This is The Spoon Theory. It has been widely spread through the Chiari family.
The lady Christine who wrote it actually has Lupus. I believe that this is the best way to help your family and friends understand what we go through daily.
Hope this helps
Anissa
Thank you for posting this. What a great way to explain Lupus to someone who doesn't understand.
Creekbank
I love this..it really does reflect how I feel on a daily basis. I sent to my close family and friends - maybe they'll understand a little more that when I cancel or can't make a meeting or social event that it is not because I don't want to....its because my spoons were all used up getting my 4 year old off to school, going to work, picking my daughter up, feeding her ...I have nothing more to give come 7 pm. Thanks for sharing this with me...it sure feels nice to know that other can articulate exactly how my life is changed using a prop as simple as a spoon. Love it!
I love spoon theory. It’s how we discuss my energy lvl each day. It really helps.
I love this, and saw it a long time ago on the original website, the first one I ever found that had any kind of lupus patients helping one another, like is done here. Thanks for posting the link. I needed the reminder for ME today, pushing a bit too hard. It's helpful for anyone beginning the journey with any chronic illness to read, and learn to not be so hard on themselves. Have to love and take great care of yourself if you want to be there for the people you love.
hugs,
Louise
I love this also!
what do you do when you use this to try to explain to a family member, and they turn it around to try to use against you later?
(ex: "you only have 10 spoons for the day, so if you don't make time for me until later in the day, you know you will be out of spoons, so I'm not important to you...")
Just a Girl -
Remind them that u may be short some spoons before you even open your eyes in the morning. Also, let everyone know that just in the 1st couple of hours of your day depending on how u feel some tasks may take more than one spoon....
I would also let them know on the really bad days that u are just glad to out of the bed. Don't be afraid to let loved ones or friends know that u don't feel good and aren't having a good day. It is also ok to ask for help. We all need to be thankful to have what we have and learn to understand that it's ok to have a couple of 15 min. time frames a day and cry and have a pity party for yourself. Go in the bathroom shut the door turn on the fan and cry. After 15 mins wash your face and clean up and come out. No more till the next time slot.
It's alright we are all human. We have emotions (happy, sad, anger). We also have that right!!!!
If I don't have spoons later its not because I don't want to it's because I just can't......
Hope this helps :)
I get mad when others try to manage my spoons. They are mine, and I don’t always count them well. Some days I have no idea until the day goes on. Others I am surprised I had that one extra bit in me. It may take me all day to get some stuff done, but it’s my day not theirs. So don’t let them or anyone else dictate to you how your time/spoons get spent. Those who complain will be sent to the bottom of the list!
I thought I felt fine, then I got volunteered to make part of diner. I didn’t even want to have diner, but I got volunteered. Then I was wiped out. Because of this I then get grilled as to why I look so bad off. I wanted to say “because I was dumb enough to let you push me around.” Instead I just shrugged it off. They don’t understand. They can’t. They see us and we look fine. Then all the spoons are spent and we may look a little closer to a wet noodle.
One night, my pushy mother decides that I need to socialize. So after a day of work, I get to go home to people there for diner. I have to walk the dogs, plus go get things from the store, and entertain. I am an introvert who works in retail. I spent my spoons and my extroverted hat was warn all day. I knew it was going to be hell. Then how dare I actually get so tired that I nearly fall asleep at the table. Seconds from literally passing out, I excuse myself and go to bed. I get grilled and told it was rude. That if I just wanted me time I should have been mo polite. Serious? I was not looking for me time. I was about to drop out. They do not get it! We push ourselves to please them, only to pay dearly for it. We have to stand up for ourselves and say what we can and can not do. It’s hard being the sofa cushion some days, as I hate feeling useless. But if I don’t listen to my body, then it will be down I go, stuck in bed for days instead of just hanging on the sofa for hours.
Arange your life how you need to. Make things easy. Whatever you can do with out, do that. When I was at my worst, I didn’t even brush my teeth. It was enough just to get up and pee on my own. Why should I brush my teeth or hair if peeing is so hard? When standing or having energy to chew is more important than brushing your hair or teeth, then that’s what you do. Right? Same with laundry, cooking, dusting, or running errands. Get someone else to do what you can not. And the things others can not or will not do, decide what you can and when. I took all day to clean the house. It is not up to what I would have done two years ago, or even a year ago. But it is clean. It smells good. There is no mess. And I don’t care how much better anyone else could have done it. You want to clean my home, knock yourself out! You want me to have time for you, come do my laundry and I will watch while you do. Make them that deal. They do stuff and spend time with you when they do.
