Tag Archives: Lupus

I am tired…

Open letter to my love…

I am tired. I know you try to understand. You see me go to sleep, you see me wake up. Each and every day is a struggle for me in some other way. Today I might have a hard time holding my head up. Tomorrow I might have a hard time bending over to pick up something I have dropped, and I will drop something often. I am tired. I am tired of being held captive by the monsters that have my mind and body in their steely grip. I never know what kind of day it’s going to be, and I never know what I may be able to accomplish today if anything at all. I may not always be able to think clearly enough to help you with things or the girls with their homework, remember to pay a bill or sometimes even pay one twice! I may forget to stir the food on the stove or take it out of the oven and maybe it will burn. Of course you understand so this will never bother you but it upsets me, because I feel that I’m not doing a good job of taking care of you. I am tired. I am tired of smiling and pretending that everything is okay when inside I feel like crying. At times I hide my deepest feelings inside myself because there’s nothing you can do and I don’t want you suffering for me, this is one thing you just can’t fix. I love that you take the time to understand how difficult each day, each task is for me. Although I am tired of fighting a battle that I feel we may never win, we can’t and won’t stop. I do the very best that I can every day, still not ahead. It feels at times that its never enough. It costs precious energy that I cannot spare to keep fighting and I’d rather save that energy so that I can spend time with you. It might not be a lot of time, but I try to make it quality happy time. I try not to complain, no matter how much pain I may be in or how tired I am. But I am so very tired… I am tired of being sick. I wish that things could go back to the way they were before but I know they can’t. I am sorry I’m not the person you used to know or the happy fun mom that I used to be. No matter how hard I try, that person is lost. All you have left is the person who fights to remain strong, the person that sometimes needs help for the smallest of tasks, the person who has now become your fight too. I’m so grateful that you still look at me with that same loving stare, can laugh at my dumb jokes, are the best husband/father ever and just love me unconditionally. I am just so very tired and…I know you are too. We are tired. I am so happy that we at least have each other to be forever happily tired…together.

~Stacey 

Understanding Chronic Illness 

Just Krazed – Just for Fun in a Krazed World


More personal look at Stacey

A more personal look at Stacey…

I don’t dwell on my issues, that has never helped. The things I’ve endured in life, mine and my families struggles haven’t broken me, they’ve only made me that much stronger and more understanding.

My conditions do not and will never define ME however they will always be a part of me and I’m ready to share that part. ~Stacey 💞

Stacey’s Journey

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For me there are so~so days, bad days, really bad & then my OHH MY HOLY HELL days….Stacey

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Thank you for taking a few minutes to learn a little bit more…about me. It’s not all of me but a major part. They took a lot from me over the years and I had always wanted to do something where I could bring more of myself back while helping others. That is where most of the ideas for this page were born.☺️💞

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Always remember~You’re never alone with us!

Love & Gentle Hugs, Stacey 

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Chronic Illnesses~Understanding is the BEST Medicine

It’s not compassion or pity we want it’s…Understanding!

Whatever you may suffer from, they do NOT define you! You have them, don’t ever let them…have you. Stay Strong, Positive, Focused & Confident! Stacey💜

If you suffer from a chronic, life long medical condition that have caused you to alter your entire life in ways you never imagined, cause you to at times not be able to function as you used to, pain, fatigue and whatever symptoms you may have you have probably explained it over and over to people in your life altough they make the effort to understand you know they still don’t really get it. Fact: You can look GREAT and still feel like complete trash!

Life with chronic illness has its moments of ups with many downs, see part of My Life, My Journey here.

This has been one of the best ways to explain to family, friends anyone in your life that just “dont really get it” no matter what you say, do or how you explain. It’s a very popular write up by a women specifically with Lupus, explaining how Lupus impacts a person however it became so popular in fact as there are many other conditions that this is SO relatable to. I do suffer from Lupus, MS, Fibromyalgia…the list goes on but I will share my personal story later my intention is not to put you to sleep lol it’s to let you know for 1 you’re NOT alone, never alone, 2 this hits home for so many more than Lupus sufferers, if you suffer from Fibromyalgia, you will nod your head and go yes! Your loved ones will say omg I had NO idea it was like “that”. Trust me even the ones you think are fully aware and understand, don’t always truly get it. Nobody will ever understand how another “feels” because that’s just not possible however finding ways to explain not just the medical definition, terminology and specific criteria it is at times difficult to find the right words which is why this has been great! Even if you have read it before, read it again. Share it with loved ones, not just because you don’t have faith in their understanding but also because it’s a great reminder of why you’re in bed more often than not, why you never “feel well”, why even if you say “I’m ok” you most likely aren’t but you’re sick of being sick and sick of explaining WHY you don’t feel well, you just DON’T! Why you break plans last minute or like me unable to even make plans at all because you know you may not be able to stick to them.

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The Spoon Theory

by Christine Miserandino
But You Don’t Look Sick?

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?

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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”.

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Gentle Hugs, Stacey ~ #BabyKrazed 💞

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