What is a Spoonie?

What is a spoonie, you ask?  A spoonie is someone living with a chronic, tiring and painful illness because of the endless fatigue and lack of energy.  The word is derived from The Spoon Theory written by Christine Miserandino. who wrote the essay to her family and friends.  You’ll find this nickname, along with others, used by many in online social media (Twitter, Facebook, forums, etc…).

  

We look normal just like any other healthy individuals who think we don't look sick. We may not handicaps, have a broken bone or visibly disabled.  That makes it difficult for "normals" to understand why we need accommodations. Although we look perfectly healthy, we may need to use a wheelchair, a cane, or other tools but most of the time we do not want to look helpless or attention-seeking. We usually push ourselves through the difficult tasks and regret soon after. That's what we are. We may be too exhausted to keep up with standard social conventions. Many invitations have been postponed or cancelled after considering the number of spoons we have used up for the day. We may have difficulty with memory, with speaking, with being able to perform efficiently at work sometimes.

If one day you see me on a public transport during peak hours and dying to get a seat or have got on the "reserved" seat, it may strike you as being lazy. We are not.  We want to work.  We want to walk without assistance, go out to the movies, wine and dine with friends and party until the wee hours. We hate to spoil the mood if needed to excuse ourselves early. We hate to go home early. So we just simply avoid it because we know we cannot.

We did not ask for this any more than someone struck with polio or cancer asked for it. We are not lacking in moral fiber. This is not a personality defect. We are, in fact, ill, even if we do not look sick. There are many more of us out there than you would believe. Most of us want our privacy about our health, the same as you. We are not always forthcoming about how much pain we are in, how weak we feel, how hard our daily lives are.

We are afraid of the stigma. We hate to hear things we do not want to hear  because those words will depress us so much that we hate ourselves more. We do not know if anybody would understand because so far none of the "normals" in my circle know what is wrong with me!

Letters

As a Fibromyalgia sufferer I do not want your sympathy, I just want you to understand who I am because I may forget.

Yesterday I may have been limping, today I may be skipping, tomorrow I may be having a sofa day.

Yesterday I may have been on top of the world, today I may want to stay in doors, tomorrow I may not be able to get out of bed.
 

Although my pain is all over, yesterday my leg may have been hurting more than my arm, today its my head, tomorrow it may be my back.

Yesterday I was able to make a three course meal, today its a frozen meal, tomorrow its Jam and bread.

Yesterday I climbed a mountain, today I may manage a mile , tomorrow I may manage a smile.   Yesterday I may have been engaging in great conversation, today I may forget my words, tomorrow I may have forgotten we spoke. It's not easy living with Fibromyalgia, even harder when others do not understand you!!

By Hannah Hill

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To Friends & Family:  

Having an invisible chronic illness means that many things change.  Just because you can’t see the changes doesn’t mean they aren’t real.

Most people don’t understand much about these diseases and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …

These are the things that I would like you to understand about me before you judge me…
I look normal.  Don't let my outward appearance fool you; I am in pain. I am not the same person I was a year ago, or 2 years ago, or 4, depending on when it last was you saw me. I look healthy. I am not.  

Please understand that being sick doesn’t mean I’m not still a human being.  I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable.  So if you’re talking to me and I sound happy, it means I’m happy.  That’s all.  I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy.  If you want to comment on that, you’re welcome.

My condition changes from day to day, sometimes even hour to hour. Today I might be able to walk with you a few miles; tomorrow I may not be able to get up off the couch. A week ago, I felt almost human; next week I may feel like something less than what the cat drags in. I may want to do all the same things I use to: to work late , take long walks, socialize, keep some sembelance of household order, but I may not be capable of it.  

If I say "maybe later", please understand and accept this for what it is, which is not an excuse, it is a reason. I don't enjoy my new limitations; I hate it.  I might even be physically able to do today what you wish for me to do, but if I know without a shadow of a doubt that pleasing you will mean for me later an incredible amount of pain, I must say no.  I'm no lazy.  I just hurt. 

