Spoons: the assignment

The “Spoon Theory” has been on my mind all week.  I havent yet been able to write about it, because I have SO much to say.

If you have a chronic illness, know someone who does, or you are the caregiver, spouse or parent to someone who does, I encourage you to read the Spoon Theory here.

Since that includes EVERYONE… please come prepared to discuss it!  Your homework is to read the theory and think about it.

It would just be easier if you knew what I was talking about without me trying to explain what she says so perfectly.

I promise….. the Spoon Theory is profound.  It tells you better than I ever could what every day of my life is like.  Not for the same reason (I have MS, not Lupus) but in many of the same ways.  And if you are fighting depression, are recovering from surgery, have a chronic illness of any sort…. this piece will speak to you.

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16 Comments (+add yours?)

  1. Spavlov
    Apr 04, 2008 @ 09:42:42

    Doing my homework ………I read the spoon theory and marvel at the many things you do….and how you manage your spoons…You accomplish so much in a day ……
    Love u
    Plan to head north next Tues…Paul has Dr appt today ……………………………………….

    Reply

  2. Vicki W
    Apr 04, 2008 @ 09:53:07

    This is the best explanatin of chronic illness that I have ever read. I don’t have MS or Lupus but with chronic allergies and chemical sensitivities I could really relate. The thing that I have trouble explaining to people is the myriad of decision/choices that I have to make every day and that some days all choices are taken away from me – seemingly randomly. I work from home every Tuesday and thursday as a way to help control my allergies. This week I’ve had to go in 3 days in a row and in Spring no less. Today I am a mess! I will spend the weekend locked in my house recovering just so I can go back to work on Monday.
    The question that I often get is “how do you deal with it?” I have a couple of answers:
    1 – You deal with it because you have no choice.
    2 – We all have or will have some major “thing” to deal with in our lives. I’m lucky to know what mine is and I know that I can live with it.

    Thanks for sharing that link.

    Reply

  3. Sharon Dixon
    Apr 04, 2008 @ 19:07:19

    Gayle, thank you for sharing the spoon theory. I am ashamed to admit that I did not know you have MS. I seem to have been so wrapped up in my own problems and my husband’s health issues, particularly with his heart attack last year and his heart surgery this year. Having a husband who has been a diabetic since age 13, I often get frustrated at people who don’t understand. DH often has extreme low sugars due to being a brittle diabetic which just happens after that many years. He almost died at least once from an insulin reaction. I have trouble sleeping at night because I feel like I have to keep waking up to make sure he’s still breathing. If I go out of town, I call him before he goes to bed to have him check his blood sugar. Sometimes I call him during the middle of the night to make sure he’s okay. People can’t understand why he can’t just take his insulin and live a normal life. They have no idea of all the factors that can affect blood sugar. Every time he has a meal, we have to figure out how much he should take based on his activity level, what he’s going to eat and what his sugar is at that particular minute. So this is a very timely discussion and I’m glad you brought it up. I just read your Spoons: Chapter 1 and I look forward to seeing what else you and others have to say.

    Reply

  4. AllenQuilts
    Apr 04, 2008 @ 20:34:30

    I like that spoon theory. I think it also fits when you know you have “something” but can’t get medical validation or identification of what that “something” is…make sense? This is where I’m at….

    Reply

  5. Gayle
    Apr 04, 2008 @ 22:18:26

    Thanks for your responses. And for taking the time to read the theory. I find it really helpful, myself.

    Sally….. the key is “managing your spoons”. The real struggle for all of us! And for you too! Looking forward to seeing you and Paul soon…. safe travels.

    Sharon, you dont need to feel bad that you didnt know I have MS. There is no reason you should have. Like Vicki, I dont “look” sick. Until I am so so sick that I am in the hospital. And I surely wouldnt be at a quilt show then!

    Randi, I understand where you are. And it is a tough place to be. But the spoon theory discussion still pertains to you, and hopefully will help you or your family in some small way.

    Gayle

    Reply

  6. Trackback: Scrambled Saturday « AllenQuilts
  7. Sharon Dixon
    Apr 05, 2008 @ 15:14:09

    Randi, I can relate to your situation. A few years ago, I started running a low grade fever every day. It would come on around noon and then again around 5:00 or so. It would be sudden and it was like I could physically feel the energy draining out of me. If I was out in public, I would have to find a place to sit or go sit in the car if I could drag myself that far. I sat on the edges of a lot of store displays and I leaned my head on my husband’s shoulder in a lot of restaurants. I went to doctors who could never find a cause for it. It was so frustrating and it lasted several years. I also experienced weird sensations like pins sticking in me or bugs crawling on me along with a lot of muscle and joint pain. The odd thing is that my mother had the same thing happen to her when she was about the age I was when it happened to me. Fortunately, the fever and went away, but I still think we both have fibromyalgia or something similar that just happens to be in remission right now. Unfortunately, doctors are slow to recognize a lot of the weird ailments that seem to mostly affect women. And it is extremely frustrating to be dealing with something like that because there is a real lack of understanding on the part of family and friends.

