Tuesday, May 31, 2011

The Spoon Theory written by Christine Miserandino

The story below is great for anyone to use with any type of chronic illness or condition that prevents them from living their life like others around them.  I don't normally cry when I read things or watch things, but this brought tears to my eyes.  It is about a person with Lupus, but it is so much and close to what we go through with Fibromyalgia.  I also see it relating to my depression and anxiety as well.  Please read, and take the idea to show others how we struggle daily whether a good or bad day.

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

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

Monday, May 2, 2011

Fibromyalgia Awareness Day

Fibromyalgia Awareness Day
May 12, 2011
National Fibromyalgia Awareness Day aims to increase awareness of FM and provide support to those coping with the illness.
May 12 is National Fibromyalgia Awareness Day, a time to increase awareness of this chronic and life-altering disorder by educating the general public, healthcare professionals, government officials, and legislative bodies.

About Fibromyalgia: Fibromyalgia syndrome affects the muscles and soft tissue. Fibromyalgia symptoms include chronic pain in the muscles, fatigue, sleep problems, and painful tender points or trigger points at certain parts of the body. Fibromyalgia pain and other symptoms can be sometimes be relieved or eased through medications, lifestyle changes, stress management, and other fibromyalgia treatment.

Source:  Bloggers Unite

Sunday, May 1, 2011

An Easter We Will Remember-Roll Over Crash

Unfortunately, we learned how blessed we are on Easter through a roll over accident.  It was a freak accident.  We ran to Menard's to replace some piping to the sewer to the master bathroom.  After we left we went through McDonald's drive thru.  We had not eaten and were going to Meijer to get Easter dinner since we had made no plans and had nothing at home.

As we were getting on to the highway on US127 in Michigan Center towards Jackson, MI my husband Ed took a bite of a french fry.  He coughed which make the fry go down the wrong pipe.  He was choking, turned blue and passed out almost immediately.  Meantime I am screaming "are you OK" and trying to reach the steering wheel with no luck.  We were off the Highway, hitting a sign and rolling all in the blink of an eye.

Once we stopped I made sure Ed was breathing, which thank goodness he was, but saw blood running down his head.  I quickly checked on all 3 boys.  They seemed fine though scared.  I am trying to keep it together not to scare the boys more.  I start searching for my phone to call 911. 

Immediately some very great people stopped and let us know they called for help and were checking to see what kind of help we need and they were great at keeping me calm.  First responders were there in a few minutes.  Much quicker then I would have thought, though I had no concept of time.  All I can say is thank you to them and I know that is not enough.

The EMS started assessing the situation and us.  My concern was Ed until they were going over things about the boys and I noticed Jacob, our middle son, lips were blue.  They got the 3 boys out immediately and put them in an ambulance and took them to Allegiance Hospital in Jackson.  I was panicked a bit as I was away from my babies, my husband was hurt, and I at this point still had not thought of myself.

Jaws of life needed to be used to get hubby out.  They got him on oxygen right away and were most concerned with him as he had the most severe injuries.  He hit his head and shoulder and had glass in his hand and face.  Once they got him out I managed to crawl over to the drivers side and get out.

The ambulance ride felt long for how far we had to go as Ed was in the back hurt, I did not know the condition of the boys especially for Jacob.  I refused triage until I could be with the boys and make sure they were OK physically and emotionally.  As I walked into the room Nicholas and Caleb were sitting in chairs but they had Jacob on a backboard, which made me really worried.  He thankfully was OK and they were just taking precautions.  They said he was probably a bit in shock and had a possible class 1 concussion, though not physical signs of him hitting his head.

Things finally calmed down.  Our parents started to show up at the hospital.  I needed my mom and dad so bad.  I was finally triage.  They ultrasounded my abdomen as I have a huge bruise and abrasions from the seat belt and they too and xray of my neck as a precaution as it is hurting but with Fibromyalgia I would be hurting no doubt.  I was clear of and major injuries.

Eventually the boys and I were released.  Now I can go check on Ed.  Praying he was fine, which he was.  They did a CAT scan of his head, and they were waiting to take him to xray.  All came back OK and clear.  Major relief for us all.  They went over directions and released him as well. 

We all went home and went to our bedroom and layed down together.  We all counted our blessings and held each other a bit closer.  Friends brought us dinner, the next night another friend came out and made dinner and tried to help Ed with the sewer pipe.  Yes we are blessed with the best family and friends.

A week later we are start to heal at least physically.  I am having trouble getting back to normal.  My lower back and bruised stomach are still hurting quite a bit, but with Fibro I know healing is slower from things I have read and personal experiences like when I had gallbladder surgery. 

I have to give Nicholas, our oldest a lot of credit.  I complain a lot about his attitude and not doing what he should, but this week he really stepped up and helped us as much as possible for a 12 year old boy.  I feel guilty he had to help so much, but we are trying to reward him and hope this helps all around.

I am ready to get back to life, but my body is not.  Tried to do some laundry and it really flared me up around my injuries.  So a few more days of taking it easy and praying to God to thank him for keeping our family safe in his hands.  We were very lucky and I am trying to remember that everyday.  Bumps and bruises will heal, and we still have everyone so nothing could be better.

Below is an article from Channel 6 New out of Lansing, MI.  Should be 3 kids not 2.  Also a few pictures of the truck after the accident.

Truck Flips on Highway

Posted: Apr 25, 2011 10:37 AM EDT
It was a scary morning on the road for one family Sunday as a man driving started to choke, veered off the road and flipped the family's truck over. It happened on northbound 127 between Page Road and East Michigan Avenue. Police say they had to pry open smashed doors to get the driver and his wife out. They were taken to a hospital and treated for minor injuries. Police say two kids sitting in the backseat had their seatbelts on and were not hurt.