I absolutely do not want pity.  There is no reason to feel sorry for me--life is not perfect, and life happens to us all. This is the hand I have been dealt, and I intend to play it out. I don't blame the world for what I suffer, I don't rally against God.  This is no one's fault.  Not even my own.

I do not crave attention.  I didn't decide one day that I was tired of living like a normal person, and that the means to a life of never having to work, having my whims catered to, having friends and family treat me special, involved creating symptoms no one could see under a microscope.  I loved my life the way it was; I was never depressed and I had plans. This isn't a cry for your attention.  It just IS.

I don't feel sorry for myself.  Why should I?  Things don't always work out the way you would like them to--this is one of those times, I can live with who I am now.  I may not enjoy each day as much as I use to, but I still live for each day, and embrace whatever I can get out of life.   Pain is my companion .. but pain is not me.

The truly hard part--if you can not accept me for who I am now, I am sorry for you.  I won't waste precious energy chasing after you, to cling to a friendship that probably wasn't as strong as I had once believed it to be.  I can not force myself to readopt who I was before and re-assume the same roles.  In this--preserving myself and my state of mind--I have to be selfish.  If you can not accept that I might not be able to contact you every day as I did before, or engage in the activities we once did, whether it was traing together and working out together, or just bowling, then do me a favor, and let's quietly part ways with no ill feelings.  My life is going in new directions, and for me that might not be a bad thing.  If the changes I have gone through disturb you, hold your criticism.  I don't need it.  I don't want it.

Life deals us all a bad hand occasionally.  This is my turn.  It happens.  I accept.  I hope you do too.

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A Letter  from Fibromyalgia

Dear Miserable Human Being,

Hi, my name is Fibromyalgia, and I'm an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran ...

around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.)Brain Fog.

I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma.

Well, anyway, I'm here to stay! I hear you're going to see a doctor who can get rid of me. I'm ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively.  In fact, you'll see many doctors who tell you ‘it’s all in your head’ (or some version of that).  If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills.  You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You'll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!

Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease.  Some of them will say things like "Oh, you're just having a bad day", or "Well, remember, you cant expect to do the things you used to do 20 years ago," not hearing that you said "20 DAYS ago"! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can't remember what you were going to say next!

In closing, you've probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People With Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.

Remember, I'm stuck to you like Velcro – and I expect we'll be together for the rest of your life.

Have a nice day!! (ROFL),

Fibromyalgia

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To my family and friends:

Fibromyalgia isn't all in my head, and it isn't contagious. It doesn't turn into anything serious and nobody ever died from fibromyalgia (thought they might have wished they could on really awful days!!) If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that's fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about my symptoms I don't want you to think I'm making this all up as I go along.

Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There's no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That's about the best I can hope for. Other times I may take a lot of medication and still won't feel any better. That's just the way it goes. I can't control how often I feel good or when I'm going to feel terrible. Lots of people have been cutting new drugs advertisements out of magazines for me and I appreciate the thought, but I've seen them too. Look at the list of side effects and the few symptoms they help in return. Even in the best studies those expensive compounds didn't help over half the people who tried them. No matter how happy the people in the pictures look, there's still no miracle drug available.
There's no cure for fibromyalgia and it won't go away. If I am functioning normally, I am having a good day. This doesn't mean I'm getting better -- I suffer from chronic pain and fatigue for which there is no cure. I can have good days, several good weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Weather changes can have a big effect on how I feel. Other times there may be no warning, I may just suddenly feel awful. I can't warn you when this is likely to happen because there isn't any way for me to know. Sometimes this is a real spoiler and I'm sorry. The sadness I feel for what my illness does to those around me is more than I can easily describe. You may remember me as a light-hearted fun loving person -- and it hurts me that I am no longer what I was.

Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it's jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have a hundred words for pain. Sometimes I just hurt all over like I've been beaten up or run over by a truck. Sometimes I feel too tired to lift up my arm.