Wow, I am shocked the way you describe your day sounds like my life. My problem is I am over my head a mile in debt. I have a very exhausting high profile job where I am in charge of an entire program office at a very large hospital, however I am the only employee in my program as well and I have so much responsibility, too many tasks and no body to delegate any of it to. I have three young children all under 9 years old and my youngest is 2. My husband is also in a very demanding energy sucking type job. My mother is in her mid 70s and still has to work full time to survive. My father took off leaving my mom bankrupt and alone, when I was 23 after being married to my mom for 26 years. He shacked up with a new women he had been cheating with for years said he found Jesus and she wonders why I don’t like her. Go figure- you can’t fix stupid. My mother in law is a whole other useless story of no help ever and my and my hubby’s family are lazy and really down right evil. I have SLE and narcolepsy along with early onset arthritis, kidney, lung and major joint problems. I feel so alone, my husband is mercy less and makes me feel guilty every week when I am so exhausted from the job, family, house work and such that I cannot crawl out of bed on Saturday to help with the kids. My boss is mean as bricks and has made it very clear she hates people with health problems and lazy slackers that take FMLA leave. So I don’t. When I finally broke down at work yesterday saying my impossible workload is killing me she said “well how can you say that when you have taken so much time off?” I said regardless of my doctors appointments that I only schedule at the last 1 to 2 hours of my shift and that I have only taken 3 days vacation time this year and I have to leave if my kids are sick with fever it does not matter what my time card says because I work through every lunch unpaid and I stay late 30 minutes to an hour every day I am at work unpaid just to keep my head above water. She said you know you are not supposed to do that and it is against the fair labors act so this is your written warning to stop. I have no flexability in my schedule. If I am 7 minutes late because my kid can’t find a shoe or some of a million other reasons I have to put in that I am 15 minutes late on my time card. I am not a good mom, I have no one to ask for help to and we “make too much money” for any type of assistance. I find myself crying randomly all the time all throughout the day. I have insomnia and I am exhausted. Everyone (my sister, mother in law, sister in law, husband) is sick of hearing my sob story and feels so damn sort for themselves. I am going to try to retire on disability but I am so afraid of that battle and I feel too young to retire but something has to give or I am going to break!
I guess I am lucky that my husband is mostly understanding. And of course my friends on here. If it weren't for the people on this site, I don't know that I would have made it. There are times that my husband thinks that I am overtaking my medicines but doesn't realize that it is an after-affect of the stroke I had last year. We are going to a wedding next weekend and there are a couple of things that I need to do, but he keeps reminding me take it easy to that I am good for the trip. I suppose that it depends on his mood as much as mine. I just tell my husband that I cannot do....whatever...and when I can I do. My husband has helped by getting someone help around the house once a week. I am really appreciative as it allows me to do the other smaller things I can do,
Unfortunately, he is the only one. Last Thanksgiving, I had just been diagnosed and was in a BAD way. And my monster-in-law was worse than useless. I could barely stay awake yet she was insisting that I make all of the hors-devours (sp).
This was the first time I had seen her since we moved into our smaller house and she physically assaulted when she found out she couldn't live with us anymore. This, after 8 months of living with us and contributing absolutely nothing, including food, housework and basically not getting out of bed for as long as she was there. It reeked of body odor and mustiness.
On top on this my ex decided to wait until I was in the hospital to sue me for child support (which our divorce decree specifically states is not ordered as my ex made approximately 7 x's what I made) Not only that I flew him out every summer and Christmas and sent him home with a new wardrobe. I also loaned him money when he was furloughed (which is awesome now...karma and all that).
Because I couldn't fly, he continually went to my atty's office so that she dropped me 10 days before the case. He is intimidating and I have emails where she stated that she spoke with him outside of my presence.
Anyway, because he filed that I can't get help with filing for disability. I left my Toyota for my older son for which my ex was to pay me, instead he totaled it and not only didn't pay for it, but collected the insurance.
Sorry to vent but sometimes I get so upset that people don't understand how very difficult this disease can be, how debilitating.
Thanks for listening.
D
Hi D, I don’t have any wise words but I will be praying for you. I am glad that your husband is mostly understanding and helpful.
I did want to say that I like your spelling of hors doeuvres (I had to look that up) best- because I definitely DEVOUR them every time they are put in front of me. LOL