A Description of Pain

A Description of Pain

By Katelyn O’Leary.

(Editor’s Note—Katelyn O’Leary, a frequent contributor to the National Pain Report, posted the following

on her Facebook page this week. We thought it deserved a wider distribution. We invite you to share

your thoughts in our comments section after you read it.)

#peterpan was always trying to catch his shadow. What I wouldn’t give to rid myself of the darkness that follows me….

You see this photo? It is a carefully constructed lie. Normalcy.

These days, I find it hard to stick to a routine. Showering, doing laundry, cooking – all of it has become a struggle.

My #pain is overwhelming.

Showering after a workout, or first thing in the morning, used to be my favorite routine. The hot water hitting my sore muscles, massaging my scalp with my favorite shampoo. The smell of my wildflower soap. But now the water hits my leg and I grimace. I force myself to wash my hair quickly. No more basking in the hot water – heat is pain. And pain is my ever-constant friend and foe.

But what isn’t a lie, what is the whole truth, is that I did dress up that night. I put on makeup. I did it. And for those of us with a #chronicillness, those of us who are #crpswarriors, these are our victories. We may not be defeating the enemy within, but you can be damn sure we are fighting with our lipstick firmly in place.

And of course, shimmery powder on our cheeks.

Peter catches his shadow and Wendy Darling sews it back on… who’s to say I can’t find someone to help me let go of mine? Or at the very least… learn how to cope with ignoring my shadow.

Because don’t we all ignore the shadows around us at dusk, when we are happiest and most content?

#crps #rsd #nervepain #spoonie #writing #fighting #fightingthroughthepain #inspire #pain #painful #warrior

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Authored by: Katie O’Leary

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I have CRPS and this analogy/ interpretation of pain is spot on. It isn’t just for those of us who suffer from CRPS but for every pain warrior out there and I’m so glad you shared it. Thank you!

Chaya

I had the spinal cord stimulator for a few years. It did nothing for either my fibro or sciatica pain. I have 4 fused discs and a fifth herniated one. I now have the ganglion root implant from St. Jude. Again, it does nothing for my pain. After the removal of the stimulator and the insertion of the new implant, I was in so much pain that I cried in bed for over 3 weeks. My pain was off the charts. Nerves do NOT like to be messed with! I am on MS Contin ( morphine) and 3 sleep meds. I guess the MS Contin helps somewhat…who knows…but certainly not nearly enough, and my sleep is horrible.

Susan Bond

I too would like to know where our rights are? Rights of humans who are in constant pain, unable to be given pain relieving medication because of the government’s need to control our lives! My husband has Dementia and I’m his primary caregiver. My day starts at 7am with me in tears because it’s so painful to move. My doctor refuses to increase my pain meds and has even restricted my muscle relaxers. I just want to lay down and die but as long as my husband is breathing, my life must continue. I agree that we, as a collective group, need to hire attorneys who will fight for our rights! It’s long overdue!

Dorothy. Irby

I’m in constant joint pain from RA. My doctor doesn’t write opiods and doesn’t seembto believe me when I tell him how I hurt.
I’m at my wits end as to what to do.

Kris Aaron

I refuse to cry! Instead, I’m angry — furious, even! — at government officials who falsely believe the “solution” to opioid overdose deaths is taking pain medication away from those of us with broken bodies.
I’ve become far more sympathetic to drug addicts, even though they “knew” what they were doing to themselves when they began using. They’re escaping terrible pain, too, even though theirs is often emotional and not physical.
I believe all recreational narcotics should be legalized like alcohol. People are overdosing right now, when legal opioids are nearly impossible to obtain. Illegal fentanyl is killing them; they’re dying thanks to the “fentanyl surprise” they don’t expect. Many addicts and users would still be alive if they knew exactly what they were getting, as opposed to taking their chances with cartel drugs.
Pain patients are suffering and seriously considering suicide because politicians and law enforcement are shortsighted and prefer to believe nonsense. The drug war is over. The drugs won, just like alcohol won nearly 100 years ago, after the US suffered through Prohibition.
And just like Prohibition, the “war on drugs” has created many more ugly problems than it solved: drug cartels, organized crime, an increase in suicide by pain patients, thousands of recreational users dead from accidental overdoses, and a population that has little respect for the rule of law, thanks to idiotic enforcement policies.
While we’re blaming Big Pharma for carelessly selling opioids, that same conclusion can easily be applied to gun manufacturers for accidental shootings, car manufacturers for traffic accidents and liquor distillers for drunk driving. Humans dearly love to blame anyone but themselves for their problems — but in this case, the problem of opioid misuse can be directly traced to lawmakers who believe voters can be won over by easy answers and useless policies that cause nothing but more pain.

