The Importance of Spoons

Spoons!

They are handy for taking medicine, measuring, and for eating but they are so much more valuable than they appear to be.

I'm not talking crazy talk, I promise! This is what it comes down to.

Pain is a bitch.

A hardcore, evil, and relentless bitch.

I know I normally don't use profanity of any kind on my page or on my blog, but there has to be the occasional exception. This is one of them.

I can't remember what it's like to not be in horrible pain. It seems like it's been ages since my body felt the way that it is supposed to... But in reality, it wasn't all that long ago that pain was not a part of my existence.

Five years ago, I had finally managed to shed all of my pregnancy weight and I was feeling amazing. I was healthy, fit, and full of energy. My career was taking off and life was great.

I wish I would have known that it was all about to come crashing down around me. I would have lived it up a little more.

I would have gone horseback riding. I would have gone on hiking expeditions. I would have ridden every wild roller coaster within 1000 miles of here. I would have gone skydiving. I would have gone bungee jumping again. I would have ran through a field of flowers, enjoying the simple pleasure of feeling light on my feet. I would have gone snowboarding or ice skating. I would have enjoyed having the ability to be active.

These things are all out of reach now, and there are times when it really bothers me.

The last week has been tough hell. I feel worse than I normally do and it is definitly one of the times where I am unhappy with the limitations that I have. I've tried, in the past, to push those limits, but I always end up hurting myself. I have learned to respect them, but there are times that I also resent them.

Right now, I am resentful.

My back keeps twinging and my legs have felt as if I am soaking them in molten lava. I know I am on the verge of throwing my back out in a bad way. It won't take much. A sneeze. A turn taken too quickly in the car. Laughing. When my back is on the edge, as it is now, it takes practically nothing to push it over.

In addition to the normal pains and aches, I've been feeling really weird. My left elbow and shoulder have been hurting really badly. I've never had any kind of arm pain, so this is new. My knees have been inflamed and painful. My right leg is twice the size of my left. And perhaps the strangest thing of all, is the night sweats that suddenly started a week ago.

I have been waking up several times a night for the past eight days, with my clothing completely soaked. I have to change because the house is very cold and drafty during these winter nights. I'm not sure what is going on with my body. The only time I've ever experienced this was right after a steroid injection. But my last injection was 5 weeks ago and the steroids work their way out of your system by the 2 week mark, so I know that can't be the cause.

I've also been tired EXHAUSTED! I'm always tired. My back does that to me and Aiden does that to me, so this isn't new. But the last week, I've been beyond my normal level of tired. I've needed at least 11 hours of sleep each night and have been taking 1or 2 naps each day that last about 2 hours. I always need at least 9 hours of sleep to feel well and function, but 13-15 hours of sleep a day is ridiculous.

I've been trying to get our house together and begin packing, since we're going to have to move in two months or so, but I'm not making much progress. I'm so tired. My hands won't move the way I need them to. My body is on the verge of collapse after twenty minutes of packing or cleaning.

If you don't have a chronic illness, it's hard to understand. Very hard. That is where the "Spoon Theory" comes into play. I've never been able to articulate how it feels to be me. When I found this article I cried. It is beyond accurate. Take a peek:

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

www.butyoudontlooksick.com

So this is why I say that pain is a bitch. Exhaustion is a bitch too. I wish they would both drop dead and leave me the hell alone. It seems like my supply of spoons is being depleted. Let's say I started off with 30. I'm now down to about 10. I want my spoons back.

It was important for me to share this with you all because from time to time, I will be MIA for a few days. I want you to know, that I hate being away and that the only reason that I am, is because I have to use my spoons for that day for other things. And sometimes, I wake up with a shortage of spoons. Those days are really rough. I will be back in full swing tomorrow, but Corrin is rocking and rolling as the Head Honcho until then.

I miss you all and thank you for being patient with me. I will be posting another blog later today about a situation with Aiden that has also made life difficult over the past week.

With Love,

Amanda

So this is Christmas...

I'm dreading Christmas for the first time in my life.

I never thought I was capable of feeling this way, but as the reality of my future becomes more clear, I wish we could just skip Christmas all together. The last few years of my life have been hell tough, to say the least and I'm hoping that what is about to transpire is the grande finale. I'm beyond burnt out.


