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Pondering tracking a particular sleep stat

Tuesday, September 29, 2020

For those of you that have followed me for some time, you're likely aware that I've been living with debilitating and disabling fatigue for a number of years now.

This year is the worst it has been. And, despite returning thyroid function to range and reining in a recently identified Cu deficiency, still no significant improvement.

Sleep time averages continue to ride above the monthly averages for every single month thus far this year (September despite having a day remaining will be no exception ... so, we're talking 9 months at this point and counting ...). And, I'm talking about nearly 4 years of data: 2017, 2018, 2019, 2020. It was 2017 when I became aware of the emerging increase in fatigue and by summer 2018 the struggle had intensified greatly, leaving me with no exercise tolerance. An intolerance that continues to this day.

I spent a number of months being put through the paces in a sleep lab. This canary, as usual, was dubbed 'unusual' and it was determined that there was no need for sleep devices such as CPAP, Bi-PAP, etc. A wedge pillow to keep me on my back was all that was needed to ensure healthy sleep. The sleep docs have no idea why I am so fatigued.

So, sleep disorders were ruled out. Thyroid dysfunction is not the issue. Cu deficiency is not the issue. What is the issue? We do not know.

What we do know is that there continue to be issues evident in my blood. Is it yet to be identified cancer? Bone marrow issues? And, even at that, what is the underlying cause? Simple aging? Environmental issues beyond my capacity to address?

We're all going to die. I know that and I'm choosing to use the energy available to me to do what I can and continue to hold out hope that my capacity to engage in life will improve.

Back to the sleep stats ...

I've averaged over 9.5 hours of sleep per night during 2020. The sleep docs have told me that they get concerned when they begin seeing sustained sleep averages greater than 9 hours. In 2018, the daily sleep average was above 9 hours. In 2019, the daily sleep average was just a bit below 9 hours. Sleep times were improving (not the fatigue), until the thyroid went ballistic in the fall of 2019.

We're still not entirely sure what the culprit was; although, we do have our suspicions. And, even with the thyroid numbers returning to range end of June and returning to optimal range mid-August, there has been no notable improvement in the sleep averages or fatigue.

I am having days where I'm able to remain awake into the evening. But, it is not a capacity that's reliable day-to-day. Some days I can do it and others, I cannot.

What I seem to be noticing is that there will be isolated or sustained stretches with sleep times exceeding 10 hours, 11 hours, 12 hours, 13 hours. So, I'm thinking it might be a good thing to begin tracking how many days each month that the sleep time exceeds 10 hours a night.

Typically, I see such things after engaging in a manner that taxes energy reserves: a chat on the telephone, a virtual interaction, an appointment with the doctor (video, in-person, telephone), a trip to the grocery store, a trip to the pharmacy, writing blogs, reading, engaging with another person no matter the method of engagement, Sparking, simple attempts to do what's necessary day-to-day.

I read something recently that really struck me. It is a quote from a covid-19 'long-hauler':

"It’s like someone cut your battery pack in half and doubled the charging time. I have to prep myself mentally for a shower." ~ Karla Monterroso, 39, of Los Angeles

I remember how shocked my new PCP was when I told her that taking a shower can leave me energetically ravaged for days to weeks. I've been using a shower bench for some time now because standing up to take a shower is simply too taxing. And, baths are off limits because of another medical condition challenging me. So, far more often than not, it is sponge baths. It is what I have the energy to manage.

Karla leads an organization that advocates for the representation of Black and Latinx people in tech, but has not been able to work full time since March. She could not get tested until about a month after she first fell ill, and only recently tested positive for coronavirus antibodies.

Karla also said, "I was a weight lifter, kayaker, hiker, white-water rafter. I can’t do anything right now."

At the time the article went to press it was noted that Karla's symptoms began 199 days ago.

I really relate to these covid long-haulers. The symptoms I am experiencing have been evident for years. I really feel for them because I suspect many of them will find themselves living my experience and so many of them are much younger than I am. And, I continue to read an estimated 30% of those infected with the covid-19 virus will find themselves falling into this 'long hauler' category.

