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You Are NOT The Enemy!

Julie, from Chronic Illness Bloggers, shared this in one of our weekly emails, which I LOVE seeing every week 🙂 And I just had to share it

guest post by Kerry @ Chronically Zen

When I was first diagnosed, the battle lines were clear: it was me against Crohn’s disease. Crohn’s disease had wrecked my health and my plans for the future. It was not going to win.

But over time, something else also became clear. My Crohn’s disease, my health problems made things hard on other people. The first few years, my brother was my caregiver. He took me to the hospital, helped me recover from surgeries, and listened to me when I was terrified of what my future would be. All the time, he was covering up his own battle with OCD, which I didn’t learn about until years later.

My illness also inconvenienced my friends and my co-workers. I could mostly be relied upon, but they never knew when my Crohn’s (or an extraintestinal complication or drug side effect or infection) would sideline me. Plans had to be cancelled; project deadlines slipped. People had to do more to make up for what I couldn’t do.

So the battle lines blurred. Instead of being mad at Crohn’s disease, I was mad at myself. I was unreliable. I was letting people down. I was making life harder on my loved ones.

Sound familiar? So often, those of us with chronic illness forget who the enemy is. The enemy is our illness. We, unfortunately, are the warriors and the battleground.

When you slip and begin to beat yourself up, remember:

You are doing the best you can. Even if you follow every instruction from the doctor and take every treatment, you will still have bad days. Do your best on the good days, and give yourself a break on the bad.

The people who love you know this. Your loved ones want what is best for you. They want you to take care of yourself, and, if you can’t do that, they want to help.

You are not responsible for how other people feel. Are your friends disappointed when you have to cancel plans? Sure. Is your spouse stressed out because you have to quit your job? Absolutely. But this isn’t your fault. It’s the fault of the illness. (I struggle with this myself.)

That’s all that matters. Whispering co-workers? Staring strangers in the store? Even family members who are not compassionate and blame you for your illness? They don’t matter. You, the people who truly love and care for you, your medical team: this is who matters. Don’t let anyone else make you feel bad for what you cannot control.

Your health is a battle, every day, and the war is a long, hard slog. Don’t forget who the enemy is. And don’t forget the ultimate objective: a full life despite it all.

image of shoes with quote: "As we advance in life it becomes more and more difficult, but in fighting the difficulties the inmost strength of the heart is developed." Vincent Van Gogh

Kerry @ Chronically Zen
http://chronicallyzen.net
Diagnosed with Crohn’s disease over 20 years ago, Kerry has been through all the ups and downs of chronic illness. She lives in the South with her awesome hubby and her escape-artist puppy. She adores the Avett Brothers, coloring, and cooking competition shows. Currently, her favorite word is sanguine.

A Day In The Life With Chronic Pain · Autoimmune · Awareness · Chronic Fatigue Syndrome · Chronic Illness · Chronic Pain · Endometriosis · Expression · Health · Inspiration · Interstitial Cystitis · Invisible Illness · Mental Illness · Personal · Writing

The Words We Use-Re-post request!

Since being diagnosed with Interstitial Cystitis, Endometriosis and Pelvic Floor along with Depression and Anxiety, I feel like most people have stopped seeing me. They seem to only see the disabled girl with Chronic pain and diseases that have no cure.

When I am introduced to someone new the words and phrases people use to describe me makes me feel small. They make me feel like I am not doing enough to “make myself better.” When they talk about me, they only seem to see the endless stream of tests, doctors, surgeries. They have stopped seeing me and now see me as “The girl with Chronic Pain.”And it makes me feel like I need to push myself harder when in reality I already push myself beyond my limit every single day just to try and have a sliver of the life I once had.

My illnesses are not usually fatal and sadly I’ve come to realize that if you are not in danger of actually dying then people don’t feel the need to help you or use their own energy and resources to help you. This may sound harsh, but I am finding it to be more and more true. When most people hear that someone has a “Chronic Illness” they know that it is most likely going to “drag on” forever so there is no reason to try and help you if you are going to live with your disease forever if there is no cure.

People with chronic illness face a lifetime of pain, exhaustion, and disability. A lifetime of people telling them to get over it, of people telling them they they are too depressing to be around, a lifetime of failing to meet everyone’s expectations,  but that is not enough to attract anyone’s attention. Nobody would ever tell a cancer patient to just get over it and stop dwelling on their illness, but people with chronic illness hear this practically every day and that is ridiculous. It is also very hurtful to hear and some of us hear it over and over from our family and friends who cannot understand how we can be fine one minute and then the next we are curled up on the floor or the couch in pain.