Skeeter

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Misty Hoffman

Spot on Katie, I can unfortunately relate. Beautifully written.

Misty Hoffman

I completely agree with you Laura. This is government sanctioned torture! Patients that have been stable on the same dosages for years and that have used medication responsibly are having their lives taken away , myself included. I can barely think through the pain to type this. I am now mostly bedridden, which is hard to deal with because several years ago my PCP had me stable and I even thought I might be able to to go to law school part time (my goal before I became disabled 2 weeks after giving birth). All over the news people are running around saving overdose “victims.” It feels like addicts lives matter and ours don’t. Prescriptions are down but overdoses are up, and that’s because they’re overdosing on heroin and illicit fentanyl. Now pain patient suicides are up,but big govt doesn’t seem to care. It’s all about looking good politically and money in my opinion. Kolodny probably got grants for his chain of rehabs. What about our 14th Amendment rights? The ADA act? We need legal representation… however, I don’t think anyone will take this on unless it’s very lucrative for them. I thought about starting a GoFundMe account for legal representation for pain patients, as well as to help legitimate doctors being persecuted. I know that as pain patients who cannot work money isn’t abundant, BUT, there are MILLIONS of us and many of us have loved ones who care about what is happening to us. Even if each pain patient could donate $5…and their families and friends could donate $5. I don’t know….just a thought…. let me know what you, my fellow CPP’s, think. We need help before it’s too late for more of us…. I’m barely hanging on because of my family, especially my little boy.

David Hickle

I say that the entire health care system failed society because of government and humanity’s fucking stupidity on drugs and medicine witch that failed me and ruined my life and I hate you all because I’ve lived with and in pain ever since I was 7yrs old I’m 40yrs old now and all I want to do is die from illness and to never again eat or drink anything

nana

I hide me.

I don’t make phone calls anymore. They have become “confrontations.”

I don’t describe why I was grouchy anymore. Another “confrontation.”

I don’t see family- you got it. “confrontation.”

No doctors appointments-tests-ultrasounds-drives-leaving our home…all a confrontation in one way or another.

Oh how I understand what you wrote.

I am so tired.

LAURA

The 14th amendment of the U.S. Constitution states, “All persons born or naturalized in the United States, and subject to the jurisdiction thereof, are citizens of the United States and of the State wherein they reside. No State shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any State deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws.”

we gotta at least VOTE the poiliticians OUT!!! OUT!! OUT!!!

....LAURA

IF I HAD MONEY I WOULD HIRE A TEAM OF LAWYERS TO SUE THE FEDS FOR MAKING MY DOC CUT MY PAIN MEDS. i AM NOW A CHAIR VEGETABLE. THEY HAVE ALIENATED ALL OF US BY BREAKING OUR CONSTITUTIION ….THE RIGHT TO LIFE LIBERTY AND HAPPINESS.THEY HAVE KILLED ME. I TRUELY BELIEVE THEY HAVE DONE THIS TO GET US ALL OFF AID.
HOW WILL THEY PAY FOR THEIR WARS AND THEIR WALLS?
PLEASE FORGIVE TYPOS MY FINGERS ARE DEFORMED FROM ARTHRITIS. THEY SHOULD FEEL ALL OF THE PAIN I FEEL FOR A WEEK. .

GODSPEED AN PEACE AND LOVE TO US ALL

PS I DIED LAST YEAR AND THERE IS NO PAIN IN OUR NEXT REALM.

