Denial vs Acceptance

[LaurieB]

Hi to all. I've been dealing with this MonSter disease for years. I'm just beginning to feel like 'throwing in the towel'.
I think I have stayed in denial, rather than working through each symptom with acceptance.
I've always tried not to think about all of the changes in my body. I don't want to think about not being able to do the things I used to love to do. (traveling for work, riding, working outdoors, volunteering, etc.)

Does anyone have some advice? How do you accept and still enjoy life? Did you go through denial, to no avail and how did you get past it.
I'm so weary with the many limitations I now have. I was always active (trained horses for years), my mind was sharp and I loved life.

I cared for and lost both of my parents in the past 2 long years and now I'm just feeling 'done in'.

I'm hoping and praying that reaching out here, to all of you with MS, will help me to find a place where I 'fit' and where I can also listen and add something positive for others.

I hope those of you who read this post are feeling well and happy today and thank you, in advance, for any input.

[headrift]

There have been a few things in the past that I had to admit to myself that I won't be able to do anymore. My ability to backpack has gone from "maybe next summer" to "maybe just a quick hike" down to "I can still walk down to the corner store". Right now, I can't even take the garbage to the dumpster.

This was not an easy progression to make over the past decade, especially for a frequently suicidal person.

The thing that turned me around is not so much the usual "people would be sad" but that I am still wanted. Not needed and not desired, but there are people and a few pets that want me to be here when they wake up or go to sleep. And I want to be here for them.

So that's where I keep finding value in myself. I'm willing to bet that there are a few that value your presence as well.

[LaurieB]

There have been a few things in the past that I had to admit to myself that I won't be able to do anymore. My ability to backpack has gone from "maybe next summer" to "maybe just a quick hike" down to "I can still walk down to the corner store". Right now, I can't even take the garbage to the dumpster.

This was not an easy progression to make over the past decade, especially for a frequently suicidal person.

The thing that turned me around is not so much the usual "people would be sad" but that I am still wanted. Not needed and not desired, but there are people and a few pets that want me to be here when they wake up or go to sleep. And I want to be here for them.

So that's where I keep finding value in myself. I'm willing to bet that there are a few that value your presence as well.

Headrift....Thank you so much for responding to my post. You certainly understand how difficult it is to grasp this ever changing and more disabling illness. I'm so sorry you too have had to come to terms with our reality...the way you explained the changes for you over the past decade reminds me so much of what I am trying to accept.

I appreciate your words about people wanting you to be here. The way you worded this makes so much sense and it has helped me a lot today. You are so right- I do, indeed, have loved ones who want me here and still value me as part of their world.

Thank you again and I sincerely hope you have a decent or much better than decent day today...

[zilphia01]

I feel your pain

I truly do feel your pain. I am a 54 yo teacher with 2 grown children. I have to WORK HARD to continue to realize that what was, is not what is.

I have always been a positive person. I have to remind myself of that.

I have always been a person who could think. I have to tell myself "YOU PASSED ORGANIC CHEMISTRY" (hardest class I ever took)

I have always had enough energy to do what I wanted. I have to remind myself that I cannot, but there are other things to do that won't take as much energy.

I am trying to surround myself with those other activities. I have started painting and taking oil classes. Love those.

I have started making barn quilts and sewing for others and donating the $$ to needy children (hate the thought of young kids being hungry).

I have started volunteering to tutor college kids who are struggling with science classes I can help them with.

Even with that said there are days I am just ANGRY and ticked off that what was, is no longer. I KNOW there are people who are worse off. I KNOW it could be worse for me. I KNOW I KNOW I KNOW....... those are the hardest days when I have to talk firmly to myself. Guess I am lucky to be around kids and other adults who can "buck me up" when I am really down.

Good luck.... and I hope you can find a path that leads to joy and happiness.

karen

[palmtree]

With MS I don't think there is anything wrong with denial. If denial can help you move forward each day. Denial and not taking a DMT, I don't know. I would say, the best approach would be, 'the worst case won't happen to me' but take your meds.

If a flare comes you will no longer be in denial. So why rush it?

[headrift]

Yeah, I think denial can be an alright thing, if it's wrapped with a good amount of resolve to not accept changes. I had to take hits to my walking ability as they came. If I had accepted that I wouldn't be able to take the garbage out anymore at the same time I accepted that there would be no more hikes, it would have been crushing. I let it go in a number of moments where I had to admit to myself (and others, don't forget them) that I couldn't make it any farther. Small steps, not long jumps.

[Mamabug]

You don't say how long you've had MS.

For me, with any big loss (my mom's death, too early, from cancer; beginning of MS; loss of more than one career, due to MS), I found that it took me about three years to get through the hardest part of the grief process. But, the process never really ends.

Don't rush the steps. And don't necessarily expect that you'll go through them the same way as others did.

My advice would be to continue to move forward, even if it's in baby steps, during the process. Decide who the "new" you will be, with the changes that you'll need to make to your life because of your MS. Be realistic enough to understand your current limits, but don't allow MS to limit what it doesn't need to.

Choose to participate in things that bring you joy in life. Choose to say "yes" to those.

Choose to say "no" to things that add stress to your life. Recognize that, although MS takes away some choices, it still leaves you with different options than you had before.

