Saturday, March 10, 2012

Single by choice

When you were a child, or even an adolescent, didn't you dream of being married and living happily ever after?  I'm sure this wasn't everyone's dream but it was definitely mine.  I wanted a dozen children who would all be adopted, except maybe one.  I couldn't imagine a life without a husband and children and, most likely, a dog.  Yes, my family had a dog while I was growing up so I was not a fan of cats just yet but this would change by the mid 80's.

The dream I had seemed somewhat unlikely since I was terribly shy and painfully insecure in high school and didn't have my first date until I was 20 years old.  The following year came the MS diagnosis, which threw me into such a tailspin that nothing in my life seemed to make sense anymore.
The life that lay before me was not what I had envisioned for myself in the least so when I met a guy (9 years my junior) who seemed nice and said he loved me, I believed him and married him two months later.  I was 28 and he was 19.  I honestly thought our marriage would work because I thought I loved him but I also believe I was more in love with the idea of being in love and married, than with the reality of whom I had just wed.

The marriage was terrible and he became abusive but yet if I had to do it all over again, I would.  If it hadn't been for marrying him, I wouldn't have my three beautiful cats and they made every moment of pain I endured with him worthwhile.  So after a little less than two years, I divorced him and was free but yet still terribly unsure of myself and what the future would hold.  What would happen to me now?  A single woman with MS who had three cats and probably couldn't have children?  While married to him, we tried to get pregnant and I was put on fertility meds and nothing happened, so it was pretty clear that I would have difficulty in this area.  It was one more strike against me.

Less than a year after divorcing him, I remarried and it was a mistake from the start.  I was still desperately trying to hold on to someone, anyone, who would and could love me despite all the crap that went along with me.  He was not abusive but the marriage was less than adequate so two years later, I chose to divorce him and move on with my life.  This time, however, I didn't look outside my home for comfort.  For almost two years, I mostly stayed home with my three amazing little kitties and found peace and happiness within myself and learned to accept and even love myself in a way I never had before.
This year, I will celebrate 10 years of being happily divorced from hubby #2 and I am truly content with being single.  I no longer have the dream of needing to be married and I surely do NOT want children!  At 42 years of age, children are the last thing I need taking my last bit of energy to make it through the day.

Over these last ten years I have met a number of men, most of whom have been wonderful, yet I'm usually the one who choses to end the relationships.  I've come to realize that it's not that there's anything "wrong" with them or even with me, but I've become extremely comfortable with being single and I'm also tremendously stubborn, so needing to change the way I do things or feel towards anything feels pointless and rather annoying.  It could also be that I haven't met the "right" man to have in my life.. I'm not sure.  I'm also not convinced that man exists for me, but that's just how I see it.

Mine isn't a perfect life by any means, but I'm happy.  I have my own house that is handicap accessible in case my MS takes a turn for the worst, I'm still able to drive, my parents live nearby and our relationship is strong, I have a couple friends whom I know I can count on, my cats are in relatively good health and we love each other so much!  What more could I ask for at this point?  I know I am very loved and appreciated but yes, there are days when I wish I had a man by my side.. then I remember how easily annoyed I can become so that feeling quickly goes to the curb.  Being single is not a bad thing.  It gives me the freedom to do whatever I want, whenever I please!  And I see NOTHING wrong with that.

Friday, March 9, 2012

MS.. bladder and bowel issues

I hate having MS!  I had an appointment with my urologist today and it's almost entertaining when I can actually stump my own doctor, especially when he is a specialist.

For years now, I've had the most embarrassing problems to talk about.. bladder and bowel incontinence AND for other days on end, not being able to go at all (both bladder and bowel).  It's a horrible thing to endure and not something many can relate to since most with MS have one problem or the other, but rarely both.  Lucky me.. not!

