I’m Trying to Make Lemon Pie

I’m Trying to Make Lemon Pie
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Like many others, I’ve been forced to accept the current situation as our “new normal” for the foreseeable future.

On most days, I get up, take care of the hounds and the cats, then hop online to work from home for a few hours. After lunch, I usually head to the barn, and then wind up doing more work after dinner when I get back. It’s a different schedule from what I’m used to, but I’m doing pretty well.

The hardest part for me about working from home is the amount of time spent on my computer. While I spend much of my day on a computer at work, too, I’ll also get up to greet students in the halls between classes, teach class once a day, and interact with my colleagues. I get so stiff while sitting so I must make sure to get up and move around while I’m at home.

With EDS, stiffness and tightness are my body’s response to being overly flexible. As I discussed in last week’s column, I currently don’t have the ability to combat it with bodywork.

I’ve noticed some interesting restrictions as a result. If I lie down on my stomach, I’m only comfortable if I turn my head to the left, not to the right. If I lie on my back, my shoulder isn’t comfortable with my right arm by my side — it has to lie across my head, almost as if I had a headache. Lying on my right side is never an option, as my chronically injured shoulder will scream at me in a matter of minutes. That doesn’t leave many options for comfortable sleep positions.

My right arm has dropped to about a 40% range of motion due to muscle tightness and soreness. My response is largely to ignore all of this as much as possible. I can’t change it right now, although I do my best to manage it. So, rather than wallow in frustration, I continue to do my daily routine as much as possible.

I spent almost a dozen years with less than 25% range of motion in my right arm as well as extreme pain, so a 40% range of motion with a dull ache is a cakewalk in comparison. I can do everything but write with my left hand if I really need to, but I’ve become so adept at working with my restrictions that I can continue to do most things with my right arm.

All in all, while I’m certainly feeling the effects of social distancing, it’s nothing compared to what others with far more serious conditions are managing. When I feel annoyed, I remember that I can handle it, and that it’s much less than what I’ve dealt with before. It’s certainly less than what those who make regular hospital visits for treatment must deal with, as well as those who are immunocompromised.

For today’s positivity ending, I’ll say that when life hands you lemons, you might as well make not only lemonade, but also lemon cookies, lemon pie, or anything else that’s delicious. Don’t we have more time to bake and cook right now anyway?

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Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.

An avid equestrian and educator, Karen has been a columnist at BioNews since 2019. She was diagnosed with Ehlers-Danlos Syndrome in 2009 after a years-long search for a diagnosis that explained her symptoms. Karen enjoys working with her students, riding and caring for her two horses, Cherry and Spotty, and connecting with others in the rare disease community through her work with BioNews.
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An avid equestrian and educator, Karen has been a columnist at BioNews since 2019. She was diagnosed with Ehlers-Danlos Syndrome in 2009 after a years-long search for a diagnosis that explained her symptoms. Karen enjoys working with her students, riding and caring for her two horses, Cherry and Spotty, and connecting with others in the rare disease community through her work with BioNews.
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