Brett H

This is what I have learned by thinking about why anyone would deny that someone is in pain. The reason is that some humans are selfish beings especially if they are in your family unit or at work. The reason that they lash out at us is they are afraid of going on a journey with us. They are afraid that they might have to lift a finger to help us. Weak and cowardly they are. Humans never lived this long 300 years ago. Yet why do so many people have illnesses and Genetic Diseases. We keep breeding these defects into Generations of our offspring. Perhaps their should be help choosing mates so these things do not keep propagating throughout time so humans are bred stronger and healthier. I would not wish this Fibromyalgia pain on anyone yet one yet I know at least one of my Daughters has it.

Megan

Before I discovered websites and blogs…I felt so alone.
I am 44 and have lived with chronic pain for over 20 years. Pages and pages of hospital tests and being pushed from dr to dr.
I have lost friends. Intimate relationships are embarrassing and tiring. I always feel guilty for not “doing enough” or “being enough.” I try not to complain about it but just wrap up every joint I can with a brace and head off to work like it’s my armor.
Sitting still is a death sentence to me ….even though every movement causes pain.
The thing about chronic pain is….THERE IS NO ESCAPE. I don’t think most people fully understand this. Nothing helps. We are in pain whether we are sitting or standing or laying….or whatever! It slowly breaks down your soul. Anxiety and depression become so familiar that it becomes “your normal.”
I constantly walk a balance between telling people I suffer to trying to hide it. I hate it when people feel sorry for me…I don’t want pity….it makes me feel like less of a person. But I can’t hide my limp or the grimace on my face. I don’t want anyone to treat me differently….but I am different. Always living in a “…but you don’t look sick….” world with people who tell me- “yeah…just wait until you get OLD.” UMMMMmmmm. No thanks. I often daydream of dying. Don’t get me wrong…I am in no way suicidal….but I don’t have kids….and I don’t think of it as dying. Would like to call it “a sweet release”. I think most of you understand what I’m saying. Dying – although it is a long way off for me – will be my only relief.
Chronic pain changes everything in your life.
I stopped trying to fight it…and started focusing on trying to live WITH it. So here I am. 60 lbs lighter….clean eating….positive…hopeful.
Like she said… WRITING and FIGHTING.
Cause sometimes…that’s all we have.
If you woke up today…pat yourself on the back. You are a warrior and you have an army of people who understand.

Kapri

So now I just say “I want to stick a fork in my eye” instead of saying that I want to die because of the pain. Should I say the truth, my door will be kicked through and I will be labeled as crazy after I’m committed to the psych ward.

Denise

Amen Sister. I mourn for my life before….

Renee Mace

I can only shower once a week and when I do then I suffer from it for a week to only have to start it over again.

Sandy Miller

I completely understand and feel the same way! I’m so tired of the hurting, burning, aching, stabbing pain (and more), so tired of not being able to do anything, I don’t even care anymore. And, this is not the ME I use to be!

Katelyn O’LEARY you have a beautiful name, and I think you are beautiful! but I can see the pain in your eyes, and I think they do show NORMALCY of how you are a fighting everyday to be you, they tell me you want help, the help that should be and was available to you (we) they tell me that you don’t know what you did to not get help, and your eyes say l Katelyn O’Leary could take a picture with normal NORMALCY if i didn’t live with all this excruciating pain day to day minute-to-minute I’m so tired of explaining it to everybody!
you’re eyes say I HURT !!!

I really hope someone that is important See’s what I have in her eyes, and I pray that everyone that have eyes like Katelyn, that also suffers from living with pain every minute, that WE all get our med’s that were working for us back without any more guilt that has been laid at our feet for something that we we’re no part of………

Thanks for the post, Geoff. That’s such fine writing all I can do is shut the hell up and thank Katelyn for sharing it with us all!

I may never look at a tube of lipstick again, without being reminded that someone like Katelyn may have struggled to put it on.

ElizabethR

The natural loss of ability, joy and quality of life that can come with aging is magnified greatly by long-term, often unrelieved pain. My body pretty much “died” about 2 years ago, but I didn’t.

Katie Olmstead

Just received a sweet note from a younger friend (late 30’s) who said that, in his life, he has always been able to find a fix for what was wrong in his life. I wish it were so. I, too, spend a lot of time hiding my pain and trying to appear normal. I want to appear normal. I want to be normal. I am grateful that I can still enjoy a scalding shower; it is sometimes the only thing that can temporarily break the pain. I function/I struggle/I hope to find some minor reprieves. I know I am not alone.