My urologist prescribed a daily dose of Vesicare, which works in relaxing the bladder muscles to prevent urgent, frequent or uncontrolled urination, but it proved to be too much as it no longer allowed me to "go" at all, so he suggested I try taking it every other day, which helped immensely.  Then at the end of last year, my ankles began to swell and I was not able to go at all anymore, so I stopped taking Vesicare and called him immediately.  He then chose to prescribe 1 mg. Terazosin, which is usually used for men to treat enlarged prostate but since it also relaxes the muscles of the bladder and helps with bladder emptying, he felt it may help me, too.  Thank goodness he was right.  But of course, my MS wouldn't allow it to be the answer as it had to complicate my life once again.
How I feel some days!
After taking Terazosin for a couple months, I began having my old problem of not making it to the bathroom in time, so I stopped taking it and started on the Vesicare again.  Wouldn't you know it?  Now I couldn't go at all!  I was ready to tear my hair out but instead decided to try taking Terazosin in the evening, as was prescribed, and Vesicare every other day, and voila!  I was back to peeing like a normal person.  I wasn't sure it was the right thing to do but chose to continue on this path until I saw my urologist today, and even though he had never heard of anyone needing to do what I was doing, he was in agreement that it seemed like the answer to my bladder issues.  So I take one med to relax my bladder muscles and then another to stop them from being too active.  Yup, that about covers it!  I have MS because I'm a mess (a mess sounds like MS and it makes me giggle)!

As for the bowel issues, all I can say is UGH!  I've learned that taking the generic form of Colace (2 capsules daily) is the answer for me.  Without it, I would never go and even taking it, emptying isn't guaranteed.  I think people assume I'm constipated, which isn't my issue.  My brain can't "remember" where the muscles are located, so how can I go when I can't figure out how to push?  It's so damn frustrating and demeaning but this is what MS is and what it does and it's horrible beyond words.  So when anyone tells me that I look great and how wonderful it is that my MS hasn't affected me as much as it has others, I wish I could tell them to look inside my ASS and re-think that thought!  My problems are definitely more internal and although I am very grateful that I can walk and still drive most of the time, the things I deal with are not easy.
It's important to mention that I have had times when I haven't made it to the bathroom with both bowel and bladder incontinence.  It's beyond embarrassing and it always feels as if I lose a piece of myself when it happens.  I remember one Christmas evening I had been at my parents' house, where a group of friends were gathered, and I had driven home to feed my cats. As I was pulling into my driveway, my bowels chose to release.  I was completely soiled and humiliated and after taking a shower, called my mom and explained, through tears, that I wouldn't be able to return to their house that night.  The following day my wonderful dad came to my house, put a towel on the seat, sat down and drove my car to their house and used their wet-dry vacuum so my car would be clean again.  I was so ashamed but both my parents assured me that it was alright and they didn't mind helping me out, especially my dad in this instance.  I just wish I could say this was the last time something like that happened to me, but it would not be true.  Bowel and bladder incontinence happens to me a few times each year, although not usually in my car!  I'm thankful for the little things in life.. such as not soiling myself in my vehicle too often. :)

Thursday, March 8, 2012

I am an Atheist and of this, I am very proud

I am an Atheist and of this, I am very proud but I still I remember what it was like to believe in god and how it made me feel.  For me, it was a depressing thought that no matter what I did or did not do, I would never be quite good enough and had to constantly ask for forgiveness for being human, even though I was supposedly created in "his image."

I never felt comforted after going to confession (yes, I was raised Catholic) because sin was right around the corner and I would need to ask to be abstained of my actions once again by the next day, if not sooner.  Even my very thoughts were considered sinful, even though I didn't always do the things that had crossed my mind.  How can thinking be wrong when it is not put into action?  This was a concept that I could never grasp as I saw it as complete and utter madness, and obviously still do.
I felt as if I had to be sorry for being human and all this entailed, yet wasn't god the one who had made me the way I was and already knew what I would do before I even had the thought?  Believe me, even when I was a christian, I knew it was madness and struggled to hold on to what I professed was true.

I remember being at a retreat, back in 2003 or '04, where everyone at the table I was assigned to for the weekend kept insisting that I needed to "let go and let god" since it was clear that I was not able to do this.  Even back when I claimed to believe in christianity, I wasn't able to let go of my power of reason and let an invisible being "help" me as so many felt he could.

