A former clinical psychologist and sailor, I’ve had myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since 1990 and have been almost completely housebound, with both neurological and immune system symptoms, all of that time. ME/CFS is a serious, long-term illness that affects many body systems. While each year has come with more than its share of difficulties, this past year was loaded with extensive dental work, back problems, and extended voice loss (I also have muscle tension dysphonia).
I had a small break and hoped nothing further would hit when suddenly a bout of vertigo pinned me down and has left me holding onto things in order to move across a room. My survival mantra is “this, too, shall pass,” and I give thanks to wiser teachers than myself in attempting to let that mantra sustain me.
My hope is that this year I’ll have better days and more of them in a row–days when I’m not too exhausted or swimmy-headed to take my power chair for a small ride outside. My hope is that I won’t let frustration or discouragement drag me down and that my poetry will continue to lift me into higher places.
And my hope, besides dealing with adverse times better myself, is that I will no longer have to explain this illness to any new doctor I might have to see. I hope I will no longer see hidden eye rolls from new (to me) health practitioners who still think this illness isn’t real, or doctors who toss aside any educational information I might bring with me. I hope I won’t see a diagnosis of “emotional problems” reflected in their faces.
Yes, I want a better year healthwise, but it’s also time for this disease to be taught routinely in medical schools, so that doctors (aside from my internist and specialist) can tell me new things about it rather than vice versa. I hope very much for respect and assistance without fighting for it.
Lake Worth, Florida