How Pain Changed My Life – and Me

How Pain Changed My Life – and Me

By Katie O’Leary.

I used to be the type of person who would tackle a problem head-on, with the kind of strength and perseverance that demonstrated my desire to survive no matter what. I knew what needed to be done, and I would neither hesitate nor deliberate on my decisions.

But so much has changed.

I wake up in the mornings, terrified out of my mind. Wondering if I can live my life the way I used to. Wondering if I can rebuild my life, drive my car, be a contributing member of society, be something other than SICKLY.

Katelyn O’Leary

I have to force myself to eat something as I dress and brush my hair. I try to find that routine. I try to step outside my comfort zone. I sit on my bed, dressed and shaking as I tell myself over and over – “You can do this. You can go out there and do this. You can walk. You can be there. You can start again.”

The fear that grips my heart is overwhelming. The pain in my leg is ever present and pulsating, like a second heart, beating constantly in my flesh – reminding me every second what I have to lose if I have a flare or if I slip up. What if I can’t return to the world? Pain has defined my life for over 3 years now. I have lived by it, suffered by it, and nearly died by it. It has warped my mind, spirit, and emotions into believing that I cannot do anything. I am no longer capable of achieving the goals or even small tasks I used to be able to do. Pain can convince you of the most incredible lies.

I want to live beyond my physical pain. I want to walk in a crowded square and not feel my entire body tense as I see hordes of people, terrified that they will bump my leg. I want to go to a busy café and not hold my arm horizontally away from me to divert passerby from hitting my hip. 

But I don’t know how. How do you rebuild your life when your disease has no guidebook or no end in sight? When those around you have no answers or medical advice beyond a shrug or, “Well we don’t know when you’ll get better but maybe soon?”

That’s the problem with surviving – you forget how to live.

And so I wake up every morning and I force myself to get up and follow a new routine. I get up outside my comfort zone. I’m terrified. I’m scared out of my mind. Every day. I do not know if I can keep it up for a long time or forever. But I have to try. I have to take a walk out that door. I tell myself, “You can always walk back in, regroup, and try again”. For now, all I can do is be thankful I have a door. I have a door, and I have arms to welcome me back if I need them.

And for now that is enough.

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Authored by: Katelyn O’Leary

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Michelle Stevens

You are stronger than you know. You will learn more and more on this journey. Over time, you learn to live with intention. Making time for what’s most meaningful to you at that point in your day. Coming to terms with the changes are difficult and understandable. Take one day at a time, seek supportive services, rest when you need to. It is so important to recognize when your body needs a rest, give it one! Believe me, there are plenty of days I’ve been in bed wishing I were out enjoying myself, I still do, but, I won’t dwell to much. I read a great book or watch a great movie. Try not to make time spent with family and friends about your illness, that’s what therapy if for. Oh and forget about the explaining, convincing, or apologizing. It’s just too damn difficult living with chronic pain, having so many unknowns, the last thing you need is to explain it. You are your best advocate. Blessings to all.

Katelyn O'Leary

Thank you all for your wonderful responses. I wanted to tske a moment and respond to Lynne and to anyone else who is in a similar situation. I know all too well how pain can make us want to give up. Don’t give up Lynne. From what it sounds like, the past few months have been so hard on you. And you deserve better care and quite frankly – f****** better doctors and medication. You have allies in your corner and please remember that the world will be a dimmer and darker place without you. Take it one day at a time – but don’t give up. You deserve so much more. But baby steps and one day at a time.

Peace, love, and hope to all of you and thank you for reading this. I do this for you – you inspire me but you also remind me every day how importent it is to raise awareness.

Cindy

Oh Terri I’m so interested to hear more about your pain psychologist technique!

At my last psych appointment, I asked if pain triggered bipolar episodes and apparently it can. So yet another reason to stay calm and keep ahead of my pain as much as I can. I too have multiple pain related illnesses… too boring to list

I find the alternative stuff sometimes works a little but my neck spinal damage has actually pulled my arm into an awful position with pain and shortened it! By 1/2 inch so far. No amount of meds or Ben gay are helping that sucker

Peace to all

Thank you…beautifully written. My life is almost exactly the same…may we find strength to carry on. God bless you and everyone here at NPR.