I know for s0me of the best people I have ever met, those who have struggled with not having a diagnosis for years, finally having a name for their symptoms and illnesses is incredibly validating.

Once you finally have a name to what is wrong with you, it makes it much easier to treat it, or at least manage your symptoms and pain. But along with the names of your illnesses and symptoms also comes judgements; at least it does in my life. Some people research your illness and learn at least a little about it so they can help you deal with the emotional part of it and be there for you but then there are those who search google and find places that, for a one time payment can “cure” your disease, or this new medicine that is on the market that has amazing reviews online for being natural or articles by people that have “cured themselves completely using ____” or how thinking positive and talking about your feelings you can convince your body that you don’t have an illness and can therefor “cure” yourself. But then they get upset when you don’t read all the “research” they did or do everything they think you should be doing because the internet says it will help you.

I have only had my illnesses for a little over four years, but in that time I have come across so many others in support groups and illness forums that sometimes say they wish they could have a disease like cancer because people with cancer get support from family, friends, even sometimes people they just met. People seem to care more about cancer and they don’t care much if at all about chronic illness because it will go on forever. It’s Chronic. Most Chronic Illnesses have no cures, only treatments so some people will just assume it will be the same thing every day so why bother helping if it is going to be a never ending process?

For me there are not any words on the planet that adequately explain how difficult it is to be disabled by an illness that no one believes is real. For people to not understand how you can look fine on the outside and be smiling but be hurting on the inside. For people to understand how you can do a certain amount of things one day then the next have no energy to do anything, sometimes even getting out of bed is a challenge. For people who can’t understand how you can be fine one minute then the next you are in severe pain. Not to mention the insurance companies will pay for cancer treatment, they won’t pay for most chronic illness treatments or medications. Most of us have to come up with the money out of our own pocket to pay for a medication that may help a tiny bit or not at all.

We are people first. We are still human beings who have feelings and hate that some people have stopped seeing us as a person, but now see us as our illness or our symptoms. It is very hurtful for many of us. We just want some understanding. Some support to know we are not alone. I know my expectations of family and friends can just be silly, but is it really too much to ask for some support even if they don’t believe that I am sick? I could really use some support as I am going through this hard part in my life. I wouldn’t wish my life on anyone, and I do everything I can to be supportive of family and friends even if I don’t agree with their lifestyles or choices. Is it so hard to expect them to extend the same courtesy to me?

The words people use to describe others are important. Based on descriptions and words from other people, when you meet someone new you usually have already formed an opinion based on what others have told you about them. For those of us with Chronic Illnesses, most people automatically come to the conclusion that we are different, that we will never be like them because we have a different life then they do. Most people assume that we will never want to hang out because we hurt all the time. So they stop asking us to go out places. Stop calling. Because in their mind we are disabled, therefore we spend all our time sleeping or trying to feel better. They have already made up their minds about us based on one word. Disabled.

They fail to see how hard we try to still have even a tiny fraction of the life we had before our diagnosis and symptoms started coming around uninvited.When they hear the word disabled most people assume that we sleep all day, don’t get anything done, never go anywhere. They never bother to ask us what our days are like, because what they know about disabilities is what the internet has made us seem like to the outside world. Lazy. Selfish. Attention seeking. Pain pill addicts.

It never occurs to them that if they bothered to even look up our illnesses that we can still do a lot, just not all at once.  Hearing the word disabled used to describe someone, most people immediately think of someone in a wheelchair or someone with severe limitations in their movement and their lives. When they see someone like us who looks fine on the outside but still ‘claims’ to be disabled, they get this look on their face like we are horrible people because we are ‘lying’ about our illness. They don’t understand how can we be sick if we look fine on the outside. Society has made us ‘disabled people’ seem like we are just wanting money and free medical care and pain medications from the government. And its rare that someone actually tries to form their own opinion of us instead of believing the internet or the opinions of others that claim they know more about our diseases than they do. They believe the internet or other people because it is easier than getting to know us and trying to form their own opinions of us. It is easier to just believe what they are told rather than having to spend time with us when they ‘have better things to do’

We fight every day just to get out of bed while they take the little things for granted. Most people think that because life is the way it is for them that it will always stay that way. They never think of what would happen if all the things they were used to suddenly weren’t around anymore. They are used to going places all the time, feeling healthy, being able to go on long road trips, go to the bars, have a ‘normal life’ Have a relationship. Not have to worry about each and every minute of every day and how it will affect you and your ability to do even the simple things that they do without even thinking of it as a challenge. For them, that is just the way it is for them. They never think life would be any different.