Which brings me to my next point which is also complete insanity.. prayer!  If this god watches over the entire world, why do people think he has time to listen to each and every person's petty little tiff every second of every day?  How selfish and egotistical!
Do christians REALLY believe their god has time for them?  In a world plagued with famine (which he could end at the snap of his fingers), hurricanes, tsunamis and earthquakes (again, he could stop or have PREVENTED these), why would he bother with your insignificant problems?  Even if you are praying for a loved one with cancer, a child who is near death or any other devastating personal health crisis.. how would this be important enough for your god to drop all he is doing to focus on YOU and YOUR life?  It was thoughts, such as these, that led me to trust myself and believe in my own strength and not lean on an invisible being for any kind of support.  I am stronger than that!  I do not have a gigantic fucking ego.  I am not self important.  I am simply me.  I do what I can to make my little corner of the world a better place by showing kindness, compassion, understanding, giving a helpful hand when possible and smiling because it could very well make someone's day a bit brighter.

I am an Atheist and of this, I am very proud.

Wednesday, March 7, 2012

My Bolivia, Part Two

Cochabamba is where my father was born, while my mother is from Oruro, the land of the Carnavál!  I have only visited Oruro once, when I was just 2½ years old, so as you can imagine the few memories I have of it are quite fuzzy.  But Cochabamba.. ahhhhhh, this is where a huge part of my heart lives to this very day.
Visiting Cochabamba in 1993 was the best thing I could have done (thanks, Mom and Dad!) and it gave me the chance to spend a lot of time with my two brothers in a different way than we did at home in the USA.  But more than just having a wonderful time, my MS went into remission the moment we arrived at Cochabamba's airport and this was a miracle in itself.
Picture I took of Cochabamba in June, 1993
My brothers and I stayed with our mom's mom, our Abuelita (grandma in Spanish), and that first evening my brothers had seen on television that there would be a "peña" the following day.  A peña is a sort of concert that features more than one Bolivian folkloric group and I must admit that I was not too excited at the idea of going but the truth is that it beat spending the evening at home with our Abuelita, so I agreed to go with them.. and it was an event that would change my life.  

Until that point I wasn't too keen on Bolivian music, mostly because the only time I had heard this type of music had been from hearing old records my parents had and they were not the best quality, so this is what I was expecting to hear.  Wow, was I ever wrong!  This peña featured four groups but the only one that stood out to me was the second one, Fortaleza.  I fell in love with the music in an instant and returned the following day, with my brothers, for the last day of the peña.  We were fortunate enough to meet that particular group, sat together and shared some drinks and laughs once their "set" was over and became very good friends.
Fortaleza performing, June 26, 1993
It's amazing to me how, in accepting and loving Bolivian music, my entire view of my culture changed and grew to heights I never imagined.  It was as if an entire new world opened up to me the moment I heard Fortaleza play their music, but to be honest it was one song in particular that did it for me and to this day, it remains my favorite song.

I'm not sure how to post a video to my blog, but I encourage everyone to go to youtube and watch this vid!  Yes, it's a very simple video but the song is incredibly beautiful as it's my absolute favorite and the one that began my love affair with Bolivian music. 

Aside from falling in love with an entire new genre of music, I began to see Bolivia in a whole new light.  The people now held a certain charm that they hadn't before and even the food tasted that much better.  My brothers and I were meeting new people, making friends and were accepted everywhere we went, which isn't always easy when you are taller, speak Spanish with a slight American or "gringo" accent and weigh a bit more, or at least I did and still do.

Then we were invited by one of the members of Fortaleza to the small village of Anzaldo, a few hours away, for a fiesta one weekend.  Neither of my brothers chose to go but I jumped at the chance to spend time with my new friends, assuming that the fiesta (which means party) was for one evening.  Little did I know it would last from Saturday morning all the way through Monday afternoon!  Had I known how long it would last I probably would not have gone, but I would have missed out on one of the most memorable weekends of my life.
A breakfast serenade with Boris, Nelson and Ramiro.  July 1993
I learned that commodities, such as more than one working toilet in an entire village, a bed and not eating for three days, aren't as crucial as one may think.  I was high on life and drank it in for all it was worth.  Being that I get sick to my stomach very easily, I chose to "fast" while there but didn't miss out on the enjoyment.  How could I not have fun?  I was surrounded by four of the six men from Fortaleza who made the trip, who insisted on serenading me each morning as we sat around the breakfast table and pretty much sang and played their music everywhere they went.  I tried "chicha" for the first and LAST time, although I'm sure some of you would have enjoyed it.  For me, just the thought that this alcoholic beverage was made of fermented corn and smelled worse than a pair of smelly gym socks was enough to turn me off from having more than just one sip, even though it is considered tremendously rude to refuse food or drink when someone offers it to you.  I tried it.. that was enough for me!

