Chronic Pain, Part I

I've been very hesitant to write this two-part post, but I've decided to forge ahead even though I'm sure I'll get flack about it.  I'm writing it, fully aware, I'll lose readers by doing so.  

I really hope you'll take the time to read it even if the worst pain you've ever experienced is a stubbed toe.

After all, how do you know, really know, it won't be about you or someone you love someday?  (Remember, I had a perfectly "normal" life until a man ran a stop and totaled his car into mine.)

I'm writing this post as a layman, not as a medical expert.

I'm writing this post based on my experience, post car accident/post eight surgeries/post being disabled.  It also incorporates information explained to me by medical professionals I trust.

I'm writing this post in the hope it will bring understanding to many people who don't understand.

Because ... so many people don't understand.

And yes, that even includes many of my own friends and family members.

I recently got a lot of very supportive comments and individual emails when I wrote about experiencing a particularly brutal pain flare up I've been going through.  I truly appreciate them, and the thoughts behind them, so much.  (I'm relieved to say I'm finally improving from this particular pain episode.)  

After writing the initial post, I also got some pretty insensitive/calloused/rude emails from people who clearly don't understand chronic pain, but like to assume they do.  Some of those people like to send emails with fake names and fake email addresses.  (Really people?  If you believe it enough to write it, own it.)

I took a total of about 30 seconds to make this chart to show you what my pain would look like if it could be graphed.  Zero would be where a "normal" person would hang out most of the time.  Six is where a person lives who is awakened at night because their pain is too severe to sleep.  Level ten is the worst pain imaginable.

For a long, long, time (years) I lived at Level 9-10.  

It was the most horrible thing imaginable.

Normal for me now is a pain level between 6 - 8. 

Thanks to Dr. Painless, I now sometimes sleep through the night with the help of drugs.  Prior to beginning treatment with Dr. Painless, I hadn't slept through the night in over four years.  Oftentimes, even with drugs, I still don't.  

No, I don't suffer from insomnia.  

Yes, I do suffer from severe chronic pain.

Do you have any idea, putting the despair of living with constant pain aside, how impossible difficult it is to function, long-term, without sleep?  

What I'm trying to convey to you is that a good day for me is pain at Level Six.  And yes, Level Six is a pain level worse than the majority of people will ever experience in their lives.  Those who do experience a Level Six will usually only experience it for a very short period of time, perhaps for a night or two after a surgery.  

I've had to learn to live with Level Six (or higher) being my constant -my norm, every day.  Yes - not being able to sleep, because my pain is too severe, is normal for me post-accident.  (And if you're reading this Dr. Painless, thank you for making sleep possible for me some nights now, even though it requires drugs for me to do so.)

When I have a "flare-up," my pain level literally goes through the roof.  Sometimes it escalates quickly, and sometimes it escalates over a period of 24-48 hours.  Regardless, it becomes completely debilitating.  The pain chart only goes to Level Ten but when I'm at Level Ten, I'm convinced I'm really at a non-existent Level Fifteen because ohshitithurtssomuchcan'tsomeonepleasejustmakeitstoprightthisminute.

Level Ten is when even breathing hurts.  Level Ten is when I'm curled in a ball, concentrating on forcing myself to breathe, and waiting ... waiting for it to decrease even the slightest bit, quite possibly to Level-Nine-And-A- Half.  Level 10 is when I'm perfectly quiet because the pain is far, far, beyond tears.  

Level Nine and/or Ten is also when I might bite your head off if you look at me the wrong way or start telling me how I should feel or what I should do about it.  (Dr. Painless is the exception; he gets paid extremely well to do exactly THAT.)  If you're ignorant enough to insinuate I'm responsible for feeling such anguish, you will receive death stares from me even if you're hundreds of miles away.

In other words, if you aren't the one experiencing Level 10 pain,

And if you aren't my personal doctor,

With five years worth of facts regarding ....

My initial injuries,

With detailed knowledge of what was involved in all eight of my surgeries,

With intimate understanding of my permanent disability,

And extensive understanding of my bionic arm/shoulder/electrodes/abdominal generator,

Along with, pervasive knowledge of the instructions I've been given regarding what activities I should, and should not, do in my daily life,

Not to mention, an in depth knowledge of all the types of pain medication I'm on ...

Then you have no business telling me how I SHOULD feel or what you think I SHOULD do or why you feel it's MY FAULT I live in pain.