What would they do if one day they woke up and they were suddenly sick with a chronic illness and their whole lives were about to change forever? What would they think if one day they suddenly could no longer go places without planning for every minute of it. Of taking many medications. Of feeling exhausted 24/7. Of needing a wheelchair. Of needing support to walk up a flight of stairs. Of not being able to do even the simplest of things they used to do before they got sick?

They judge us each and every day. With their words. The looks. The whispers and the giggles as we struggle to walk upright or walk funny due to our pain. If they woke up one day and their whole life had changed, would they finally see that we are people too? We are not just The Disabled People.

We have feelings. We matter too. Just because we are different it should not make us ‘outcasts’ in the eyes of someone ‘normal’

We fight every single day just to get out of bed and put on a brave face. We do the best we can with what we have. There are people in my life that do not think of the hurtfulness of the words they use to describe me. I am not just the disabled girl they know. I am a person first. My illness is not who I am. It is a part of me, but it does not mean that I have to let it control me.

My name is Karley and I suffer from Chronic Illnesses. I am a person first and foremost. I am not the disabled girl. I have a name and I am more than my symptoms and illnesses. I refuse to let my illness control my life and how people see me. If they cannot see past the disabled parts of me, they have to right to be in my life anymore. I am a person. I have feelings. My illness is not who I am. I am stronger than my disabilities. I am doing the very best that I can with what I’ve got.

Instead of seeing me as disabled or having chronic illnesses that have no cure, try using my name instead. I am a human being. I have a name. or have you spent all of your time being so focused on the labels that surround me and my life that you don’t even know my name?

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Stretched Too Thin….?

So I am going back and forth trying to decide if I want to take on another blog and have it focus on the different diseases that people have and how it effects them and those in their lives. I  have this blog, obviously, but I would like to make a new one that focuses completely on other diseases and illnesses besides mine.

I just finished reading a book called You’re Not You by Michelle Wildgen. And if the book wasn’t amazing enough, there was a movie made in 2014. You can see the trailer HERE.


Bec is adrift. It’s the summer before her junior year in college. She’s sleeping with a married professor, losing interest in her classes, and equivocating about her career. She takes a job caring for Kate, a thirty-six-year-old woman who has been immobilized by ALS.

As it turns out, before the disease Kate was a stylish and commanding woman, an advertising executive and an accomplished chef. Now, as she and Bec spend long days together, Bec begins to absorb Kate’s sophistication and her sensuality, cooking for her, sharing her secrets, and gradually beginning to live her own life with a boldness informed by Kate’s influence. The more intense her commitment to Kate, the further Bec strays from the complacency of her college life. And when Kate’s marriage veers into dangerous territory, Bec will have to choose between the values of her old life and the allure of an entirely new one.

My husband is worried I am pushing myself too hard, which I probably am, but this is something I would love to do, either on my normal blog or create a new one.

I want to learn more about other illnesses and help others any way that I can because I understand what it’s like to feel like you need t0 be able to handle your illness yourself.

I understand how you spend months, even years being told that your illness is all in your head and as much as you try to convince others that it’s not, the more you start wondering if what they said is true, maybe it was all in your head.

I understand how diagnosis changes your life in more ways than get more most people even realize, especially if you have in invisible illness and you look fine on the outside.

I know how validating it is the moment the doctor comes in and says you have a Chronic/Invisible/Fatal illness. You sit there, your hands fidgeting, your heart beating so fast you think you might pass out. You want to scream at them to tell you what the tests said already, not try and make small talk first.

You are so relieved that your illness is not in your head, that you are not crazy, there actually was something wrong with you this whole time and if you would have listened to the people who told you it was probably nothing and that they wouldn’t bother going to the doctor for something so minor, you may not have caught this fast enough to help stop the progression of the symptoms. You (Well, I know I did) feel a little guilty satisfaction and smug when you tell those who doubted you that you do have something wrong with you and that they were wrong.

I know what it feels like when the relief that it wasn’t in your head goes away. Finally, I have a diagnosis and it wasn’t in my head after all! Then, sometime later after the doctor leaves and you go back home, you crash. Hard. You’re whole world has changed. It suddenly hits you that nothing will ever be the same again. You spend hours imagining how life would be from now on and how you imagine handling it. No Scenario can even come close to what really happens when you get sick.

When you get sick, everyone always says “I am always here for you.” but in my experience they say that but always end up walking away the moment you start struggling with your illness and you cannot go places or do the things you used to do. They loved hanging out with you and constantly making plans as the person you were before. They are always there for you when you are healthy and can keep up. They aren’t there for you when you get sick because you cannot go places and do the things you used to do. You change; physically and emotionally. You become a different version of you. You have to stop going the pace you were before. You’ve had to take a step back from things you love.