Besides pain, I have muscle stiffness which is worse in the morning and evenings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may have to ask you to help me up. I'm creaky and I'm klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don't seem to connect the way I should. Hand-eye, foot-eye coordination, it's all off. I walk slowly up and down stairs because I'm stiff and I'm afraid I might fall. When there's no railing to hold on to, it's terrifying.

Because I feel bad most of the time, I am always pushing myself, and sometimes I just push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it's hard for you to understand why I can do one thing and not another. It's important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are real.

Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things. I have no idea where I put down my purse, and I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I'm still liable to forget them. Don't worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer's. New kinds of brain scans have actually documented differences in our brains.

I mentioned my sensitivities earlier and I need to talk about them again. It's more like an intolerance to everything. Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. Smells like fish or some chemicals, or fragrances or perfume can give me headaches and nausea. I also have a problem with heat and cold. It sounds like I'm never happy but that isn't it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don't know how else to say it. I know sometimes this means I will have to go outside, or out to the car, or go home to sit alone and that's really all right. I don't want or need you to give up doing what's important to you. That would only make me feel worse. Sometimes when I feel lousy I just want to be by myself. When I'm like this there's nothing you can do to make me feel better, so it's just better to let me be.

I have problems sleeping. Sometimes I get really restless and wake up and can't get back to sleep. Other times I fall into bed and sleep for fourteen hours and still be tired. Some nights I'll toss and turn and not be able to sleep at all. Every little thing will keep me awake. I'm sure that's confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.

All these symptoms and the chemical changes in my brain from pain and fatigue can make me depressed as you'd imagine. I get angry and frustrated and I have mood swings. Sometimes I know I'm being unreasonable but I can't admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I'm in one of my moods, secretly I'm grateful. I can't always admit it at the time, but I'm admitting it now. One thing I can tell you is it won't help to tell me I'm irrational. I know I am, but I can't help it when it's happening.

I have other symptoms like muscle spasms and pelvic pain that will take their toll on our intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It's very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you: I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.

Doctors Not So Smart

Some of my experiences with the doctors I've seen, whether GPs or specialists ... they aren't that smart after all but they're a real disppointment having gone through years in medical school, seen countless patients and yet give me stupid answers.  Due to the mysterious nature of Fibro, I have learned but am still searching for answers.  Researchers have proven that Fibro is medically recognised although many doctors are still living in the dinosaur times.  As far as FMS and HepC is concerned, I have done my homework.  So don't ever test or challenge me.  Whenever I see a doctor, I would mention about my symptoms with the hope of an answer I want to hear something like ... "Ms, you have Fibro or FMS".   The very first Rheumatologist I consulted was a disappointment because after examined me, she said I have no auto-immune diseases, so the verdict is:

 

• "I have normal muscle aches too, so have the nurse here" (But are yours never-ending like mine and doesn't improve with rest?)
• "Everyone of us here feel hot and cold too" \Not fluctuating regularly like me)
• "We have a high temperature in the morning too" (Isn't our body temperature is lowest in the mornings??? doctor???)
• "We have night sweats too when the weather gets too warm" Do you drench EVERY night in your sleep, upon waking up EVERY morning???)
• "We feel tired all the time too"(Do you feel tired EVERY morning feels like you've been ran over by a truck the night before?)
 

The next Rheumatologist I saw from the same hospital I paid as a private patient did made my money worth.  At least he mentioned "Lady, you're having fibromyalgic pain, try Gabapentin for a start with physiotherapy".

 

I was referred to the Orthopaedic by the A & E doctor for Tendinitis.  I received no treatment nor advice.  All I got was a shock ... "this is Vasculitis, your hands are ischemic and you may need to medicate for life, you are referred to the Vascular surgeon".  The Vascular surgeon said to me:  "This is definitely NOT Vasculitis or Raynaud's, you need to see a Rheumatologist".  He scare the shit out of me because if ischemic is present, I can't start Hepatitis C treatment because the Interferon is heavy and may cause vasodilation/vasoconstriction issues.  I was so worried about this whole plan would have to be postponed until a much later date.

