Wednesday, May 30, 2012

World MS Day- You look so good

Today is World MS day! One of the features of the site is 1,000 faces of MS. We look so good- if you have MS you understand the meaning in that joke. If you don't let me explain. We are so often told, but you don't look sick or you look so good. That it has become a running joke.  Yes we suffer from a invisible disease, if only you could see pictures of our brains. There are many other invisible disease's so please don't judge others. I look perfectly healthy from the outside, but fatigue is the symptom that I battle on a daily basis and the one that frustrates me the most. Christine Miserandino explains it wonderfully in her essay The Spoon Theory.

One of the most frustrating things for me is heat exasperates the fatigue. Therefore I have a handicap parking permit. Many times I have been harassed or give dirty looks when I use my permit. I normally only use it when I need to go to the grocery store or take my daughters to the mall. I know that by the time I walk across the parking lot, do my shopping and return to the car I will be exhausted and my brain will feel like mush. With out the permit I would not be able to accomplish the task. I know many people abuse and over use the handicap parking. Most don't because we have invisible disease and feel embarrassed to admit they need the extra help. So you when you see those of us that look so good using those handicap spots, please don't jump to conclusions.

I have copied and pasted the essay to the end of my post. May your day be blessed and thanks for taking the time to read all of this.
Love Always

The Spoon Theory

by Christine Miserandino

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.
Cartoon image of Christine Miserandino holding a spoon
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

Friday, May 25, 2012

Memorial Day Remembered

I wanted to remind everyone to take a few moments this long holiday weekend to remember what we are celebrating. I know we all love the official start of summer, all of the barbeque's, trips to pool, and camping trips. All wonderful memories being made with our families.

I want to thank all of the families that have made the ultimate sacrifice to our country. Thank you for allowing our families to continue building memories. I thank you for continuing to move on after such a loss and building memories with the family that you still continue on with and treasuring the memories of those lost. 

My husband spent 22 years in the Air Force.  We traveled the world and have wonderful memories of those he served with, I count them as extended family.  Today many soldier's are participating in the flags in at Arlington National Cemetery. They are being reminded of what their service to our country could require of them. My family has a long history of military service. Most came home, a few did not. Many came home with memories that still haunt their dreams.

Thank you to all who serve and protect our rights even when you don't agree with the politics that put you in harms way.


Friday, May 18, 2012

First week end with our Grandson

Well I am feeling better and it is a good thing! We have a very busy weekend, Sunday is my son-in-law's birthday and my daughter took him to New York for the weekend. That means we have are grandson and 2 grandpuppies for the weekend. They left on Thursday evening and will return on Saturday. We will meet them at Dave and Busters for a celebration. Shh! It is a surprise.  I am enjoying my time with Enzo and the dogs, but this house is not big enough for 2 extra dogs, we already have 2 of our own and they aren't little ones.  Sunday is one of our friends daughters 1st Birthday! This a great celebration since she was born 6 weeks premature.  

With Enzo crawling now he seems to be into everything! I think his favorite toy is the dogs water bowl- lol. We have one of those water bowls with the big bottle attached and he loves to stand up holding on to the bottle dipping his toes into the water or splashing his fingers in it. I have nightmares of knocking over the water bottle and having a gallon of water to clean up before the wood floors are damaged.  Have a great weekend and enjoy some time with those you love. Remember family is not always the ones you are related to by blood. I need to run remove the baby from the water bowl.

Friday, May 4, 2012

MIA due to MS

Sorry Dear Readers,

I have not blogged in over a week. I have been sick with a spring cold and those who also have a auto immune disease know that those colds hit us harder than the average person.  I started noticing it before I was diagnosed with Multiple Sclerosis (MS) but once I was diagnosed I at least knew I wasn't just a wimp. The best way I can explain it is when you have an auto immune disease a cold makes you feel like you have the flu. The flu feels like pneumonia, etc. With MS you also have a mild increase of your typical symptoms. They call it a pseudo-exacerbation, a exacerbation is a flair of your MS symptoms and are often treated with round of steroids to suppress the immune system and limit damage done to the nervous system. Well a pseudo-exacerbation is symptoms being increased due to your immune system flaring up to fight an illness. The doctors don't want to use steroids to suppress your immune system because you need it to fight the illness and the possible risk of over steroid use, plus the symptoms go away when your illness does as well. 

Sorry if all of this is a little boring. I want to share the MS experience with my readers so we can increase awareness. I don't like to complain about my MS either because we all have a cross to bear in life and I don't want to be a burden. This disease has a risk of making me a bit of a burden and high maintenance, but I don't want it to be so as long as I have a choice, so I make a choice to be as active and low maintenance as I can. I do have symptoms each and everyday- I can no longer work full time in the classroom, but I am not able to collect Social Security. I have much in my life to be thankful for so that is where I try to focus my energy.

Thank you for taking the time to read my ramblings. Take time to live to the fullest and bear whatever burden you may have with dignity.
Love always