Thursday, 6 November 2014

The Spoon Theory - a great insight to life with a chronic illness

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.
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".

Monday, 3 November 2014

Learning to be OK with small wins!

I am aiming for 80/20 in my wellness - 80% being well - 20% being Ok with when I am not well and looking after myself to get to the wellness point ~ Had my 7th personal training session today, It was tough because PAIN beyond PAIN got in the way today, my muscles all in my tummy spasamed so bad that I had to stop at 30 mins. Disappointed YES! But tomorrow is a new day ~ so pacing myself today and shaking off the NEGATIVE self talk I often posses when PAIN ruins my plans!

Friday, 24 October 2014

Can you relate! So is me RIGHT now

Natural Pain killers You might Just have In Your cupboards

Taking care of Business

In my last post or 2 ago....I promised not to neglect my BLOG...I have been so busy looking after myself and my family things kinda got a little neglected! So just to put things into perceptive it 2:18am and I am BLOGGING!!!!

So wanna know what I have been up to lately! Well first of all I decided to take charge! That's right OWN it - Pull myself out of "THIS" wirl wind of illness and feeling like BLAH and do something!

So I started with Food. I thought I had a big hang up with the stuff, So I went to AA for fat people (weightwatchers LOL) I like became a member worked out my points, looked at the horrid number on the scales, felt more depressed, sat and talked about being fat, heard all the excuses, flipped around my thinking, went home lost some weight eating points and fake chocolate bar things they sell at the meetings and then went HMMMMMMMM (light bulb moement) Why is it that everyone in my house is not fat? Why is it that we all eat the same Yet I am the only one struggling with weight? OK so yep I have had 4 children, Well that's just an excuse really because at aged 20 I had 2 children under 3 and once my baby was one - BOOM I looked awesome! So how come at 32 with my baby now being 1 I look nothing like I did at 20 weight wise, I have no energy, I look like CRAP and everything seems so doom and gloom.....What did I do at 20 that I wasn't doing now???? EXERCISE!!!!!!!!!

WW told me not to "bother" with exercise, in fact just eat our food and it will slowly come off (the weight)
I listened to this and thought NA, I know myself and I know that if I don't start seeing results of some description in like 4 weeks I am going to fail.

Don't get me wrong here, WW is probably a fab program for those who it works for, given my complexity of this illness it just wasn't working for me. I didn't feel ALIVE.

Oh and just in case your wondering why is being written at 2am Bubs woke up for feeding and I kinda stayed awake (I will go back to sleep though after this post I promise!)

So anyway back to the beginning! My aaaahaaaa moment, or what ever you like to call it! So the gym, in my time of being a mummy I have probably had about 5 gym memberships that have helped me lose money not weight, I start of great for the 4 weeks, then find EVERY excuse not to walk in the door, When I am there the workout part is GREAT! Its the starting motivated to get in the door.

So I needed a plan, one that was going to WORK and WORK me, Loads of friends offered to be my Gym buddy, take me for walks, But I already knew that wouldn't last, past behavior is the best predictor of future behavior and Sally would just end up taking that friend out for coffee and CAKE!!!!

I needed a professional.

Someone who can supervisor me, push me, keep me focused and more importantly get me feeling ALIVE again.

I needed a personal trainer!
To be honest when I use to think personal trainer; I would think buffed up, lives on protein shake, banana eating, paints themselves orange person who would probably look at me and go UMMMMM yep you have lots of hard work to do and has zero idea on how my life got to be like this.

So I did some research.....And found one with Empathy, One who got results, but also GOT what being a Human being was about, One who GOT the challenges I faced and was dedicated to customise a program
to fit my needs.

Week 1! DONE!
3 sessions of one hour personal training per week for the next 6 weeks is MY first goal.

How do I feel? ALIVE!!!! I feel ALIVE!

I hurt, I am sore BUT I am ALIVE - I have courage again, I have inner strength that I forgot I had, I have motivation, I have purpose, I have Hope, I see that I can do this!

I see a future.

I was told there was nothing more medically that could be done, I was told I would probably just get sicker and quality of life was what we are treating now - I heard I have no future.
My injuries HURT like heck, my strength in my left side is far lower than my right, my right leg burns, BUT I am going to focus on my abilities - My co ordination is off, I have problems with certain pathways not getting messages through, BUT my spirit of fighting to get WELL is BACK!!!!!!!

Its a long weekend this weekend, I have 3 walks scheduled for my 3 days, 20 minutes of basic cardio nothing too crazy, I have an awesome APP which tracks my calorie/food intake and exercise, But most of all I have a PLAN!

I have a long road ahead to get to my BIG goal of working again, there is going to be some bumps in the road, twists and turns,but in the many road trips I have taken in my life to the most beautiful places the roads have always been full of these! :)

Oh one more thing...Friday evening my husband came home from work and was like WOW! I was like what? He was LIKE, YOUR EYES SALLY they are amazingly clear and so BLUE :)
Got my SPARKLE back apparently! :)

Salz x

This is my trainer
Flex fitness is where I am undertaking my journey to wellness :) Fab gym, great staff and all around awesome!