I'm sorry if that sounds harsh, but I'm really not.

I share my story on the Internet because it helps me to write about what I'm going through.  Writing is therapeutic.

I share my story because it helps other people, who live with constant pain, to know they aren't alone.

I share my story because it helps thousands of people increase their knowledge about chronic pain. 

Support, kindness, love and good intentions are always welcome.

Unconstructive, negative bullshit is not.

You can find Part II of this post by clicking here.

© Twenty Four At Heart

Comments

[renata]

I dont know how you do it, like you said 6 is bad enough, we give strong pain relief post op patients at this level. I had some severe pain from migraines for 3 months straight, i thought i would go mad, but found a neurologist who prescribed some low dose tricylic antidepressant which has a side effect of pain relief, which worked thank god. It ended up being a neck problem caused by strain from lifting, which flares up sometimes. I hope you find some relief, i will say some prayers for you. xx

[tonya cinnamon]

gives you hugs.... sometimes even the most callous of all people really have no clue.
chronic pain makes a person feel like reality is no more at times.

(question though no offense, is there a way to cut the nerves to give you relief for a long bit, i think i asked you this a long time ago . they do this to my sis 2 x year in her back)

[Yvonne]

I know I can't do much to help your pain, but know you are in my prayers and I am sending my love and support throught the many miles away I am in Texas! I can't imagine living with that type of pain daily. I hope you can find some relief soon.

[Suzanne Young]

Wow! I can't believe anyone would even have the nerve to say something like that to you. Frankly, I think you would be better off if these ass-clowns stopped reading your blog if they have that kind of attitude...AS IF THEY KNOW YOU! And the fact that they made these comments with fake email addresses is just abhorrent. Keep up the positive, fun, and informative emails and forget these losers.

[Jenny in MN now AZ]

You actually have inspired me to keep going and to keep trying to find a way to enjoy life. Your stories and sharing remind me of how lucky I am that I can have a level 4 pain day...that would be one of my good days! I'm blessed.

Those who send you the negativity have not lived with the chronic pain or an injury that will never go away. It is hard to not take a negative comment personally but try to remember that those who are saying such things - truly do not understand or have experienced the hell you live with everyday.

I've spent hours, days explaining the pain and hoping for a glimmer of understanding about what I can't do. I get sad when I realize - no one will 'get it' unless they go through it.

I hope you start getting a bit more relief very soon. I'm ramping back into high levels of pain again, so your post hits home big time for me. How I wish for one day of not feeling the nagging, loud pain my body is in! Just even one day... For you- I'm guessing you would be tickled with even one minute of complete relief. Hugs and hope flowing your way.

[Lori]

I am so sorry for the insensitivety you've experienced along with the ignorance. I am convinced that unless you have lived with chronic pain for an extended period of time you cannot possibly understand.

In a couple of day's it will be 9 years since the assault and thus living in constant pain. I have close friends and family members that are clueless..until they have experienced pain whether from hurting their back or migraines or whatever and then they call me up and say "How the hell do you cope?" When my husband had a triple hernia this past winter his empathy and understanding for me increased but his pain has ended so he even cannot truly "get it" because his pain went away.

Pain affects me differently each day...some day's I can barely function let alone think but because of little one's I have to push through but most things that were suppose to get done don't get done...then other days' I will have a lower level of pain and will get more things done and over do it which puts me in a sorry state the next day...or on a good day I will agree to go do something on another day but that day comes and there is no way possible for me to go do it.

I am so thankful that you do share your story(and I hope you don't stop) because it reminds me I am not alone but most of all so that more people can be educated about pain and it's affects on our lives. Thank you Suzanne for having the courage to speak out! XX

[Pam]

I'm so sorry! I cannot imagine what you go through 24/7.

I'm sorry that people think they can judge you on your pain. Why wouldn't they just quit reading??? Does it make them feel better to write something mean?

Take care,
Pam

[deb]

People are quick to judge and the worst are those who thrive on feeling superior. I sometimes think there's a special place in hell for people who are cruel to people in pain.

[Vertigo B]

I injured my back on 4/1 and have been in pain ever since. A few weeks ago I found out I had a bulging disc, yadda, yadda, yadda. I brought this on myself by not working out, not losing weight, etc.