    Reply

  8. AllenQuilts
    Apr 05, 2008 @ 15:30:35

    Yes, extrememly frustrating…I have weird intermittent symptoms. The shoulder & back pain, and bones like ribs constantly feeling “out of place” and popping and grinding. I have days with bouts of stomach upset. Occasionally dizziness, headaches often, fatigue, low grade fevers, joint stiffness and pain. Somedays, though less frequently than the others, I even experience tremors or weakness in hand, or a leg & foot. I’m actually having this right now in my left arm/hand. Started yesterday when I was trying to read a menu at a restaurant. The text in the menu was kind of “jumping” and my left hand would tremor trying to hold the menu. Then I have days where I feel pretty good, except for the shoulder/rib/back whatever that never stops hurting.

    Oh, and Sharon, I’m a fish allergy!

    Reply

  9. AllenQuilts
    Apr 05, 2008 @ 15:31:43

    Oh, and the leg/foot tremors will occur sometimes when I’m pushing on the gas pedal, or my sewing machine pedal.

    Reply

  10. Sharon Dixon
    Apr 05, 2008 @ 17:34:23

    Randi, you definitely have something weird going on. As to how to find a doctor who will go the distance and find the cause of it, I wish I knew. When I went to the doctor about the low grade fever, he said, “We’re not going to stop until we get to the bottom of this.” He did simple bloodwork, found no explanation and that was apparently the bottom of it. I just learned to live with it until it finally eased off. I still have flare ups at times, but not every day like before. I don’t know what kind of doctors you’ve seen, but I would suggest trying to find a female rheumatologist or neurologist. The reason I suggest a woman is that I think they take us more seriously rather than assuming we’re hypochondriacs.

    Reply

  11. Kathy W
    Apr 06, 2008 @ 21:28:19

    Gayle,
    I am one of the lucky ones with a never ending supply of spoons and I thank God every night for a healthy day. However, two of my closest friends have chronic illnesses; one has lupus and the other has leukemia. The spoon theory makes it so clear to me what their daily lives are like. Thank you so much!

    Reply

  12. Gina
    Apr 07, 2008 @ 09:58:17

    Great Theory….wow, need to collect myself to go read todays post… sheesh…

    Reply

  13. Lynn Douglass
    Apr 07, 2008 @ 15:42:07

    Wow, I my emotions are certainly stirred. The Spoon Theory definitely spoke to me. Having lived with chronic pain for a number of years, there are days that I feel like I can’t even get out of bed. Depression knocks on my door all the time, but I choose not to invite him in…most days. Lots more to say, but too much to think about. Thanks for posting this, Gayle.

    Reply

  14. Eileen K
    Apr 11, 2008 @ 13:48:15

    Gayle,
    I’m sorry. I’ve only known you and others through this site, not in person. We all seem just fine through our writings, don’t we?
    I have chronic pain from a couple of things, and my biggest challenge is when someone says “you don’t look sick”. I think that in itself is a form of invisbility.
    Just keep on keepin’ on.
    eileenkny

    Reply

  15. Trackback: Spoons: Plastic Spoons « Gayle’s Gallery
  16. Fannie
    Apr 24, 2008 @ 18:55:40

    Thanks for the excellent read. I get that all the time: “But you don’t look sick.” I could have been the author of the “spoon theory.” I can relate to everything. I do not have MS. I was diagnosed with lupus years ago, which seems to have gone into remission (???), but I deal with other health challenges.

    Yes, my spoons are limited every day. Creating and blogging are two things I keep extra spoons for. Regardless of what I was able or not able to do in my day, if I posted, somehow that makes me “think” I’m okay, or at least that’s one thing I feel I can control–or not.

    Some days I feel like I have to keep my extra spoon to complete a test that’s due in a few hours and feel like I have nothing left, but an extra spoon falls down from heaven, and I weep with gratitude.

    We do what we can, and whatever we can do is enough. I often think about the times I had an unlimited supply of spoons . . . when that I happens, I go create something, and when that is too overwhelming a thought, I escape by watching a movie that transports me to a place that I can run and dance in a land of spoons.

    If I could, I’d give you one of my spoons each day.

    Reply

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