Autoimmune Diseases/Rare Diseases/Spoonies

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mvskoke_yekce3000
mvskoke_yekce3000 Posts: 9 Member
in Introduce Yourself
Her’sce! I used MFP for a few years. I canceled my account because of my health. I have 7 autoimmune diseases and 2 that are also rare diseases. What is a Spoonie? The spoon theory or metaphor is a disability metaphor combination of willpower, fatigue and other factors. The theory is used to explain the reduced amount of mental and physical energy available for activities of living and productive tasks that may result from disabilities or chronic illnesses. Spoons are a visual representation used as a unit of measure to quantify how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person “recharges” through rest. A person that runs out of spoons has no choice but to rest until their spoons are replenished.

This metaphor is used to describe the planning that many people have to do to conserve and ration their energy to accomplish their activities of daily living. #SpoonieStrong

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  • DeliciousAmbiguity1
    DeliciousAmbiguity1 Posts: 75 Member
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    Hi.. Yes me. I am newly unwell and slowly coming to terms with my limitations. It has not been an easy journey. it is hard for others to understand hidden chronic illnesses. I am still struggling with the embarrassment I feel around my bodies failings and how others perceive me but I am working on it😊. Feel free to add me.
  • tnh2o
    tnh2o Posts: 158 Member
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    I have 4 autoimmune disorders, the first was diagnosed 30 years ago. I'm a just carry on type of person so it took a long time to find out what was wrong- due to some reluctance on my part, and missed diagnosis on several doctors' part. The good news is that I'm in my mid-sixties and a very active person. Eating a healthy diet (which I have not always done) is critical to our well-being.
  • mvskoke_yekce3000
    mvskoke_yekce3000 Posts: 9 Member
    edited August 2020
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    It took me a long to receive a correct diagnosis as it does with many individuals. I also have insomnia 🙃 and have since I was a teenager. I was constantly in and out of hospitals and urgent care clinics. These are the reasons I had my other MFP account deleted.

    I try not to overthink/analyze things. I have worked graveyard shift twice. So clearly my lunch break was after midnight. My sleep 💤 schedule is basically the same as when I worked graveyard. It’s 1:35 AM CST and I just ate my dinner at 1 AM CST. Lol 😂 Yes, this is my life. I’m going to do a bit of cleaning, walk about 30-45 minutes, shower and cook dinner for later today. My dinner entries will usually be after midnight. I do not list them as “breakfast.”

    I participate in a lot of chronic illnesses/diseases education webinars. One is scheduled for 10 AM EST. So, I need to try to get a bit of sleep after being productive.

    I started subscribing to a lot of YouTube fitness bloggers after the indoor track was removed from the local YMCA locations in my area. I do hike when the temperature is not too hot or humid outside. I purchased a newest model Apple Watch ⌚️ which has additional features that my older model did not have. One important feature for me is fall detection.

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