Cindy Deim

I’m so sorry. Pain can be relentless. I’ve had pain for about 20 years. Pain medication helps me a lot. But you know how that’s going these days. I hope with all my heart something changes for you.

Kathleen Shelby

I was struck by the phrase “Pain can convince you of the most incredible lies”. How very true. I lie here in pain convinced my family is against me. It will mess with your head. The pain and the meds. It is a case of can’t live with the meds can’t live without them. Thank you.

Maureen M.

HI Katelyn, you look so different in that pic! I relate to this post of yours for sure.
Lately I’ve been feeling defeated a lot of days. I’ve been tired of the daily fight. The fact that there is no end in sight.
Aside from my chronic spine injury/surgeries pain related issues and CRPS Ive now been diagnosed with Systemic Lupus. Thcstruggle has all become so very overwhelming. But, I know I will come around and have better days of acceptance at some point in time… It’s just so difficult.
Keep strong Warrior… I send you love and caring hugs. Maureen M.

Lynne Hall

K. O’Leary’s post is by far the best I’ve seen. It made me feel a little better knowing someone gets it and states it so perfectly.
Unfortunately, I have no arms to welcome me into. I am totally alone in my fight. Everyone suffers differently, I was actually living a ok life, until the government got involved in treating all chronic pain patients the same.
We are different, I have adhesions from over 20 surgeries that began at age 11. I don’t know the freedom others have enjoyed.
My friends, few as they are, thought when all this mess of doctors dropping people first started that, ok they must have done something wrong.
We believed that doctors would continue to treat us, the ones who have been told we are not addicted, we are dependent on opioids to function. We thought they would investigate doctor charging large amounts of cash only payments and over prescribe drugs.
Boy have we all been fooled. I thought the constitution protected us, not harmed the ones who have tried all types of treatment before resorting to opioids.
My dread fears have come true, I am going to have to start all over again and pray that the government will hear our cries and untie our doctors, that take our insurance. They aren’t getting rich on $90 visits.
I am back to sleeping sitting up, after a few glasses of wine, only to wake with my butt hurting too, as well as my head. But I feel like my insides are being pulled apart again.
I’m told surgery to remove them will not happen, because they will only grow back and be worse, if I survive the surgery. The last one in 84, lasted over 8 hours and I almost died then.
Now I wish daily that I had. The new laws have left me in a level of pain I never believed I would have to experience again. I can’t take care of my basic needs. I wear the same clothes for days, then cry thru the process of a sponge bath and putting on clean clothes.
I was a determined person once, I fought for other, volunteered in the community. With my meds, I was never in a fog and was President of the local Jaycees as well as the PTA, serving two terms in each. Now those are memories, of who I was up until 6 months ago.
Now I pray for help, or to just die. And most nights I sit alone drinking my wine, which I never did before, and think how I can end my life and not hurt or kill someone in the process.
I wish I had your courage, but I don’t. And I really don’t think I’ll be here next year, I’m passing out from pain! Someone help us

Margaret Fought

My heart goes out to you with all the pain that you have I understand this I live with chronic pain fibromyalgia two torn rotary cuffs that can’t be repaired because I have numerous allergies a cracked spine I’m in pain all the time and one day they took them away and tried me on 2 a day and of course I took them because I was in so much pain then I ended up in this town which is 900 and had to run to Sioux Falls South Dakota they saved my life but we only have two pain doctors around Aberdeen they’re both women they’re both cruel and do not care about people in pain at all.. so I have a substitute you put under your tongue which makes me throw up every morning can cause heart attack and dementia tightness in your throat and I see no way to get any kind of pain relief I have to quit taking this then just lay in bed I’ve gained 45 lbs everybody wants me to walk but it hurts when I walk 90-minute massages do help but they’re expensive I don’t know why they don’t punish the drug addicts and leave the people who have documented pain it makes absolutely no sense.

nana

Thank you.

I feel the same. And it is making me angry.