1993 was a fantastic time in Cochabamba for me.  It was spent mostly with friends I made while there but I did have time with family, too.  The aunts, uncles and countless cousins we have there bring a smile to my face just to remember the moments we were together.  But this vacation wasn't mine alone.. it was one I shared with my brothers but the next time I was there, in 1996, ahh, THAT one was all about me.
Younger brother Gonzalo, cousin Claudia and older brother Fernando.  June 1993

Tuesday, March 6, 2012

My Bolivia, Part One

Being of Bolivian heritage is a part of me that I love beyond words.  My brothers and I are first generation born in the USA and this is sometimes difficult for us.. or at least it is for me.
Our beautiful Bolivian flag
Spanish was my first language but I was soon bilingual, learning English mostly from watching Sesame Street and Electric Company.  From a very young age, we were taught that Spanish was spoken in the house and English was for when we went to school and were with friends we had made.  It's wonderful how, even as a small child, we knew which of our parents' friends spoke English or Spanish which is why I encourage people who know more than one language to teach them to their children from the start.

When I was eight years old, my family (including our dog, Tootsie) moved to Cochabamba, Bolivia.  As far as we knew, it would be a permanent move and it was a very scary, yet wonderful, experience.  My older brother was 10 and the younger one was 4 at that time.  For the first time, we got to meet family members we had never known and it was great!  I had no idea what it was like to have such a huge family, but now we were surrounded by loved ones and it was truly amazing.  But we soon learned that being bilingual and loving some Bolivian food was completely different from living there, adapting to different customs and going to school in a language that wasn't English.  I had never read too much in Spanish, nor had I ever tried to write in my first language, so it was a bit of an adjustment.  After some tutoring, we were ready to dive into going to school and test out a new world.  Luckily, my brothers and I adapted rather quickly to school in Spanish and our grades were really quite good.  I can still out-spell many who write in Spanish all the time and I'm kind of proud of this. (giggle!)

Being that I was a child, I don't even know all the details as to why life didn't work out in Cochabamba for my parents, but a couple years later, in 1979, we were on our way back to the States.  I have to admit that readjusting to life in the USA proved to be more difficult than I could have ever imagined.  I felt as if I no longer fit in and/or that no one understood who I was or what I had experienced while in Bolivia.. and those two years HAD changed me in more ways than I could comprehend.

I went back to Bolivia in 1989 to spend time with my grandparents (Mom's parents) and with the rest of my family.  Mom's youngest sister and her daughter lived nearby, so I spent a lot of time with them and had the chance to get reacquainted  on a different level.  I was 20 years old and had been suffering from intense depression, which is what prompted my visit.  I needed to get away from the life I knew and it was the best place I could think of that would help me find my way back into myself.  I don't think it was until I was invited to stay with my cousin Patty and her family (husband and two children) that I began to smile again.  You see, they did not have much when it came to possessions, but they had a deep sense of family, acceptance and love that I had never felt until I stayed with them.  Patty and I would talk for hours on end (playing cards, as we Bolivians do!) and she helped me find a piece of myself I had lost in my depression and for this I am forever thankful.  We were always surrounded by family members coming to visit or we went as a family to typical Bolivian restaurants and ate the most delicious food for just pennies.  It was basically every day life and it was just what I needed.
This picture reminds me of the street Patty and her family used to live on.
In 1993, one of the worst years EVER for me with my MS, my two brothers and I went to Bolivia as a gift from our parents.  I was walking with my quad cane and wasn't able to be on my feet for too long, so I wasn't quite sure if this trip was a good idea or not, but I was willing to find out!
La Paz at night with the majestic Illimani overlooking the city.
My brothers, Fernando and Gonzalo, and I spent the first week of our vacation in La Paz with my mom's younger brother and his family.  The altitude of La Paz is insane when being accustomed to life at sea level and due to the lack of oxygen, I had trouble lighting a cigarette but that didn't stop me from trying!  While there, we made a day trip to see ancient ruins of our Incan ancestors at Tiwanacu.  It was a fascinating day and only wish I would have been able to move around better, but I enjoyed it nonetheless.
A portion of Tiwanacu

La Puerta del Sol (Door of the Sun.. or perhaps it's called the Gate of the Sun?)
La Puerta de la Luna (Gate of the Moon)
As much as my brothers and I enjoyed our time in La Paz, we were anxious to return to Cochabamba, where we had lived as children.  It wasn't until we were in Cochabamba that I began to experience Bolivia on a different level and truly began to appreciate it for what it is and rejoice in its simplicity and awesome beauty.  And this is where I will pick up the story tomorrow!