 

My Hep doctor also had me referred to a Rheumy in the same hospital.  Thought I was supposed to make sure that the coast is clear before starting the devilish treatment.  The appointment was dated in November 2012.  But he started my treatment in June.  So I had the Rheumy appointment brought forward to September.  It was a long wait and almost impossible to get an alternative date.  I thought this doctor must be popular and wonderful but it was another disappointment that I feel so hopeless about our local medical field.

 

She did some basic examination for Rheumatoid Arthritis (RA) asked the same questions for AI and said my symptoms are treatment-induced.  I guess she was not attentive enough when I did mentioned all my symptoms started long before starting treatment and I am so used to the discomfort and pain that I have forgotten what it is to feel normal.  Doctors usually are not attentive enough when patients start to talk.  They tend to miss out on the important points to note.  She was not at all satisfied to have such a patient like me asking too many questions and having her repeat the same answer which was:  "Its due to HepC that causes fatigue and HepC treatment causes aches and pains".  So EVERYTHING is due to HepC.  Nothing was mentioned why I have persistent aches and other symptoms because she just doesn't know the answer! 

 

The only thing I felt quite satisfied was she is sure mine is Raynaud's.  So 4 doctors said its not but this one said it is.  At last my condition is recognised by someone!

 

My Hep doctor is no exception.  I have wanted to have him changed all along but too troublesome on the administrative procedures.  He started my Interferon Alpha 2a at 180 mcg and Ribavirin 800 mg/day as the standard-of-care therapy.  From the 2nd to 4th week, my WBC was dropping and Neutrophils were averagely low.  He reduced my dose to 135 mcg with the reason given that my WBC have been declining.  I requested him to give Neupogen instead but he said its not time yet.  So he reduced according to his personal experience on patients' well-being only.  He have forgotten the guidelines to achieve the goals of treatment, the reason for wanting to treat and that he should have given Neupogen if my Neuts were low enough.  So, it was not even at the level to be even excited about!  He even advised me to be careful not to get bleeding from cuts, wear masks in crowded places and stay away from sick people.

 

I went back to look up my literature and discussed with the support group members.  This doc was definitely over-excited about it and there was no medical necessity for a dose reduction.  I saw him the following week, showed him my print out that he did not adhere to the guidelines of the US. I nag and nag at him and demanded to be rx'd for the original dosage of Interferon Alpha 2a of 180 mcg.  I was prepared to give him a piece of mind and maybe complain to his boss if I was detected at 4th week.  So this is another medical stupid expert.
 

 

Almost due to have my 4th week PCR to find out if the virus is undetected.  Being Genotype 3, the first 4 weeks were the most crucial in this battle to eradicate the virus if not it means that I'm a slow responder and may need to extend my treatment.  I was a nervous wreck waiting for the results.  I was afraid that due to the dose reduction, I did not fight well enough to stop the virus replication or have 2 logs drop in viral load.  But because my baseline was low, I could possibly be even undetected at 2nd week!

 

I was so happy when my results were out the following week that I achieved RVR (Rapid Virological Response - undetectable at 4th week)!  I will stick to my 24-weeks regime with no extended treatment or side effects!

Fibro in a Nutshell

Having chronic illness is a journey

A journey with daily challenges
Working towards a better day
Making changes to what you used to do
Hoping for a pain-free day

 It is a painful journey
A road of no return
Living life is simply my reason
My hope and my motivation

Yesterday's gone and forgotten
Today's a brand new day
Another day of struggle
For tomorrow's a better day

---------------

Fibromyalgia is a real pain

It will zap your energy...right down the drain

Your muscles feel like they're tied in knots

You find yourself saying ... I forgot

You'll find yourself tired when it's time for bed

but stay awake counting sheep in your head

And in the morning when you climb out of bed

you're already in search of your first med

Through trial and error, you find a way

to get through each painful day

There will be days that tears are shed

but try to focus on good days ahead

Never give up, hang on to hope

One day at a time, you learn to cope

 ----------------


Don't give up

Don't give up
Cause you have friends,
Don't give up
You're not the only one,
Don't give up

No reason to be ashamed,
Don't give up
You still have us,
Don't give up now
Were proud of who you are,
Don't give up
You know it's never been easy,

Don't give up
Cause I believe there's a place,
There's a place where we belong

~ Peter Gabriel

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Fibro, A poem

Could you imagine being 20 years old,
30 years old,
And being stuck in the body of a 90 year old?