T J

So the shadow is what i would wish to be, unfeeling,aloof, and yet predictable in it’s mimicking , expressionless, yet formidable dark and linear

Diane Mary

I am 50 years young and dealing with sever chronic pain,very hard to even get out of bed in the mornings.thank u for sharing

karin l bendel

I am sorry for all of us that live with pain as our constant companion. We never know what it is to wake up and just be pain free. Can you imagine that? Perhaps for a second I can feel that way or remember. Mostly, though, pain comes rushing in. For me, it’s pressure as if I were wearing a helmet on my head and it is very tight. I have this all day long. Some bad days it makes my front of the neck feel strange too. Thus far, nothing helps unless I wanted to do heavy duty pain meds. I don’t. I try natural things, keep busy and distract myself. I also drink two measured out glasses of wine each night to relax. That helps for a brief time. I am worn down from pain always pressing and inserting itself into my life as all of you are. How can we sidestep the awareness of what our pain receptors are saying? I don’t have answers and am searching and that’s why I love the sharing of this group. Thanks for listening,

Karin

Susan Domokos

My guy of ten years called me a fake last night…that I’m trying to use him to do stuff I don’t wanna do..like carry laundry down 2 flights stairs…or clean the tub…on Jan 15..I was fitted with a back brace increased pain medicine and a muscle relaxer…all because of a crappy spine MRI and a self made symptoms drawing…listen..I can’t walk any distance (like the mall) without my hips feeling ablaze with pain..and I gotta stop and go..stop and go…Geesh…never mind…nobody really gives s damn…this is my lot in life and I can only talk to myself and cry to myself…this is so [edit] up…I’m sorry…

Karen Lintner

Its so hard to make my Dr understand just always wants to give me band aids.spinal.nerve.pain is no joke.

chuck darrah

That is nothing but the truth,my pain also is unbearable and we have nowhere to go for relief.We exist minute by minute, hour by hour, day by day.Those who love us , suffer because we suffer and they are helpless to relieve our pain.Our doctors are only worried about what the DEA thinks never considering our welfare.We have spent our life savings trying ” alternative pain relievers ” which are a hustle for those of us desperate for a replacement for the only thing that works for us; opiod medication.For 19 years I have been fighting pain that never goes away.Only a miracle can help us now but we continue to hope the insanity and inhuman treatment will somehow stop.Sadly this shows what humans are capable of doing to their fellow humans for money and power.Keep fighting everyday brings new hope that this will be the day.

norine jarrell

I no just how you feel I have pain 23 out of 24 hrs a day try to make myself shower 3 days a week I feel like I just want it to end I can’t take it anymore it’s hard knowing this is what the rest of my life will be. Sometimes its just not worth it anymore I’ll be praying for you

I can so relate

LaDena

Beautiful words for something so hard to describe. My thoughts and hopes of strength are with you. I too deal with pain and the dark depths it can take your soul to. Peace and healing.

So very beautiful, so very true. Your story Katelyn gives me cold chills, and also reminds me of my own. May God bless you always and give you constant help with your shadow.

Judy Toth

Some of us with intractable pain can not shower, put PN the lipstick or leave their home. I was a marathoner, national level dog agility competitor and general athlete. Now I live in a hospital bed at home. Until 7 months ago I was homebound for years but get my own food and drink , go to the bathroom and even play with my beloved Sheltie 10 minutes a day. I have survived one serious suicide attempt where I was a Glasgow 3 coma for 4 days. Yesterday I again had my hopes for medical help dashed from a dr at a prestigious hospital. I have started The process of going to Switzerland if I don’t get help in the next couple months. 7 years of suffering from Adhesive Arachnoiditis and pudendal neuralgia are enough for me.

Daniel F. Maloney

Every word,the absolute truth concerning total body nerve pain.

Barbara Snow

Beautifully expressed. Thank You. I rarely shower any longer, don’t even bother trying to look good. The pain has finally beaten the crap out of me and won.

Jessica

Thank you for sharing! I am 36 and have realized the simple things become not so simple when you live with chronic pain.