[Tia1]

I'm right there with you. I'm slowly watching my life change with the things that I can do. It kinda sneaks up on you doesn't it?

I can still do the same things but not as well, and it takes me so much longer. I'm just getting that this might be permanent.

I hope that you find joy in whatever you decide to do.

[gwynnf]

over the last 20+ years I have gone through relief (I'm not going to die) to anger (why me?) to disbelief (what did I do wrong?) to denial (not me!) to acceptance...my reality.

In the last 3 years I have lost most of my mobility, 2 jobs, my marriage, my house and everything I had including my pets. My ex had me brainwashed that I could never survive on my own. He actually walked out with a person I brought into the house to help me because of the MS. I did survive for a year before moving back to where I grew up and I had more family.

I am now fighting the fight to regain the physical strength I've lost. With many road blocks in the way this past year, I am still pushing through.

You will have great day, good days and bad days (I call these my quarterly meltdowns with a thrown in anxiety and panic attack).

I have a wonderful support system and am in a wonderful new relationship.

Best wishes to you

[poppydarling]

I think I have stayed in denial, rather than working through each symptom with acceptance.
I've always tried not to think about all of the changes in my body. I don't want to think about not being able to do the things I used to love to do. (traveling for work, riding, working outdoors, volunteering, etc.)

Does anyone have some advice? How do you accept and still enjoy life? Did you go through denial, to no avail and how did you get past it.

Luckily, denial isn't illegal because I would've been locked up long ago I think this disease takes you through stages and losses that you can enter and leave and then enter again frequently.

Just last night, I had a mini meltdown as I was trying to bake, something I previously enjoyed and found very easy to do. At every mile marker and passage — not being able to walk the dogs every day, go outside to work or meet my friends, or cook or bake like I used to etc. I allow the feelings to well up and feel the grief all over again. I think this is about making friends with grief without letting it overwhelm you.

Personally, I use mindfulness techniques, meditation, and comforting self-care to get through those moments. I think learning to accept each little loss as it comes along helps them to not build up to a bunch of feelings that become unmanageable. And I think training yourself to find new ways to do the things you enjoyed — or finding new gentler, easier things — is very important as well.

For instance, there is a nonprofit in my town that invites children with cancer out to their stables for a gentle ride. When I felt stronger, I volunteered to groom the horses and help the children as they rode around the ring. If you have a camp chair or can stand for a bit, a nonprofit like that would so appreciate your help in the ring. Maybe there's something like that in your area?

[J-Bo]

To me, denial is believing something that isn't true. I prefer avoidance, like when I start thinking about what I've lost, I just try to switch to thinking about something else. It doesn't always work, but sometimes it gets me through. I guess denial and avoidance are sort of related, though.

[LaurieB]

Thanks Everyone!

I haven't been online much lately and I feel so blessed to see everyone's responses to this thread. I'm so sorry everyone here deals with all of the things we have to cope with. Hearing from you all, who really understand, does bring some comfort and I thank you for your input, kind words, encouragement and honesty.

As I was reading through this thread, my heart went out to each and every one of you.
Lately, I've just been so angry about it. Just darned mad because I feel like I have to rate everything on my list, only to get one or two things done. There's so much in me that wants to be doing...

I'm going to try to pick one thing per day that feels like a productive step and consider it success.
I'm going to do my best to not judge myself.
I'm going to root for all of us each day, even if I'm not posting...I'll be rooting for you!

[Mamabug]

The Spoon Theory

...
As I was reading through this thread, my heart went out to each and every one of you.
Lately, I've just been so angry about it. Just darned mad because I feel like I have to rate everything on my list, only to get one or two things done. There's so much in me that wants to be doing...

As I read this, Laurie, I thought of the Spoon Theory. I've posted it below, so you can read it.

...
I'm going to try to pick one thing per day that feels like a productive step and consider it success.
I'm going to do my best to not judge myself.
I'm going to root for all of us each day, even if I'm not posting...I'll be rooting for you!

Wow. We should all set these as our goals.

----------------------------------------------------------------------------------------------------------------

The Spoon Theory http://www.butyoudontlooksick.com/tc...at-150x150.png

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers.

I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words.

How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.At that moment, the spoon theory was born.

I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions.

So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.”

I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons.

I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them.

I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely.

Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit.

She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner.

I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.© Christine Miserandino

[LaurieB]

As I read this, Laurie, I thought of the Sppon Theory. I've posted it below, so you can read it.



Wow. We should all set these as our goals.

The Spoon Theory

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.http://www.butyoudontlooksick.com/tc...at-150x150.png
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.© Christine Miserandino

Thank you, Mamabug.

I remember reading the Spoon Theory quite a time ago.
Re reading it now was good for me. It is helping me to pick my one productive, for sure thing today. So far, I've been responding to calls and texts about a car I listed online, for sale, yesterday.
I'm not as on top of it as I want to be so getting through the next couple of hours on the phone will be my spoons for the day.

Does that count? (I do get wiped out talking or texting on the phone)My brain wears out so quickly! Luckily, a friend is actually showing the car for me. I feel like if I had to do the correspondence and make myself presentable, I'd be showing the car in my p.j.'s and letting people test drive while I would be asleep in the passenger seat.

[Mamabug]

Sure it counts. We need to be our own best advocates and figure out what we can and can't do.