I think of you every single day. I admire your ability to be so funny and engaged in life when you have this other thing. The pain (and believe me, I have nothing even close to what you have) is exhausting, depressing and always there, but you have a sunny disposition and a grit that is truly amazing.

If other people can't let you vent when you need to, f*ck 'em. You do what you need to do.

[sandi]

I love you. I think are you amazing and looking fabulous for being in pain 24/7. I seriously don't know how you do it.... the pain patch on your arm is quite cute too, sad as hell but adorable.

I am here if you need me. especially if it involves kicking someones ass.

[Jan]

I can't even BEGIN to imagine what kind of ASSHOLE would email you and tell you that your pain is your fault. I'm sure they can't begin to imagine what your life must be like, to say nothing of what your pain must be like, but this excuses out-and-out cruelty? What small-minded, mean-spirited cretins they are.

Just for the record, I love ya, too.

[Missy]

Well said 24. Look how you gave a forum to your readers to express their feelings about being in pain as well. I think you provide a public service and we salute you for that. And like Sandi said, you look fabulous for being in so much pain and continue to pursue activities that bring you joy and satisfaction. Good for you!

[Rachael]

Suzanne, I have an inkling of what you live with- just a bare bones grasp. I had a pain crisis about 9 years ago, disk degeneration disease in my lower back, that compressed on the nerves, sciatic and others. I did go to a pain clinic for about 8 weeks but it was 6 weeks before they had an available appointment and I went through so much Vicodin during that 6 weeks the pharmacist was starting to look at me funny every time I filled a script. I lived with level 8-9 pain for about 8 weeks total, and after that it gradually (over about 6 months) subsided, with the help of several lumbar injections and 3 months solid physical therapy. I have never taken Vicodin since, and I have a small idea of what you are going through. I had a name for my pain, Shark Bite. I still remember thinking of it as going through life, with a shark attached at my hip, through the bite of all those teeth. I would even be surprised to look down my side and see a perfectly normal looking body- no shark attached? Cuz... shark bite IS there!

I'm rambling now... just wanted to say I feel ya, a little bit. Hugs.

[Judi]

You are telling your story. No one else has lived it and has a right to tell you how you "should" feel. I had a small taste of that kind of pain when a disc ruptured in my neck two years ago. The five weeks between the rupture and my surgery were the worst of my life. I lost the use of my left arm (got it back with PT post-op), and despite the muscle relaxants, steroids, nerve pills, and anti-inflammatories, I barely slept. I roamed the house, moving from my bed to the guest bed to the recliner to the couch, trying to get comfy enough for sleep. I'd get maybe an hour at a time before waking up, crying, and moving to a new spot. You are amazing and so strong to have made the choice to live your life and do what you love and not give in to the pain.

[mandy]

I have never experienced chronic pain, and pray I never do. I experienced my level 10 when I gave birth to my first baby and my epidural didn't take. I was not mentally prepared to deal with that kind of pain. And it only lasted, um, 4 minutes or so. I can't imagine living with dibilatating pain that I'm sure is way worse than delivery pain. And to have it all day, every day?! I wish there was something someone could do to make it better. I know Dr. Painless tries his best, but coming from someone who doesn't fully understand, it seems like there has got to be something out there that could give you relief. Something....anything!

I also hope that you don't take offense to me comparing child birth to your pain. I know that they're not the same, but that is the only intense pain I have experienced and so therefore I refer to my own personal pain in order to try and even grasp what you are going through.

I think you're amazing and I find you to be very inspiring. Continuing to live life and enjoy your hobbies when you feel the way you do is nothing short of phenomenal.

As a side note, I was reading through the comments and as I read one, I thought to myself, that sounds like something Sandi would say. Sure enough, I look down and there was her name. It is crazy that I have never met either one of you, but I feel like I know you both. Maybe one day!

[Anne Gibert]

I am glad you posted this. I read it trying to compare pain that I have had in the past with what you describe. The closest I can come is the migraines I used to have (haven't had one for about 7 years, thank goodness). I knew, even when they were at their worst that they would stop at some point. I remember thinking, if I had to have this pain for the rest of my life I would just as soon check out now.

You are very brave to carry on with your life as cheerfully as you do. You take wonderful photos, you notice even the small details of your world, you are funny and you write all sorts of entertaining and sensible posts. And some that stir people up. Despite your ordeal with pain, you still are able to enjoy living. You are a true hero!

