Numbers and Chronic Illness

blogging, challenge, Chronic Illnes, Health, ME/CFS, writing, , , , , 28 Comments

It’s been 5 years since illness knocked me off my feet.

Tuesday, I visited the doctor with a list of 12 symptoms to discuss. She had 4 things to cover with me. We spent 1 hour and she took 2 samples,
and set me up with 1 specialist and 3 more tests.

She gave me the second cognitive functioning test, which I scored 30/30 on, demonstrating that it is mental fatigue related to my illness and not dementia or other causing the current impairment.

Then she emailed me a link to the latest research and tips for managing this disease, with a note to make sure I watch the first video in the series recommending 6 steps to boost energy.

The video is based on circadian rhythms, recommends exposure to sunlight within 30 minutes of waking, exiting screens 1 hour before sleep, and limiting eating to 2 hour shorter window per day, among other things.

“This is a remitting and relapsing disease,” she told a discouraged me. “Go back to the basics and retrain yourself.”

The basics. Standing no longer than 7 minutes. Sitting upright, feet on floor, no longer than 15. If there is physical activity on 1 day, don’t plan anything for the next 2.

This week, I’ve challenged us to look at how numbers play out in our lives. Clearly, chronic illness can be defined by numeric patterns.

It all makes perfect sense, and should be doable, except my mind has so much more it wants to accomplish. Sigh.

(Written for V.J.’s Weekly Challenge: Numerology)

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Permission to write, paint, and imagine are the gifts I gave myself when chronic illness hit - a fair exchange: being for doing. Relevance is an attitude. Humour essential.

28 thoughts on “Numbers and Chronic Illness”

  2. Specialists can make those trainings seem to simple to implement but I do not find them successfull longterm. But I guess we keep searching and trying. I hope they worked well for you with practice ❤

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      1. Ooh thanks for the heads up. I’ll have a look at it now I changed the name recently enough its chronicbodylove.wordpress.com

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  4. This must be exhausting emotionally, you have embarked on a process though and you have a new beginning underway. I don’t have a clue how this must be, but I do have an underlying concern for my own future. What a relief that it is not dementia, one good thing, and medical support. I couldn’t watch the video as it diverted to a message that says “Registrations closed” so whether it detected an external log in from a foreign country or not? Thank you for sharing this.

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  5. It has been a difficult time for you V.J. I am sorry you are having all these symptoms. At least some of them have been addressed though it still doesn’t make them better. Thee most we can do is make an effort to unseat ourselves from old patterns and relearn the tender loving care our being is crying for. At our age, the ups and downs and al over again gets more complicated. I feel for you. Big hugs 🤗, know that you have been a huge inspiration to me.

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    1. You are a dear, Hélène. Your words bring tears to my eyes. It means a lot to be understood. I used to say that living with chronic illness is like wading through mud. Lately it has been more like trying to walk in setting concrete. One day at a time, right?

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  7. I’m so sorry for your discouragement, as well as the illness, V.J. I find Depression to be “remitting and relapsing” as well. Unending battles, we have on earth.

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  8. I’ve bookmarked that video. Will watch when I have fewer distractions (today is get-packed-to-travel day – off on a weekend jaunt).
    Fatigue is a spectrum, and a bit different for each of us. I wish all of us success in lessening its impact. Thanks for the video link.

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  9. Even though the appointment was discouraging I know you were glad to learn that your cognitive issues were actually mental fatigue instead of dementia. I’m sorry you’re having such a tough time right now, dear friend. Hope you’re able to get some concrete answers from your tests and some relief from going back to the basics for now. Sending hugs.

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