And….end ramble 😐

But my husband is probably right. I currently have 13 social media sites just for my blog that I try to keep up with, I have two Facebook pages that I created, my personal Facebook, Beautiful Tarnished Spoonies Facebook Group I made, and I work for Chronic Illness Bloggers.
I want to know what you all think. Comment below or reach me on any of my Social Media Sites! I will take some more time to think about it, but do you think it is  a good idea?
A Day In The Life With Chronic Pain · Awareness · Chronic Fatigue Syndrome · Chronic Illness · Chronic Pain · Depression · Endometriosis · Expression · Health · Inspiration · Interstitial Cystitis · Invisible Illness · Personal · Writing

The Bright Side Of Disability…?

When most people are diagnosed with a Chronic Illness, me included, forget to try and find the small sliver of hope and try and see the good things about having a Chronic Illness. I know, you’re thinking how can there be anything at all that is good since being diagnosed with a Chronic Illness and having your whole world spin out of control?! 

I admit, it has taken me years to finally do the best I can to see the good things that have come into my life and the lessons I have learned since being diagnosed despite all the new and difficult changes I had to make in order to deal with my illness better.

Here are a few of the things I have noticed since being diagnosed with Interstitial Cystitis, Endometriosis, Pelvic Floor Dysfunction, Anxiety and Depression four years ago. There are so many things I have noticed since being diagnosed that this post would end up being almost as long as a book, so here are just a few of the things I have noticed most of all.

You are grateful for all of the little things in your life. You know how precious time is and you don’t waste it. You are more compassionate to others. You recognize the beauty in the little things. And most of all, I have learned that you are never ever alone. You will always have the Spoonie Community to help you. Reach out, there are so many amazing resources and support options out there, you just have to reach out. You never know how reaching out can help you as well as others. Please reach out, you never know how someone’s life will be affected by you and your story. All we want is to never have to deal with it alone, and thanks to the amazing support options available, we should never have to.


In my newly created group One Spoon At A Time, I asked this very question and here are some of the responses I got shortly after posting in the group.

Celina-Because if my food sensitivities and diet restrictions I’ve lost about 50lbs.

Elaine –Saving money by not going out as often.

Emily- I don’t have to deal with boy-drama because I can’t date 

Karley- I’ve gotten closer with my grandma and spending a lot more time with my husband

Ty-I’ve become more humble and understanding of other’s limitations.

 Janelle-I’ve learned to become patient. I’ve been overly active all of my life. I used to feel guilty for calling in sick to work. I also felt guilty for laying on the couch and watching tv during the day when I was sick. I always felt like I should clean and do laundry, so I usually did. I’ve learned with IC, PFD, and clitorodynia that when I’m flaring it’s OKAY to lay around watching tv. The cleanliness of my house is no longer my top priority, my health is.

 Kristy- All the time I want with my grandson.

MaryJo- I surely have learned not to judge as much you never know what a person has gone through

Cher-Genuine Friendships.

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30 Day Challenge · A Day In The Life With Chronic Pain · Awareness · Chronic Fatigue Syndrome · Chronic Illness · Chronic Pain · Depression · Endometriosis · Expression · Health · Interstitial Cystitis · Invisible Illness · Personal · Random · Writing

30 Day Challenge: Day 29

Day 29L Bullet your whole day

Uhhhh, just so you all know, this is an embarrassing post to write because when most people describe their days, they did something cool, or at least got lots of things done. My day however, is always different depending on my pain levels and even then I rarely have even a slightly productive day.

Bedtime-10pm-I usually go to bed before 10 every night, even with at least one long nap during the day. I rarely wake up feeling rested or relaxed. Usually I wake up every morning feeling like I got hit by a truck, despite sleeping in until noon. My grandma used to always tell me that if I sleep too much, I am more tired than if I had gotten less sleep. As true as that may or may not be, it doesn’t make me feel any better. There have been many times where I make myself stay awake all day, so that I can sleep at night. Even those times, I rarely get a good nights sleep because I toss and turn a lot and usually either have bad dreams or strange ones. There have been many times that I wish I could just fall asleep without having any dreams at all.

Noon- Slowly start waking up, usually it takes me a while to go from laying down, then from sitting up, then even longer to get from the bed to the couch and by that point I have already lost what seems like 3 spoons already and my day hasn’t even started yet!

