick, which happens for a certain amount of time each day due to the overwhelming fatigue that’s part of sarcoidosis. But as soon as the fog lifts, the type A person emerges and I’m suddenly driven to accomplish great things. Like painting a room or organizing the storage area or refinishing the kitchen cabinets… not exactly small jobs but doable for me. And I do them…whenever I can. Then I pay with several days of not being able to get out of bed at all! This can be explained by the popular “spoon theory” where, with chronic illness you start your day with a certain amount of energy (spoons) and depending on how quickly you run through your allotment, you could end up with nothing left by the end of the day (or week). For instance, we always wanted to go to Florida over the winter. We finally got the chance to do so with free plane tickets, room and board at the in-laws, so off we went. This trip required organizing 5 people and all the hubbub that goes with the airport, Southwest hassles, etc. I spent the entire week on the sofa in Florida, despite the dreamy weather because I had used up too much energy getting there!

So I’ve understood now the importance of rest and I feel less guilty about my daily time in bed. But I still start each day feeling a tremendous urgency that I must get so much done. The feeling that there’s not enough time in the day doesn’t simply go away because you stop working. Never have I entertained sitting on the couch to watch TV during the day. There’s still too much to do. I can always make things better for my family, better for the house and the dogs. I am just so surprised that I still have that panicky feeling that there must be something I’ve forgotten that NEEDS to get done. Since the summer after 11th grade when I did a medical internship, all my free time has either been occupied studying or working in medical school, internship, residency and then jobs where the pay was insufficient because of my mothering needs. I think I took a 2 week vacation a couple of times but always with kids in tow. So now, with all this new time on my hands, I’m seeing that worrying became for me a difficult habit to break.

I’ve also learned how important it is to nurture creativity. The truth is that if I hadn’t been pushed to excel in school and to become a doctor, I would’ve definitely chosen a different kind of life. For one, I might not have worked at all. I might have married young, had an even larger family. I might have considered interior design. Crafting makes me happy. All house related chores make me feel fulfilled-cooking, cleaning, laundry, mothering. I think it’s pretty pathetic that many parents send their kids along their way without any guidance concerning how to live a fulfilling life. How to treat your spouse (especially in that all important first year of marriage), how to manage your finances, how to nurture yourself properly to prevent burnout (and maybe sarcoidosis?) There is so much chronic illness now that may be linked to stress-is this because our society is so stressed out? Shouldn’t we all have learned that it’s not about how much money you make, but about how to live with less, doing what you love, which gives you more time and fewer worries and ultimately better health?

I am happier now despite being sick than I’ve ever been. Despite that panicky daily feeling, I am finally doing the things I love. I have time, I am nurturing my creative side and I have plenty  of time with the people and animals that I love. What could be better? And despite having to budget very carefully, I am finally living the life I want.


(of note-Mortimer’s life had to disappear, as my teenagers were too embarrassed by it…)

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