Monday, March 5, 2012

MS and Tysabri.. thoughts and questions to myself

My fourth Tysabri infusion is scheduled for Wednesday afternoon.  I keep asking myself if I've seen any benefits or difference in my MS since I began this treatment in December and the truth is that I have not.  I really hadn't considered the "feeling better while on Tysabri" possibility until I had posted the question on Facebook, and 8 out of 10 responses were ecstatic at how much better they felt almost immediately.  Nah, that's not me at all and I was hoping it would be!

As those of us with MS know, before beginning Tysabri we need to be checked for the JC virus (John Cunningham virus or JCV).  Testing positive for JCV increases the chance of getting progressive multifocal leukoencephalopathy (PML), a rare brain infection that usually causes death or severe disability.  PML tends to happen in people with weakened immune systems, which is exactly what MS does to us.  I DID test positive for the JC virus and after discussing the risks and possible benefits with my neurologist, chose to begin this therapy.  People on Tysabri are closely monitored through MRI's and blood work to make sure no problems arise, as he is doing with me.

Even after having a few infusions, I'm still on the fence as to whether or not to continue with Tysabri.  As I've mentioned a few times before, I've had MS for 21 years and am still ambulatory, live on my own, drive a car, do some light housework (I have a very nice lady and friend who comes to my home twice per week to help me with most of it) and I am afraid to rock the boat with these infusions.  I have been mostly "winging it" with my MS for years and it seems to have worked for me.. so what am I doing now?  What if putting this medicine, which I'm sure is full of all kinds of poisons, in my body will actually make my MS worse than it was?  The only reason I chose to go on Tysabri was to stop the pain I live with day in and day out.  Some days, the pain is so severe that all I can do is lay on the sofa or bed and cry as my body shakes in spasm after spasm.  This was no way to live so I did the only thing I could think of, which was start these infusions.

During the last year and a half, I have been going to a chiropractor who adjusts my hips, pelvis, shoulders and back VERY gently, as must be done with those of us with multiple sclerosis.  The difference in me, since going to the chiropractor, has been astounding.  For a time I wasn't able to stand straight up, laying down brought pain to my hips and sitting down caused intense pain in my derriere, but it turns out that the pain was coming from my pelvis (which is somewhat tilted in a position that makes my life hell).. so I was fucked in every position.. and not in the good way! lol  And then the weather would change and the pain would kick in again, even with twice weekly adjustments.  I was taught a few exercises by a physical therapist and do them almost daily, which does help, but most of the pain is still present.  I'm also medicated to a small extent, which makes me "think" I feel better, but come on.. who am I kidding?  I've chosen to cut my anti-spasm/pain pills in half because I'd rather feel some pain and know what is happening in my body than band-aid the problem with drugs.  But the question remains in my mind.. should I stick with Tysabri and all of its side effects or do as I did for so many years prior which was live my life without too many MS meds?
I've already accepted that I have MS, which becomes more difficult each time new lesions bring more symptoms and I have to re-accept it again and again. Yet I wonder if I'm doing the right thing in taking Tysabri.  I want to change how the MS will affect my life in the long run but maybe this new medication will "piss off" my MS!  What if I'm doing the wrong thing and my disease will progress differently because I was messing with it so much?  UGH!  What to do?!  One decision I have made, however, is to continue with the Tysabri until I have new MRI's taken and I get my labs done.  I guess they will tell the tale of what is happening inside my body and I can make a more informed decision as to keep taking it or allowing my MS to do as it pleases.  I just can't imagine living with more pain than I've already experienced....

Sunday, March 4, 2012

What it FEELS like to have MS

I read a post on a photograph on I Hate Multiple sclerosis last evening that left me thinking all night long.  Describing what MS feels like is basically impossible, just as I cannot fully comprehend what it is like to have cystic fibrosis, muscular dystrophy, rheumatoid arthritis, cancer, fibromyalgia or a number of other conditions which do not afflict me.