Watching your skin turn to hell and flake, away,
And your hair never cooperate anymore?
Seeing teeth trying to loosen and

Feeling like some days your eyesight was bad,
Or that your sense of time was starting to go?

Can you feel the agony
Of hips that don’t want to work,
But must work to get through a day,
Feet too swollen to put a shoe on,

And fingers too sore to do it anyway?
Necks that are too tight to hold up your head,
And backs curving under the strain,
Stomachs that can’t digest anything
Because the stress of a single hour grows too much?

And can you imagine sleep the only solace,
Only that sleep isn’t restful
And it isn’t kind?
Wake up with more pain then you went to bed with
And you don’t feel rested anyways?

Doctors don’t really help
And the other treatments too expensive to convey,
But each day passes with swift regularity
And no one gives you a break.

What pain is there without bruises?What skin irritation without a sore?
What sleep deprivation?
Just go to bed earlier and get more!

What stomach issues, just eat better. Mind over matter, make it work!
But when Fibromyalgia is the villain
Believe me, he’s going to make it hurt.

©2010 Jennifer Altherr, butyoudontlooksick.com

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If you could live in my body

If you could live in my body,
just for a day,
maybe you wouldn’t think
that I feel okay.
You might understand
what it’s like to be tired
by just trying to live,
just doing what’s required.

If you could live in my body
you might begin to see,
that a simple drug
won’t set me free.
If you could live in my skin
you’d learn to understand
that it’s not in my head,
nor was it planned.
I don’t want your pity
or to make you resent.

But I don’t need to apologize,
or have your consent.
I am sick and I’m tired
every single day,
and it won’t help to ignore it.
So listen when I say:
it helps when I relax
with a friend and some tea.
You can’t understand
but please, believe me.

Submitted by Beth Turner, © butyoudontlooksick.com

 -----------------------

“Please Don’t…”

“But you Don’t Look Sick”
Is an often heard phrase
To those battling illness
Invisible most days…
Having an Invisible Illness
Makes life so much worse.
As we are prejudged, misunderstood,
Not believed, and/or cursed…
What we experience each day,
Fatigue, symptoms and pain,
Is really life altering,

And a huge, great big drain…
Doctors, prescriptions and treatments,
Are now part of our life,
Costing more than we have,
And causing trouble and strife…
Because we are “Normal” to look at,
At least most of the time,
People think it’s Ok to treat us badly,
Or like we have committed a crime….
But the only crime we committed,
Was to get invisibly sick,
It just something that happened,
It’s not our fault we feel Ick…
We didn’t ask to be ill,
It wasn’t something we did
Not something we didn’t do,
We couldn’t have hid…
It’s just something that happened,
A totally random affair.
I am trying my hardest to treat it,
Of this I do swear…
But now you must realise,
That there is rarely a cure,
But we try what is recommended,

But each day there a fewer…
Please don’t recommend
Any remedies and/or cures
If it worked then we’d know
Of this our doctors ensures…
Please don’t think ‘cos I’m smiling,
That I am healthy and well,
It just means that I’m happy,
I can still be very unwell…
Happiness is just that,

A feeling of joy,
When you suffer long term,
You work hard to enjoy…
Don’t tell me you understand or know what it’s like,
Don’t pity me or exclude me,
I know what my limitations are,
Please try to understand, that is my plea
So Please we all beg you,
Don’t Judge us by looks,