Weird twisted people write nasty anonymous emails. I feel kind of sorry for them.

[Kate D.]

I have very littel to reference the amount of pain you live with daily. I thought 2 days of bad back pain was going to end me. If I had to live with it daily I might just curl up and want to die. I know my father in law has back pain, with multiple surgeries and has the range of medicine for whatever level of pain he is at. He rarely complains and continues to be active and does a lot with my daughter. I worry that he will over due it but I think he is tryng to enjoy his grandchild and ignoring the pain as much as he can.

[Linda]

Suzanne, I know that pain is very draining and that when i am in pain (and I am sure it is never near the pain you feel) It makes me irritble, tired, distracted and unable to concentrate. I just want to say that you are so admirable for being able to live a life of such verve and flair in the midst of such an obstacle. I know that sometimes when I feel sorry for myself or feel like I "can't" do something, you give me inspiration. I am sure you inspire many others too. Anyone who is assinine enough to troll you in any way is too much of a loser to even give the time of day. You have the power girly - don't ever rent that space in your head to the trolls of this world. You rock. (((hugs)))))

[Kelly]

People can be such assholes, intentionally or not.
Glad you'r flare up is improving. Glad dr. painless has gotten you down from 9/10 to a 6ish more often. You inspire me every day.

[Overflowing Brain (Katie)]

Yeeeeep.

I live at a 4 most days. When it started it felt more like a 6 or 7, but it's been almost 2 years of constant pain now, so I've accommodated and I label it a 4. Last month I had a 10 day. I honestly wasn't sure if I would live to see the end of it. The 10 days are the longest days. And you tell people that you're having a bad pain day and they think, well, I had a bad headache and I still got out of bed, but it's just not the same. It took me 2 hours to get out of bed that morning to make coffee, which I only did because I knew if I didn't have caffeine, the headache could get worse. Though I wasn't sure exactly how that was even possible. I couldn't sleep it away, pills did nothing. I laid in bed and willed it to go down and 2 days later, it did.

I take suggestions all the time on ways to help myself, but I cannot stand when someone calls me dramatic or questions the authenticity of my pain. I get that they can't understand it, but to assume that because they've never had it that it can't be real? That I just do not get, or tolerate, at all.

[Maura]

I can't quite comprehend what crap people have said to you about this because it's just beyond my understanding how people can criticize someone who's in pain. Whatever happened to "walk a mile in my shoes..." before leaping to be an expert?

My mom lived with chronic pain, though I don't believe it was quite at your level, so I know the daily struggle it is, not just for the person suffering with it, but those who support them and want so desperately to do nothing more than take that pain away.

I admire your strength in both dealing with the pain and writing about it. And anyone who dares to criticize can go take a long walk off a short pier and THEN come back tell you that you're doing it wrong.

(((hugs)))

[Trina]

I also live at the 9-10 level right now, currently waiting for my insurance to approve the stimulator and I agree that people can be totally ignorant to what pain like this can do to a person. I have heard "get over it" or "you are going to be a drug addict if you keep taking those pills, do you really need them?" or "it can't be that bad", and "just relax and loosen up and it wont hurt so much"- like if that worked I would have already done it- duh!!
People just don't think. I have thought maybe everyone should have a day of feeling like I feel so they know how bad it is, but then again I wouldn't wish it on my worst enemy! I enjoy reading your posts and although I know I am not the only one living this way- it makes it more real to read your blog and have someone to see that is muddling their way through like me! Kind of like "If she can do it so can I!"
{{{{{{{HUGS}}}}}}}

[Ginger]

Oh Suzanne... listen, the reason those people are trying to tear you down and lecture you about your pain? Because they are jealous! Yes, jealous!

Why? you ask, would anyone be jealous of someone who is in constant pain 24/7?

It's simple, y'all. Because Suzanne, you look MARVELOUS darling, and your writing ROCKS and those miserable people see your stunning photos and read your incredibly talented blogs. Then they look in the mirror and wonder why they look so haggard, and they have no followers and they have ZERO talent - when they have just gotten a good night's sleep and aren't in any pain!

See? They compare themselves to you, and they wonder what-the-hell is wrong with them! Just keep on being incredible and I promise you won't lose any readers that matter! Like everyone else has said - you're such an inspiration to so many of us.

