I love Fall but it doesn’t love me!

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Fall and Spring are two of my favorite times of year. The weather is in the optimum range during the day with a nip of chill at night. In Fall, the leaves are changing into brilliant colors that capture images in my mind. In Spring, the new leaves and stirrings of life after winter give me hope. It is a cycle. I am fortunate enough to live in a place that has four seasons (most of the time).

While I love this time of year, it does not love me. You see, with lupus and fibro and on and on, the weather changes actually can create problems int he form of pain and swelling and such. Add to that the pressures of the barometer and well, you can see it is not especially a comfortable time for those of us with lupus.

So I have been under the weather, so to speak, for a bit now. I have had pneumonia and a particularly bad flare. I am still recovering from them. I find I will be wide awake one minute then sound asleep a second later only to wake up and find that I have slept for a few hours. In other words, my body has taken over. If you are a lupie, you may have experienced this phenomenon as well. It is called “toxic fatigue”.

To help you picture how it feels to one who has it, think about how you feel as you wake up. Most feel refreshed, and ready to face the day ahead of them. If you have toxic fatigue, you literally are aware of being semi-awake but find it terribly hard to pull out of the fog that has you surrounded and is calling you back to sleep. You literally fight to wake up and get started on your day. Sounds kinda scary doesn’t it? Yet, that is how I have been for a few weeks now. It is indeed scary. I mean, what if I cannot wake up? I live alone so only my cat would know it. Is that maudlin thinking? Yes it is, but oh so true as well. 

Have any of you experienced this toxic fatigue? How would you describe it?  Please share your experiences! Thanks for reading!

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8 thoughts on “I love Fall but it doesn’t love me!

  1. Patti Pacer

    I have experienced but have found it difficult to explain it as well as you did. I remember on late afternoon laying down for a short nap only to wake up several hours later after it was dark. Because the time on the clock was around 7:00 I freaked out thinking I had slept until the next morning.

    Other times I can be wide awake like you described and then fall sound asleep not able to remember what I had been doing before falling asleep. I have to back track to figure out what was the last thing I remember. It does get scary and like you I have been living alone and it worries my family. This weekend I am moving into a large house with 4 roommates. This will help my family stop worrying so much.

    Thank you for putting into words what we all have experienced.
    Patti

    • Aw Patti, thank you for the compliment. I have had a hard time describing it myself but just tried explaining it in terms of what I knew and it seems to work. It can be terrifying at times yet there is not a lot we can do about it. I recently separated from my husband and now live in a little four room house, much more peaceful and happy not to be in the previous environment. I do miss having someone around to “find” me if needed, but truth be told, I have about the same as when I lived with my husband. I am glad you found a solution. Hope it goes well for you! Let me know how you are doing! ~Jen

    • Aw Patti, thank you for the compliment. I have had a hard time describing it myself but just tried explaining it in terms of what I knew and it seems to work. It can be terrifying at times yet there is not a lot we can do about it. I recently separated from my husband and now live in a little four room house, much more peaceful and happy not to be in the previous environment. I do miss having someone around to “find” me if needed, but truth be told, I have about the same as when I lived with my husband. I am glad you found a solution. Hope it goes well for you! Let me know how you are doing! ~Jen

  2. caridad Mendoza

    Yes, many times and for long periods of time. As I try to get ready to go to work I wonder how am I going to make it thru the day, but I always do push myself but at the end i have to take a couple of sick days.I also had a bout of Pneumonitis, so they say, it felt like in the past when I had pneumonia, now they are blaming the Methotrexate which was helping with the RA pain and took me off, which I’m glad because a felt miserable most of the time, so they put me on prednisone which is also driving me crazy, but while on it the anergy is amazing so now that I’m going down slowly here come the toxic fatigue to haunt me again!

    • Oh Caridad I feel your pain! I was on methotrexate for a long time and it made me sick, nausea and vomiting. I hated it! I love the prednisone activity energy but hate the lack of sleep and the lowering brings its own set of issues. I am glad to know others feel it too, the fatigue that is. I hate that others go through this but it is encouraging to those of us who have it. Thanks Caridad! ~Jen

    • Oh Caridad I feel your pain! I was on methotrexate for a long time and it made me sick, nausea and vomiting. I hated it! I love the prednisone activity energy but hate the lack of sleep and the lowering brings its own set of issues. I am glad to know others feel it too, the fatigue that is. I hate that others go through this but it is encouraging to those of us who have it. Thanks Caridad! ~Jen

      • caridad Mendoza

        Just a thought:
        I believe we are the strongest people in the world…and if someone else around us have to deal with the daily challenges life brings those with Lupus they would have a better undestanding. I, for one, have to confess and admit I have sinned, I could not understand my mother when she complained of not ever feeling well, everyday she had pains and it was hard to believe especially since her diagnose was in the air and not really confirmed with the kind of testing we have today. I tell my daughter this because my family and everyone outthere, even my nurse practitioners friends, insist that if I were to exercise every day I would feel better. They don’t understand how much it takes out of me to just do my 8-9 hour shift running around at the hospital, without the methotrexate now my knees are so swollen at the end of the day it is a miracle i can even walk to the car. Believe me NOBODY will ever understand! If you get cancer you either get cure or die, you go thru months of chemo and or radiation but you know there is and end to it all, we don’t have an end it is forever, years, and friends fade away slowly, family stop helping…and one begins to feel like a burden…but we keep going, at least I do and with a smile, and nobody really knows what’s behind the smile. I’m sorry for the tirade but don’t you feel as if cancer would have been a better deal?

        • Caridad,
          There are many times that I get frustrated like you. I have been alone in my little island on many occasions. The key for me is venting, like you are now, because it helps me release that negative energy and be able to concentrate on the positives. Is it easy? Nope. But as you said, we take each day and move forward. As for exercise, I found Pilates helps me. I can even do it in bed on those bad days. Sometimes it is just one move but every little bit helps!! I have a previous post about it with a link to get more info. By the way, I am glad you are here!! ~Jen

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