That is A LOT of folks: 33.454,037 X .30 = 10,036,211 folks.

Are the health systems of the world and the economies of the world prepared to confront more than 10 million folks rendered disabled for the remainder of their lifetime simply because they've been infected by covid-19?

How about the impact to their families? This is serious folks. This is no joke.

Many of these long haulers experienced very mild symptoms initially only to find themselves debilitate and disabled later. Viruses are sneaky people. Very sneaky. And, covid-19 appears to be one such virus among many that appear to be at the root of experiences like mine and so many others, not just the experiences of the covid-19 long haulers. And, the doctors have been at a loss to help us. I'm happy to see attempts being made to address the experiences of the covid-9 long haulers hoping that there will be nuggets learned to help me.

Read an article regarding attempts made to address the experiences of the covid long haulers. Although one such program was created around patients older than 70, Greenspan (a doctor) quickly realized it was too vigorous for his long haulers, mostly patients in their 30s, 40s and 50s. I relate!!!

Joel Hough, 56 states: “You have to meter yourself and then wait a day or two and then see how good or bad you feel,” he said. “You can feel so great, but you’re actually hurting yourself."

Yes! So, so true!!! That's what make this experience such a challenge. You don't necessarily feel it immediately. It can sneak up on you days later and then deck you for weeks or longer!!

I continue to struggle to remain within the body's energy envelope. I seem to keep unwittingly hurting myself by doing too much. And, I feel like I'm not doing anything,

Will I need to entirely step away from Spark People as far as blogging, team participation, etc. Maybe. Hoping that will not be necessary.

Perhaps, I should give October a test and pull back with no blogging and no team participation, in addition to tracking how many days of sleep greater than 10 hours. I have today and tomorrow to mull it over.

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Member Comments About This Blog Post
    I can say I really didn't understand this until May rolling into October now November.. my husband has a terrible disease and is going thru this... just walking from the bedroom to the livingroom taxed him to the point he couldn't even walk back to the bedroom... and the fatigue lasted for days... he didn't know what was happening...he did get a diagnosis but I think there is more to it....
    i at times wish I had the gift of healing....
    72 days ago
    114 days ago
  • FITNIK2020
    You must do whatever you can to live as well as you are able. I wish you would not leave but that is selfish. You are a bright light here, and will be sorely missed.
    115 days ago
    Tracking your battery re-charging time sounds like a great idea to me -- and will undoubtedly assist you with the evidence that your doctors need.

    Gotta say, no matter your fatigue (which I do NOT downplay, not a bit) you seem to me to be fully engaged in life always. Just differently engaged, as your condition permits. .
    115 days ago
    116 days ago
    Do what is right for you, hugs :)
    116 days ago
    HUGS and prayers. You definitely have to do what is best for you. You are thought of always.
    116 days ago
  • DESIREE672
    As others have said, do what is best for you, but I agree, you would be missed.
    I’m so glad you’re getting such excellent care from health professionals.
    116 days ago
  • no profile photo CD4114015
    Jeanne, I am among those praying for you also! And I am praying for myself also. Much love to you! emoticon
    116 days ago
  • LSIG14
    I hope that you will, al least, keep posting your current status so we will know how you are. My prayers are with you as you do what you need to do!
    116 days ago
    Very interesting! I'm wondering if people who don't get Covid-19 may see changes in their sleep and energy levels due to the change in lifestyle this pandemic has for ed upon us. Do what's best for you, but if you step away from SP, you'll be missed.
    116 days ago
    Praying for the best for you, Jeanne. Hard decisions to make. emoticon
    116 days ago
  • RAMONA1954
    I hope you can get to the root of the problem sooner rather than later. I've heard DNA testing is being used in different diseases to find out of there's a genetic issue. I know my DNA says I'm low on vitamin B12 but high on Vitamin A. Weird
    116 days ago
  • BJAEGER307
    I would say Jeanne do whatever is best for you. Only you know how you feel, and what you can and cannot do. I'm praying for you and wishing you all the best that can be for you. Take care of yourself as best you can. emoticon
    116 days ago
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