yep yep, nothing unusual there; sounds quite a common thread.

just wait until you feel good one day, they'll start treating you as if MS were like the FLU and GONE.

Yeah,...all the time. Everything gets looked at, my diet, what I am doing and how I am doing it. I am not eating enough, I am eating too much, I am not doing this enough, I may not be doing that enough,....the beat goes on.

Now, the get togethers were more of a problem with past boyfriends. I was tired, and the common thread was that they had perceived my fatigue as a lack of interest in them or wanting to be with them. And when I was tired, and told them I was tired and WHY...I still got, well you dont seem excited or happy about it.

Remedies? I have no clue. Still working with it myself.

Good post. Thanks! Hugs Ellen

I found this on a M.S. website, it was written by a young single woman with no children. This is the best way I have ever heard of anyone explaining living day to day with MS.

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 MS 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 MS. She came to doctors with me and she saw me walk with a cane. 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 MS. 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 dont try to explain this, how could I ever expect her to understand. If I cant 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 MS. 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 doesnt 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 MS, being in control.

She grabbed the spoons with excitement. She didnt 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, which you wont know until you wake up. To answer your question well start your day with twelve. It doesnt guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out the12 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. Ive wanted more "spoons" for years and havent 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 MS.

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 dont just get up. You have to crack open your eyes, and then realize you are late. You didnt 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 dont, you can't take your medicine, and if you dont 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 hasnt even gotten dressed yet. Showering cost her a 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 didnt 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 my shoulders and back hurt I wont be able to put on a bra. 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 didnt 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 tomorrows "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 virus comes, or a treatment reaction, 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 didnt 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 wouldnt 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 didnt even bother to add into this game, that she was so dizzy, 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 cant do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didnt 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 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 cant 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 that 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, Dont 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 dont 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 isnt just good for understanding MS, but anyone dealing with any disability or illness. Hopefully, they dont 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".

the spoon theory was given to me by someone on this sight.i hope it helps

OH YES, HERE IS HOW I EXPLAN IT 2 THEM. MY MIND CAN RUN AND WALK AS FAST AS IT WANTS 2 BUT MY LEGS CAN'T. MY MIND CAN LIFT PULL AND PUSH LITE OR HEAVEY THINGS BUT MY HANDS AND ARMS CAN'T. MY MIND CAN SPEAK WHEN EVER IT WANTS 2 SAY WHAT EVER IT WANTS 2 BUT MY MOUTH CAN'T. MY MIND CAN SEE IMAGES BUT AT TIMES MY EYES CAN'T. MY MIND IS HUNGRY BUT MY STOMACH TELLS ME I AM FULL. MY MIND CAN DO AND TELL ME ALOT OF THINGS BUT AT TIMES MY MIND CAN'T REMEMBER WHO U R OR WHAT THINGS IN MY EVERYDAY LIFE R OR WHAT I DID OR ATE LAST NITE..

Hi, I tell my sister I am going to buy 50lb or 100lb weights and tie them to her legs/arms. She says I won't be able to walk or rise arms. I am like "GET IT NOW?"

It has taken about six years to get my Mom to "get it". I had stopped trying to explain it to her, since the sypmtoms vary so much I can see how it could sound like I was telling tales. My husband lives with me, he undertsands, so does my sister. She sometimes gives me trouble, only because she misses the way our relationship used to be...usually she is my little sweetie. I just learned, over time to ignore what others would say...either they get it or not...and hope that they never have to deal with people as insensitive a they are.-Jen

I have found that the best way to deal with family like yours and mine is to convince them that it is A GREAT IDEA FOR DAD TO TAKE THAT JOB IN THE MTNS. OF NC!!!!
At least that's how I finally found peace!
Its your disease...not theirs...stop picking up the phone...ms is hard enough to deal with...you sure as hell don't need "their help"
and while I do think that diet and exercise does help us...it is not a CURE!
Wishes for a new family for you...
emmie

Do you think that our Mothers find it easier to confront our disease by not acknowledging it? It may be too painful for them as they can't 'kiss it and make it better'. Diet and exercise--all should follow these guidelines--but I think your mom is just having a really hard time with acceptance. Just another point of view. I frequently try to look at things from the other person's pt. of view as it helps snuff out anger. The weird thing is, I can hear my own mother saying the exact same thing--with love and concern. The sister--well, I don't think the same thing applies--she obviously doesn't understand what the side effects of injections for MS are! When you really think about it, even though your family doesn't understand MS, aren't you greatful, at the same time, that they don't have MS?

Just my food for thought...

Michelle

I think anyone who isn't living your life can't possibly understand. I've tried the `giving them information' route and it didn't help a bit. My mother's one of those `bury your head in the sand n it'll all go away' sorts. She likes to think if she doesn't talk about it - it's not really there/happening.
Unfortunately there really isn't anything to do when family members just refuse to understand.
Hugs Dee
O n TW5 - loved the post x

yeah, because I am so young, my family thinks this will just go away, and they also think that I'm making up my symptoms. I want to yell at them sometimes because they just do not understand what I am going through. I hate whe nthey tell me: "You just took your medicine, you shouldn't be in so much pain." I don't know what to do about this, so, I just ignore it, and do the best I can not to complain about any type of pain in front of my family.-Lisa

Yeah, it's tough. I have to say my family accepts me and helps if i ask. I developed new friends when i moved here 4 years ago. They accept me and help. They didn't know me before. It's the way i am.
Older friends are the issue. Some are the ones that don't accept it.Accepting me is their job not mine.
I like my new group of friends. They like me. It's me as me.
You are still that person as before just disabled. MS is real.

yes Yes Yes Yes ....All MS and no play makes Bonster a dull girl..

heh heh heh... my father knows what pain is about,,, he offered to buy my ounce for the month... i have no issues with him...grin...rofl...

certain friends like to pretend it does not exist... we get along great that way...lol...
other family members dont acknowledge it... until they have to... like when you show up for dinner with a walker.....lmao... i so love the shock value...heh heh heh...
yep i love playing with their heads...grin..

maggie... screw them... dont try to get through to them... if they dont get it by now ,,, try printing out the spoon theroy on here and giving it to them to read.. if that does not work... leave it alone... they will adjust in their own sweet time... you have enough on your plate to worry about..
let them worry about themselves... when you have to cancel something because you are not feeling up to it and a family member says something to you... tell them to suck it up and put on their big boy pants and then gently hang up the phone...

hugs
heather

If someone can tell me how to attach a file in these replies, I'll post a letter that someone else put on this website about "Understanding MS". I emailed it out to a number of friends and relatives and it really opened their eyes.