But understand us and help us,
Don’t treat us like Crooks…

Shazinoz” submitted this poem© 2008 butyoudontlooksick.com

----------------------

Rainbow of Hope

I sit staring out my window again
Stuck in this room
By an illness that won’t let me free
I look out at the rain
And feel
Blue with sadness for
All that was, is and never will be
Red with frustration and anger
Hating the pain and endless days
Green with envy
Because everyone’s life has moved on
While I am stopped here since that fateful day
Yellow with fear
That this is the way
It will always be
Then he calls
Come look out this window
And I see
A rainbow stretched across the sky
The colors transform
Into Hope

Submitted by: Stacey Yount 2009, butyoudontlooksick.com

-------------------


I Didn’t Know…

I didn’t know back then that life would change forever. I didn’t know what pain was then. I didn’t know the sacrifices and allowances I would end up making. I didn’t know my hair could hurt. I didn’t know that I would have to give up the things that brought me the most joy because I just couldn’t do them any more. I didn’t know how my limits would change from one day to the next. I didn’t know I’d have to fight so hard for what I need.

I didn’t know I could be okay with wearing socks that don’t match. I didn’t know I could cry beyond the point of tears. I didn’t know how strong I could be until I was forced to be. I didn’t know I could live for weeks on applesauce and Sprite. I didn’t know I could get lost in Target. I didn’t know I could crack a joke and laugh in the worst of situations because I just couldn’t cry anymore.

I didn’t know I could lose what felt like everything and still feel as though I had everything I need. I didn’t know I could keep going past the end of my rope. I didn’t know that when I felt the most alone and exhausted, someone, somewhere would inspire me to fight one more time. I didn’t know I could sleep 20 hours and still be tired. I didn’t know I could fall asleep anywhere. I also didn’t know I’d regret it when I woke up.

I didn’t know that nothing beats stupid comedies or veggie tales on a bad day. I didn’t know just how much pain I could stand. I didn’t know how desperate I would feel sometimes. I didn’t know how much I’d have to learn. I didn’t know how much I’d have to advocate for myself because there was no one else to fight for me. I didn’t know how good fuzzy socks feel.

I didn’t know I could love God and hate Him at the same time. I didn’t know sometimes prayer would be all I’d have. I didn’t know some of my best friends would be people I’d never met. I didn’t know that I wasn’t alone. I didn’t know doctors could be wrong. I didn’t know that there were others going through this. I didn’t know there was support.

I’d say I wish someone had told me all of these things back then, but I do know I wouldn’t have believed them.

Article written by Staff Writer, Agnes Reis

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Pieces of Us

To be separated
Body and mind
Split between thoughts of love
And questions for the enemy
Yet they both reside
In the same body
In my body
There are no answers
Just community
A family of people like myself
Found here
Yet spread all around the world
Provide strength
To carry on
A life is still here to live
Memories of the past
Hurt, but bring vitality to the present
We may not look sick
And our struggle equals muffled cries
But we’re here to change that
Hand in hand


Written by staff writer, Annie Martin

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"Sticks and stones may break my bones,

but words can also hurt me.

Sticks and stones break only skin,

while words are ghosts that haunt me.

Pain from words has left its scar,

on mind and heart that's tender.

Cuts and bruises now have healed,

it's words that I remember."

-Author Unknown 

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My Hope For You, Those With Illness

by Chelsey Lawrence

I hope that you always look for the silver lining

Even when all the clouds do is rain.

Remember that stars are always shining

Even when the sky is as dark as pain.

I hope your spirit stays full of light

On dreary draining days.

I hope you always keep up the fight

To persevere in many ways.

Treatments can fail and symptoms return

And sometimes doctors don’t know what to do,

Remission can be hard to earn

That is what I hope for you

When you are feeling lost and all alone

And life is shaking hands with pain

I will be there to help your heart turn from stone

And show that all this can be of gain.

I hope you know that your trials have strengthened you

You have gained persistence and grace.

Your journey has left footsteps on a path

People can follow your inspiring pace

I hope you remember that tears can be blessings

They are a sign that you are still holding on

I hope you continue even when illness keeps pressing

The darkest hour is just before the dawn.

I hope that love and joy will help you cope

And that God will pull you through.

May you always fill up your cup of hope,

That is what I hope most for you.

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