For those who are just starting to read my blog or don’t know what a “Spoonie” is, here is a post written by Christine Miserandino called The Spoon Theory.In the post, she describes to a friend of hers what it’s like for her to deal with Lupus. She gives her friend 12 spoons and asked her to tell her everything she does on a normal day and each task will take a spoon, sometimes more, before she even gets out of bed. She does not have the option to get more ‘spoons’ to help her get through the day.

2pm- At this point in my day, I have successfully made it from the bed, to the bathroom and then the couch, feeling exhausted. I hadn’t even tried to change my clothes or shower because already I was running low on spoons.

2pm-7pm- I always feel embarrassed when admitting that usually by the time I get to the couch, I rarely move from my spot. I watch Netflix, rest, and try to save my energy for the shower I desperately need later today. And since it is Monday, I have plans with a friend of mine to go to the dollar store and try and work out my stiff muscles and get as much exercise in before I hit my exhaustion point. We do this each week. Some days we just watch a movie, but most weeks I try and force myself to go out somewhere, anywhere to get the little exercise I know I need and try and relearn how to be human around ‘normal’ people.

7pm- At this point in my day, I usually require the help of my husband to help hold me up in the shower, or help me out when I sit in the tub letting the warm water relax my muscles and, I swear, Every time I take a bath and let the water cover me and I feel myself relax, I wish I could meet the person who invented the tub and tell them I love them because I feel so much better after the bath with Epsom salts. It never lasts very long, the relaxed and pain free moments after my bath, so I usually head right to lay down on the bed while I try and get ready for bed.

8-10pm After my shower and getting dressed if I have even a fraction of energy, I wash my face, put moisturizer on my face and then put my lotion all over my body to try and give my body the moisturizer it desperately needs before it ends up cracking and bleeding from the dryness.

10pm- Finally, I stop fighting my body to stay awake and slip into an unrestful, but needed sleep.

My day makes me so embarrassed when anyone asks me what I do since I can’t work and so I sit at home all day. Some days I push myself to do something easy but productive, just so I can feel even a fraction less embarrassed when people ask me about my day.

Since my doctor appointments, (Pain Management, Physical Therapy for my bladder, Endometriosis and Pelvic Floor Dysfunction, surgeries, tests, and new treatments that I really hope will mean the end of my pain, of my body trying to destroy itself from the inside out) and other appointments are not set at the same time each week, there are a few days during the week that I do get out of the house. I do go places. Yes, my life is super boring and it seems like I want to be lazy, but the truth is, I would trade anything in the world in order to have even just one good day a week.

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30 Day Challenge · A Day In The Life With Chronic Pain · Awareness · Chronic Illness · Chronic Pain · Endometriosis · Expression · Health · Inspiration · Interstitial Cystitis · Invisible Illness · Personal · Writing

30 Day Challenge: Day 1

A few months back I did the Chronic Illness 30 Day Challenge. The challenge: 30 posts in 30 days talking about chronic illness. I came across this while searching on Pinterest, Now I have found another cool challenge while once again on Pinterest. There are hundreds of challenges on Google Images as well.

Usually I try and write my own stuff, but lately I have had a lot going on and don’t want to fully stop blogging so I have decided to throw one of these into the mix every so often to shake things up and give me a little break once in a while so here I go!!

30 Day Challenge: Day 1: What, why, and where I write

I first started blogging after having symptoms of what I now know is Interstitial Cystitis, Endometriosis and Pelvic Floor. I have pretty much been into writing my whole life but after getting married and having a wonderful  four moths with my husband, the symptoms started and changed my life forever. I was fine, until I wasn’t anymore. I blog about Chronic Illness as a way to deal with the changes in my life as well as to try and help others know they are not alone in the fight to finally have a name for what is wrong. I know what it’s like to have little to no support from family and friends, and I wouldn’t wish that on anyone. I spend a lot of down time on my couch or laying in bed depending on how I am feeling that morning and how bad my pain is. I recently had the Botox Bladder surgery a week ago today, and so far I have to say, I am not too impressed. I know it can take up to two weeks to work, but so far it has only seemed to make it worse on my IC (Interstitial Cystitis). I have spent the whole week off and on between the couch and my bed. I did get to go to Walmart today, so yay me! 😀

So there you go. This was day 1. Keep checking back for more awesomeness!!!

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A Day In The Life With Chronic Pain · Awareness · Chronic Fatigue Syndrome · Chronic Illness · Chronic Pain · Invisible Illness · Writing

The Spoon Theory

When I was first diagnosed with my illnesses, someone sent this to me and it has always helped me try and explain about my illnesses and how hard it is to do even the simple things these days. I also send it to my family members or old friends who either cannot understand what I am going through or choose not too for their own reasons.

Written 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

 

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