Katelyn O’Leary I am so sorry for your pain you are in. I know it well. I cant see this is legal, what the DEA is doing to all of us. I want to know who made them judge and jury to out medical needs. Somehow, we need lawyers to fight the government for us. Now we will be dying at a hight rate of speed after punishing those of us who are in so much pain. We will be dying at a higher speed than the overdosing people. The officials turns a blind eye to that of course. As long as they make their point with pain medicines. They dont care and those of us who dont have money for surgeries, we wont see any help from them. Im wondering if they want us really old and those of us in severe pain, if they want us gone. Also, why is their a survey being done on people who take opides. Do they do this with peoples uses of vitamins, over the counter antacids, etc… I am so sorry to get wound up on everyones comments. Katelyn if I could I would put a stop to this nonsense. I can imagine your pain. And those who are suppose to run this country are failing us. They seem to pick on the weak people of this country. I know I get to rabbling on. This is what my pain has caused me. I feel for all your pain on this site. I pray God sets in and halts this at once. I believe God is seeing just how far our systems will go before he needs to intervein.

Mary W

Katie, your story about pain is well articulated. But a question: how was your leg injured? Or do you suffer from a tumor? What caused your leg pain to start 3 years ago?

Steven

I’m so sorry about your pain of 3 years. I’ve had pain Beyond imagination or 18 years. There was even a time not so long ago prior to January 1st 2014 when the Vicodin formula was changed and would no longer work longer than 3 weeks for me after working beautifully for the previous 14 years. I believe it would still be working beautifully if I had some of the old formula unfortunately I was too dumb to put up a stock. Sadly, today the pain patient is treated 2 well I guess you better make friends with your pain from his doctor while his medication is reduced another 15% per month. With a hereditary condition that’s worsening there is no way that I could possibly get by on there mandated 90 m m e and thereby no one wants to talk about the obvious conclusion. We all who are still left with pain have good reason to be scared. Make sure you have the Blessed hope of Glory in Christ Jesus. Amen

Neldine Ludwigson

I certainly relate to the ever fiery leg. Sorry.

Ronald M Corbin

Thank you Ms. O’Leary, this article hit home for me today! I will try to step out of my comfort zone today.

Terry

Unfortunately your story is not unusual Katelyn.I can relate to everything you are going through. I’ve had had 19 surgeries on my legs, they removed my kneecap on my right leg because it was crumbling. Recently, in the past 5 years I’ve probably had 7 or 8 major surgeries on my legs. My last one was May 30. So that’s a partial story of the pain in my legs. I’ve developed CRPS as a result of all the surgeries also. I broke my back in two places, I’ve had multiple dislocations, 15 broken bones, plus a miriad of other injuries, arthritis in 90% of my joints, and there’s more but you get the idea. I guess what I’m trying to say is that we, as chronic pain patients, have to find new ways to live a “normal” life in spite of our pain, we have to try different things to alleviate pain even if it’s only helps 2%! The government has taken away our meds and to them we are just drug addicts. I have tried everything to help my pain, I take 2 meds for depression and anxiety, meds for my Raynaud’s disease, (circulation problems), an anti-inflammatory, Ritalin for my ADHD, Percocet and Oxycodone for the pain, and yes my pain meds have been DRASTICALLY reduced, Lunesta at night to sleep, I have back and leg braces for support and I also take 1 Tylenol arthritis, extra strength every day. It took years to figure out what would help me, the psych meds help keep my mood pretty even and make my life tolerable. I also see a psychologist. I have just recently switched from my regular psychologist, who is awesome and saved my life, to a chronic pain psychologist. I was very skeptical at first. She has been teaching me techniques on how to reduce my pain. The first time we tried it, my pain was 100% gone!!! It lasted 1 hour exactly. We will repeat the same exact process every visit until it becomes second nature to me and I can use the technique on my own to alleviate pain no matter where I am or what I’m doing. So obviously I am super excited to get this technique perfected to the point of having pain relief most of my day. My point is that we as chronic pain patients, have to explore new or different methods of alleviating our pain, because the days of taking opiates for our pain is gone FOREVER. So don’t give up, keep on trying to improve your life, even if it’s 1% at a time, it’s going to be a combination of things that gets you your life back!!! God bless you all.

Jerry Mangan

Im in the same boat as you, suffering from rsd, my pain is horrific ang beyond mentally challenging, i have good doctors who treat my pain the best they can.

Robert Stelzl

Thank you, Katelyn. You so eloquently and succinctly say what I have been trying to for the last 3 years of my life.