Myself, I think to myself every day: If Suzanne can do what she does in her situation, then Ginger can get up and go to work, after only getting a few hours of sleep, with a sore neck or a throbbing foot! You make me realize how trivial my problems really are. You make me feel like my glass is half full, instead of half empty.

Do you realize how powerful and incredible that is??

Girl, I love th hell outta you, and there is nothing you could do or post that would cause me to EVER stop coming in here to see what you're up to! I can't wait to read Part Two!

[Sandra]

Fuck the Negative Nellies!!!!

I really do hope that someday technology/drugs will be available to manage your pain even better. I can't imagine what it's like to be you, but I've always felt that you're AMAZING! Despite the pain you live with daily you remain active in your children's lives, doing what you love (photography) and are LIVING your life to the fullest despite the daily earth quaking pain. In my opinion you are fully allowed to bitch, complain, scream, freak out, go silent, blog, twitter, or anything else you find helfpul or therapeutic to deal with your current state.

So yeah, FUCK THE NEGATIVE NELLIES!

[Momma Sunshine]

I was in a car accident 15 years ago, and have struggled with pain since then, though NOTHING near what you describe. And still, even with my level 3 or 4 pain (daily), I am exhausted most of the time. I can't even imagine what you must be going through. And neither can anyone else, for that matter. No one should ever even try.

You are a brave woman for putting your experience out there for other people to share. Keep doing that. There will be negative people around no matter what you write. At least you are brave enough to write the truth, and stand behind your words. Kudos.

[Karen in East Texas]

Amen Sista, you tell'em! People are so cruel and thoughtless sometimes. Try not to let them get to you.

I understand what you mean about most people, including family, not understanding what it's like to live in constant pain. I to live in constant pain and with chronic exhaustion and I hate it. Life goes on though and I try my best to enjoy each and every day.

I'm glad your flare is easing up. Prayers coming your way.

[Erica]

I'm an emotional and physical pain sissy. I tend to avoid anything that might cause pain. My natural instinct when I do experience any kind of pain is to lie as still as possible. Reading your blog I can see that you don't just cope with your life, you take and give great joy. Sometimes there's a risk but you're strong enough to handle it. It's inspirational and I try to remember your attitude whenever I'm facing anything difficult. I'm not always successful, but I thought you should know that you are even an inspiration to people who don't experience chronic pain.

That said, diagnosing people on the internet when you have absolutely no access to their medical records is kind of fun. Most people do it. Not anonymously though. That's cowardly.

Keep doing what you do Twentyfour!

[Leann]

Thank you for sharing with us. My son has a chronic disease and it is so hard to watch my baby in pain. I dont want to sound like I am "pitying" you but I am so sorry for your pain. I pray you will improve.

[Be]

Excuse my directness here. FUCK TROLLS!

[linda]

Ginger's comment rocks!!!!

[Danielle Liss]

I have fibro and an array of other delightful gifts. It is amazing how many health experts there are. I wish people would, you know, shut up, because I know my body and I know how to take care of me. I am also not making shit up. I worked for a man who didn't believe a word I said. It was not a pleasant time.

I hope you feel better and get back to those level six days. And, yeah, I know what it is like to look forward to those. It's sad when that is our normal.

[Heather]

All I can say is I've had chronic pain for a long time now, and if someone talks smack, I smile and I tell them I hope for their sake, they never know my pain, but that I'm not a bigger person than they are, and if I had a way to transfer it to them, I sure as I stand here breathing I would. I think people who are like that have their own issues that they don't want to deal with. And I'm sending my good vibes your way!

[Deidre]

Oh 24, I am so sorry that people still use the internet to anonymous give unwanted advice and criticism to those who don't even want it!

Feel better and write it out girl.

[linda]

I don't understand people who are just rude, mean and thoughtless. Mom used to tell us "If you don't have anything nice to say, don't say anything at all!" I have never experienced the kind of pain you live with, I can't even imagine it.

[dona]

You can't explain chronic pain. Unless you live it and experience it, you can't imagine it. Some people function quite well at a pain level of 5-6, other people? not so much. Everyone's tolerance for pain is different.

[Rachael]

What a great comment from Ginger! Ginger Rocks! :D

[Kristen]

It makes me so sad to think that you are in so much pain every.single.day. You are an a amazing woman, and the fact that you live your life the way you do shows incredible strength and perseverance.