For the past two weeks, even with my own problems looming in the distance, all I could think was that  if I'm struggling this much, then there has to be other families in the depths of despair. Other families like mine. You know. The Autism Families who are struggling financially. :) And all I could think about was helping THEM. How many families aren't going to have gifts to put under the tree on Christmas Eve? It absolutely breaks my heart to think that there are kids who are going to wake up on Christmas morning without any presents.  If they are like Aiden and believe in Santa with all of their heart, they are going to be devastated when he somehow forgets to make that stop on Christmas Eve. And then last night I realized something. Aiden is about to be that child. :(

This will be the first Christmas since I became a mom that I am broke and unsure of where Aiden's gifts are going to come from. Even worse, I find myself once again scrambling to try and come up with the money for December's rent and as we began decorating for Christmas this weekend, all that ran through my mind was that if we get evicted, it's going to be heartbreaking to have to pack up our entire home... and all of our Christmas stuff before Christmas even arrives It's times like these that I wish Santa Clause was real... he would be extremely useful in this particular instance.

God blessed me greatly when he chose my mother to be the person who was responsible for giving birth to and raising me. She always, always, always made Christmas the most magical experience for my sister and I. Even when my parents were struggling financially and had nothing to spare, they always found a way to get gifts under the tree. The Christmas gifts that Santa left were always abundant... my mom has a knack for transforming seemingly insignificant things into something wonderful. When I had Aiden, I vowed to give him the same experience that my mom gave to me.

How in the world did I get here? I worked so hard to be where I was, and take care of Aiden the way that I was able to.  It's all slipping away and it's devastating. I feel like I'm just watching it happen in slow motion.

When I became disabled in 2011, I had just been promoted to a position that every girl in my industry dreamed of having. I loved my job more than almost anything, but dealing with a special needs child and my own chronic condition for over three years had taken a toll on my body and the demands of my career had become more than I could handle. My work began to suffer and everything at home began to suffer. So I made the choice to go on Short Term Disability which transitioned into Long Term Disability. My back continued to worsen and I had no choice but to have surgery in February of this year. I was in agonizing pain and I couldn't care for myself, let alone my child.  Just to show you how much pain I was in, check out the picture below. I had to sleep like that EVERY night for an entire month because I couldn't sit, stand, lay, NOTHING! It was awful.

February 2012 - 10 days before surgery

After surgery, my excruciating leg pain was gone, but my back problems remained and actually became worse. I couldn't even complete physical therapy because my back was so unstable. I started to see a new pain management doctor, who after evaluating me and reviewing my MRI's and records, said I would more than likely never be able to work again. That same day, my Long Term Disability provider called me to say that my claim had been closed and I would no longer receive my benefits.

This was a HUGE problem for me being that Aiden's dad left us in June. I was able to get him to pay our rent last month, but for December he is refusing. My electricity and gas are two months past due and I pray every night that they don't get shut off. My phone is past due. My water is past due. Everything around me is crumbling and I am helpless. 

All I can do now is trust that whatever happens is what is meant to happen and roll with the punches.

I am praying for a Christmas miracle and am asking for you to pray as well! There is power in prayer and I am begging for your help! 

I don't want to put Aiden through this right before Christmas. If I don't pay rent, we'll have to be out the week BEFORE Christmas. Which means packing up our trees. Our decorations. Our everything. I can't help but think it will be traumatizing for Aiden. To take all of his magic and wonder and pack it away in a box right before Christmas seems cruel. And the biggest issue of all is the Autism factor. We all know how DETRIMENTAL sudden change can be for our kids. It provokes uncontrolled anxiety, confusion, and disregulation. If we have to leave our home, especially in this manner, it will mess Aiden up for months. 

Over the summer Aiden had a severe episode of regression. He was extremely violent and was obsessed with death (this was triggered from my dad having a severe heart attack a few months prior), and life just was becoming a living nightmare. Nothing I did helped. Aiden wanted nothing to do with me and was so full of rage. I injured my neck and re-injured my back restraining him from hurting himself and his old behavioral therapist. He finally began to improve a few weeks into this school year and has been doing amazingly well since September. I don't want to EVER be back in that element again and I fear this move might trigger another round of violence.

