“Chronic. Fatigue. Syndrome. It’s An Illness.” – May 12: ME/CFS Awareness Day

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I went to my PCP (that’s Primary Care Provider for those who don’t know) last week for my monthly visit, and a new nurse takes me back to the room. It went something like this…

Her: “You’re here for a follow-up for…?”

Me: Chronic fatigue Syndrome.

Her: Oh, fatigue. So you’re tired a lot.
(As she starts looking for the computer’s questionnaire for “fatigue” patients…)

Me: No. Chronic. Fatigue. Syndrome. It’s an illness, and it’s in there.

She continues sorting through, finally finds it, where I helpfully point out it’s listed as just “Chronic Fatigue,” but reassure her it has the right questions. The screen is huge, and I’ve done this so very many times…

She begins reading through the questionnaire the computer provides:

Her: And when did this start?

Me: 1999
(by now I know she’s NOT in the right place, she’s doing a new patient questionnaire, not a follow-up…)(sigh)

Her: And what brought this on: stress, viral infection, accident, yada yada yada…

Me: (hard stare)
Me: (thinking: do I really want or need to get into this with this ignorant nurse who couldn’t care less? I have a blazing migraine and ear infection and just want to see my most excellent doctor. I am not in the mood to patiently educate yet another nurse today.)
Me: Possibly a lot of things, but even scientists don’t know for sure what causes it.

Her: (she looks up briefly, startled)
Her: Oh… Is it relapsing, constant, or getting worse?

Me: Constantly getting worse.

Her: Are your symptoms worse after physical activity?

Me: Oh, are they ever.

Her: And do you have: unrefreshing sleep… impaired cognitive ability… decrease in activity level that interferes with normal activities… migraines or other headaches… muscle pain… weakness… gastrointestinal pain or bloating… etc etc etc

She glances over and sees me nodding my head, yes, to everything.

Her voice has gotten softer and lower as she’s moved down the list, and she trails off before she gets to the end. She wound up not asking me all the questions, and I should know, having done this once a month for years.

Me: I can make it easy for you. I have every single one of the dozens of symptoms on the list, with exception of diarrhea.

She looks at me with surprise.

Me: Next section: Yes, medications help, to some extent, but not enough.
Me: Yes, they cause lots of side effects, such as nausea, heartburn, headaches, etc. I take meds to deal with the side effects of my meds, but no, it’s not nearly enough. I’ve been housebound since 2007.

Me: Next section: yes, I’ve tried supplements and they do help, as does meditation, massage, and physical therapy. Acupuncture was questionable.

She is busy clicking boxes.

I really couldn’t tell, when she left, if she was upset at the thought of an illness that she’d never heard of causing such issues for such a long time, if she was overwhelmed, or just didn’t care. She didn’t look up when she stammered, “I hope you get to feeling better soon.” But as I reflect back on it, her shoulders were hunched, and she kinda looked like a dog who has been beaten… or maybe like someone about to cry. I honestly don’t know. I wasn’t mean or snippy, I was just matter-of-fact.

This is what it is.

I rested my blazing head down on the edge of the table, closed my eyes against the too-bright lights, and practiced my deep breathing while I waited for my doctor to come in. I couldn’t wait to get back home, away from the lights, the ordinary sounds of life, that brought such searing pain to my oversensitive brain, back into my girl cave and the dark and quiet… one breath, one moment, at a time… but how I longed to set foot in a store, or just ride in the car without sunglasses and a scarf over my eyes…

But, This is what it is.

And what it is, is known as Chronic Fatigue Syndrome in the U.S., although in other countries – and by the WHO – what I have is ME: Myalgic Encephalomylitis.
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5 thoughts on ““Chronic. Fatigue. Syndrome. It’s An Illness.” – May 12: ME/CFS Awareness Day

  1. Well done, well said.
    It’s good to see so many people stepping up and making their mark, from distinctly limited resources.
    Many will not realise what it takes out of a day, to put a post together, when on such a tight energy budget.

    A fellow 12th May Blog Bomber, slowly and gently working through the other contributions.
    This I can do. I’ll pay tomorrow.
    Sometimes that simply has to be done, though it’s not good pacing.

    Like

  2. Thank you for conveying so well what doctor visits are like for so many with this illness. I suspect that nurse felt bad and embarrassed with increasing awareness of how misinformed and even flip she was initially. It’s outrageous that so many medical people must encounter persons with the illness who then must educate them in order for them to have any accurate picture. No thanks to the federal government or the lazy or bought press (with a few notable exceptions) for this climate of ignorance.

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  3. I hope the doctor was good to you, Ash. Thank you for writing, as always. The last time I went to my doctor, he walked out on me saying I had too many symptoms. Now, I’m gun shy. Still, I have an appt., with a Rhuematologist tomorrow, which I dread. I dread it b/c I am sick of doctors not knowing or either not believing in CFS! So sick of it. I wish I’d never been diagnosed with fibromyalgia, b/c in fact, I have come to believe if I do have that, then it is only b/c of CFS. sigh…

    I am moving, again, I think. I can’t stand the street lights and city noises, nor the many people and all the energy that comes with that. I put a sign on my door for several days that read, “No. No. No!” I added, “Keep moving. Don’t knock.” I had peace too and things have calmed. Seems like my little container garden has brought the entire neighborhood to my little corner and the people have worn me out.

    I hope today is okay for you. It is damp and rainy here, so my joints hurt, and fatigue keeps me feeling like I’m half asleep. And my hands, esp., my thumbs, hurt all the time now.

    My nurses never say much, but I’m glad to have read this in preparation for my appointment tomorrow.

    Love,
    Your Spirit Sister,
    Michelle.

    Like

  4. Pingback: Синдром хронической усталости. Это болезнь (Chronic Fatigue Syndrome — it’s illness) | merussia

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