So here is the story of a woman with MS, trying to explain it to a friend.  It may seem long but it is well worth the read.. and do not be surprised if tears start rolling down your cheeks.  It happened to me, too.

"But You Don't Look Sick"....

My best friend and I were in a diner talking.  As usual, it was very late and we were eating French Fries with gravy.  Like normal girls our age, we spend 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 vitamins with a snack as I usually did, she watched me this time with a kind of start, 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, I assumed she knew all there was to know about MS.

She had come to the doctors with me, seen me getting MRI's, she saw me stumble on sidewalks and have to sit down at a concert.  She carried me out when I couldn't walk another step, what else was there to know?

I started to ramble on about the vitamins and the changes but she didn't seem satisfied with my answers.  I was a little surprised as being my roommate 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 healthy person can truly understand.  She asked what it felt like, not physically, but what it felt like to me... having MS.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least a stall.  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 affected, and give the emotions a person with MS goes through every day with clarity?

I could have given up and 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 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 together as I shoved them into her hands.  I explained that the difference between having MS and being healthy is having to make choices, or to think consciously about things when the rest of the world doesn't have to.  The healthy have the luxury of choice, a gift most people take for granted.

Most people start the day with an 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 their actions will have.  So for my explanation, I used spoons to convey this point.  I wanted something for her to actually hold, for me to take away, since most people who get MS feel the "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, 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.  Little did she know how serious the game would become.

I asked her to count the spoons.  She asked why, and I explained that the spoons represented units of energy and when you are healthy you expect to have a never-ending supply of spoons.  But when you have MS and you have to plan your day, you need to know exactly how many spoons you are starting with.  It doesn't guarantee 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 the game 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 MS.

I asked her to list off her day, including the most simple tasks.  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 your eyes open and then realize you are late.  You didn't sleep well the night before.  You have to crawl out of bed, and you have to make yourself something to eat before you do anything else because you have to take your vitamins and have energy for the day and if not you might as well give up on spoons for the whole day!"  I quickly took away a spoon and she realized she hadn't even gotten dressed yet.

Showering cost her another spoon, just washing her hair and shaving her legs.  Reaching too high or low, or having the shower water too hot and choosing to blow dry her hair would have cost more than a spoon but I didn't want to scare her too much in the beginning.

Getting dressed is worth another spoon.  I stopped her and broke down every task to show her how every detail needs to be thought about.  You have to see what clothes you can physically put on, what shoes are going to be appropriate for the days walking requirements, if pain or spasticity is a problem, buttons are out.  If I have bruising from my medication, long sleeves might be in order.  You cannot simply throw clothes on when you have MS... it's just not that easy.

I think she started to understand when she theoretically didn't even get to work yet 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 has MS lives with the looming thought that tomorrow may be the day that a fever comes, or an infection, or any number of things that could prove disabling.  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 her to be realistic, and unfortunately being prepared for the worst is part of the real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost a spoon, as well as standing on a train, or even typing on her computer for too long.  She was forced to make choices and to 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 only had two spoons left.  If she cooked, she wouldn't have enough energy to clean the pots.

If she went out to dinner, she might be too tired to drive home safely without having blurred vision or forgetting to turn her lights on.  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 maybe finally 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 answered that some days were worse than others, some days I have more spoons than most.  But I can never make it go away and I can't ever for a minute forget about it, I always have to think about it.  I handed her a spoon I had been holding on 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."

It's hard, the hardest thing I ever had to learn is to slow down, and not to do everything.  I fight this every 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 the 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 and my own body before I can attack any one 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 having a chronic illness and being healthy.  It is the beautiful ability to not think and just do.  I miss that freedom.  I miss never having to count my spoons.

After we were emotional and talked about this for a 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 night, or when I never seem to make it to her house and she always has to drive to mine.  I gave her a hug and we walked out of the diner.  I had 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 every day?  I don't have room to waste them, and I choose 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 become 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 look at their own life a little differently.  I think it isn't good for understanding MS, 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, every time I do anything.  It has become an inside joke.  I have become famous for saying to people joking that they should feel special when I spend time with them, because they have one of my spoons.

Written by Angie Barrett and posted on I Hate Multiple sclerosis, January 6, 2012