And then there is my back. To pack and move is physical labor. I can't lift more than 5 lbs without ending up crooked and laid out for weeks. My Grandfather was seriously injured this past weekend in a FREAK accident (his car exploded and he sustained 2nd degree burns to his face and hand) so the entire family is trying to take care of him, which is very difficult. My mother just had foot surgery, my father has enough stress and is a survivor of sudden cardiac arrest so we can't put too much on him. My sister has a bad back and the list goes on and on. I'm on my own and I am not capable of doing it. Even if I manage to pack up, where will I store my belongings? I have no money for a storage unit.

So this is my sad story. I don't want you to feel sorry for me. I'm not asking for pity. I've been handed the life that I have for a reason and I truly love it and embrace it. Even the not-so-good parts. But I have learned that when you need help you have to ask for it.

I need your help. I need your prayers. I know that God will take care of Aiden and I if I remain faithful. But as I said earlier, there is so much power in prayer. And there is power in numbers! Please pray that Aiden and I are blessed with a Christmas miracle! A roof over our head. Food on the table. Presents under the tree. All of the things that my amazing little boy deserves just as much as every other child! Christmas should be a magical experience for every single girl and boy! We transform into grown ups way too quickly, and the magic of Christmas gets lost. Kids should be able to enjoy it while they can. So all I'm asking is that you take one minute of your time today to pray that Aiden will have a magical, beautiful Christmas. 

Thank you for taking time out of your day to be a part of my life.

Merry Christmas!

~Amanda~

I Walk...

I walk for my sweet Aiden.

I walk because I love you more than words can ever say. You were my precious little surprise. The piece that was missing from my life. When you came into the world, I was complete for the very first time. I never knew how empty my existence was before you were born, You, my little miracle, are everything I never knew I always wanted.

I remember the day we brought you home from the hospital. After you were born, we spent twelve agonizing days waiting for you to come home and when the day finally came, we were elated. Daddy drove about 25 mph the entire way, raving about crazy drivers the whole time. At long last, we arrived. Once we were inside of our apartment, Daddy set your car seat on the floor and we stood there in silence for a very long time, just staring at you. I finally confessed to your Dad that I didn't know what to do now that we had you home. We had waited such a very long time for this moment but once it arrived, we were clueless.

Turned out, I had nothing to worry about. You and I settled into a comfortable routine and I was amazed at the intensity of the love I felt for you. I would spend hours just holding you in my arms. I would stare at your tiny little fingers and toes. Your perfect nails were so tiny and thin! I would run my fingers very softly over your face, memorizing the slope of your nose and the curve of your chin. Your beautiful eyelashes were long, dark, and thick and when you would open your eyes after a nap, they would bat wildly and your lips would purse. You were the most perfect creature I had ever laid eyes on.

I walk because I know how painful it is to hear the words, "Your child has autism." When you were diagnosed at the age of 2, my heart broke into a million pieces. I had already known in my heart for quite some time, but hearing the words was something I could have never been prepared for. My world came crashing down as I began to see a future that was completely uncertain. I had the dream, as every mother does, that you would have a blissfully happy life complete with a thriving career, a beautiful family, and a dog frolicking in the backyard. When you were diagnosed with ASD, it felt as if my dreams for you would never come to fruition. 

I know now, that you are every bit as capable as you were before the diagnosis of fulfilling those dreams... possibly even more so. The future is still filled with uncertainty, but I can give you the tools and skills that you need to overcome your weaknesses. I can support you and love you and teach you how to be an honorable, hard-working man.The rest is up to you, my precious son. 

I walk for families living with or affected by autism.

I walk because I want other parents to feel the hope that has replaced my despair. There will still be plenty of days where it all seems to be too much. Days when the realization that your child has autism hits you all over again and so does heartbreak. The tribulations will sometimes outweigh the victories, and there will be times when you are moving backward even though you desperately want to be moving forward. Just know that triumphant moments lie ahead. Live in the moment, savor each victory, and continue to strive for the next. Every victory, no matter how small, is the fuel that will keep you going.