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Tag Archives: friends
Compassion
I have spent a lot of time reflecting on compassion this year. It’s been impossible not to, as I read the news each day. 2020 has been–well, it’s been 2020. I have felt such anger and frustration at the lack … Continue reading →
Drinking From A Fire Hose
News is coming at the ME community at a crazy pace right now. Each time I go online, there is another controversial article that requires a response. First there was the NPR chronic pain piece and ensuing debacle. Then came … Continue reading →
Posted in Advocacy, Occupying
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Tagged capacity, conference, control, coping, emotional, family, friends, frustration, limitations, Millions Missing, NIH, occupy, overwhelmed, pacing, persistence, post-exertional malaise, priorities, researchers, self-care, stress, survival
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16 Comments
“It is no bad thing to celebrate a simple life.”
It’s been twenty-four years. Twenty-four years since the morning I woke up with a sore throat, went to work, and got so sick I could barely walk home. Twenty-four years since I became incurable. And this year, I hardly noticed. … Continue reading →
Posted in Occupying
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Tagged action, balance, coping, family, friends, grief, living with, occupy, persistence, personal, sickaversary, strength, stress, suffering, triumph, victory
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44 Comments
Taking Care of Your Self
Self-care is one of those internet buzzwords that people casually throw around, as if a coloring book or a kitty will solve all your problems. I’m not knocking coloring books and kitties, but generally I think that kind of advice … Continue reading →
Posted in Occupying
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Tagged action, capacity, control, coping, creativity, emotonal, exercise, family, friends, frustration, funny, laugh, limitations, living with, love, music, occupy, pacing, pain, persistence, personal, self-care, spiritual, stress, suffering, survival
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22 Comments
Blaze of Glory
Pacing is . . . actually, my descriptions of pacing generally involve expletives that are not appropriate for this blog, so we’ll stick with “Pacing is challenging.” One positive side effect of my pacing efforts, though, is that I am … Continue reading →
Posted in Occupying
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Tagged choices, confused, coping, friends, heart rate monitor, living with, normalcy, orthostatic intolerance, pacing, pain, post-exertional malaise, risk, suffering
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13 Comments
Imperfect
I’ve had a craptastic week. Three crash days, including one that involved a three hour “nap.” I don’t understand what triggered these crash days, but I never do. Usually, crash days take me by surprise because whatever activity I’ve been … Continue reading →
Posted in Occupying
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Tagged anaerobic, coping, CPET, crash, friends, heart rate monitor, living with, occupy, pacing, post-exertional malaise, support
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11 Comments
“Take Care Of Each Other”
“Take care of each other.” Those were the closing words in Anne Ortegren’s suicide letter. Anne’s death came as a shock to many of us, myself included. Anne was a friend and long-time supporter of my work. She made a … Continue reading →