Darkest Days 1

I’ve been in terrible pain for a few weeks now, in addition to all my usual pain.  I have a peripheral stimulator in my abdomen that usually controls nerve pain caused by a complication from a surgery to fix an inguinal hernia.  The stimulator was implanted in 2008 and I believe that it is now dying.  It has a safety kill switch at nine years, but my doctors tell me that they usually only last about five years.  It has been six years.  The pain is terrible it feels like needles and fire in my crotch and down my inner thigh.  It’s a very awkward place to have pain and even harder to get an ice pack to, which is my greatest defense against pain.  When my pain gets this bad my mood and mind deteriorate with it.  My mind is constantly dragged back to the most painful time in my life.  I believe we all suffer tragedies in our lives, it is how we respond to them that define us.  I’ve certainly made my fair share of mistakes, but I wouldn’t take them  back because they were some of the most profound lessons of my life.

So gather around the campfire and let me tell you my tale of woe and, more importantly, what I learned (in blue).

campfi

My pain had started in 2007 (I was 28) and I struggled terribly with a complete change in everything in my life.  By 2008 I spent my time trying to convince those I loved that death would be a blessing to me.  The pain was so bad and I had been offered no options, no possibilities that it would ever get better.  I didn’t just give up, I had tried everything from meds to nerve blocks to acupuncture to chiropractic to any number of alternative therapies.  Many agonizing attempts to shut the nerve damage down or even quiet it just a little.  All to no avail.

There are hundreds of treatments out there for chronic pain.  Meds are not your only option; in fact, I believe they are the worst one as they help the pain tear apart your mind.  Don’t be afraid to try different things.  Many won’t work for you and it can be frustrating and add to your hopelessness, but eventually something will.  Hold on and keep trying.  I know it’s hard; I hate it too, but ask for help from you doctors and your loved ones.  They are the ones that will get you through this.

It's worth a try, right?

It’s worth a try, right?

By that time I had one surgery to repair the hernia and one to remove the mesh.  During the second surgery the inguinal nerve was cut because it was wrapped around the mesh.  Finally my THIRD pain specialist offered me the stimulator.  Remember that doctors are not gods.  They don’t know everything going on in the medical world and some, in all reality, really don’t care about their patients.  If you find yourself in this position find a different doctor, every  insurance will cover another opinion.  Even though my insurance didn’t cover the implant, I was fortunate enough to have parents that felt my life was well worth the very high cost of this off label surgery.  We aren’t rich by any stretch of the imagination so this was a big deal.

Regardless of what some may think, doctors are not gods. They can believe it, but don't you dare.

Regardless of what some may think, doctors are not gods. They can believe it, but don’t you dare.

To get the surgery you first have the wires implanted as a trial to see if it helps.  It did.  So we went ahead with the actual implant, which required I be awake during surgery to make sure the wires were placed where they worked.  The surgery took four hours, I was tied down to a table, I could feel blood running down my side, I could feel them yanking and tugging on my body, I listened to them talk, and they had trouble with me because I got so cold I was shaking violently.  It’s hard to perform surgery on a shaking subject.  I survived it and the very painful recovery including being violently ill on a brand new abdominal incision.  Eventually I did find some relief and tried to crawl my way back to the living world.

This is the implant on the outside of my body with the wired in.  At least I didn't lose my sense of humor.

This is the implant on the outside of my body with the wired in. At least I didn’t lose my sense of humor.

If you have any surgeries keep in mind these are chronic pain on steroids to your mind and heart.  The surgery itself is a trauma and during recovery you are going to suffer even greater pain.  I had my tonsils out when I was 26.  It was a miserable surgery, terribly painful recovery.  During the recovery I thought I was losing my mind, my life, which I loved started looking and feeling miserable.  It was because I was miserable.  Fortunately I had a Mom who understood this and instructed me not to make any decisions until I felt better.  Don’t make any decisions right after surgery, ever!  Wait a while and make sure you still feel that way when the pain eases up.

For those that have never experienced it, chronic pain tears apart your heart and mind as much as it does your body.  It’s harder to think, it’s harder to deal with any problems, and it causes severe depression.  It is a major cause of suicide and I was already at that stage.  I survived that long because some of my loved ones refused to let go.  I know it was because they loved me, but I resented it.  They didn’t understand what they were asking of me and I felt like they didn’t care how much I was suffering.  Our life experiences had so significantly diverged that we no longer understood each other.  Which, of course, caused problems.

As I was finally finding a little footing the wires in my abdomen began to migrate.  So much so that you could see them sticking out of my body behind a small layer of skin.  I had another surgery to pull them back and lock them down so they wouldn’t break through.  It lasted a couple of months.  Then we had to do it again, much more severely.  Again both recoveries were awful and I fell deeper and deeper into despair.  I spent much of my time hoping and praying for death.  Anything, any way, just make it end.

Please just make it STOP.

Please just make it STOP.

Facebook wasn’t popular at the time, so on a site called Lifejournal I posted this:

Trouble is a part of life, and if you don’t share it, you don’t give the person who loves you a chance to love you enough.

–Dinah Shore–

“For starters when I say highly filtered, I mean it.  This is my business and I’m filling in the people on this list in out of respect.  The truth is you need to know where my head is right now as it will affect you too.  I’m trying to learn from my mistakes here and while in Aus I kept everything to myself and found myself in a hole that took too long to climb.  I’m no longer under the delusion that my problems only affect me.

Where I am sitting now is in a place where my life is the moments in between painful procedures and narcotic doses.  In other words, my life, right now, is really no life at all.  The last three weeks have been excruciating.  I have had three episodes of horrific pain in which I sweat and shake and focus all of my energy on not screaming my head off.  I find myself hoping I will pass out from the pain.  None of these have occurred conveniently at home.  I had one in a car full of friends, one at work, and one in a movie theater.  I have a very high pain tolerance and it is one of my worst fears to be paralyzed with pain with an audience, no matter who they are.  As a result I’m beginning to fear putting myself in situations where I have any sort of audience.  I realize that if this continues I could become agoraphobic and that’s something that is very hard to undo.  I am pulling away and I see it.

My work is suffering, I have made mistakes because I am forgetful and disorganized.  My manager is highly unamused with me.  Even after I pulled everything together, it is now falling apart again as I can’t make it through a work day without some amount of narcotics.  I feel stupid and incapable, even though I know its due to the drugs.  I fear losing my job and that is a big issue.  My stress is through the roof.

I am at the end of my rope, to my limits, and beyond what I believe I can handle.

Emotionally I am a wreck.  I am severely depressed, my sleeping and eating habits are erratic at best.  I am fighting the sensation of hopelessness and total lack of control over my own damn life.  I have been stripped of my independence.  I can’t even drive distances as depending on my pain level and my narcotic doses I am legally under the influence and if something were to happen…I would be at fault.  Not to mention I might hurt myself or someone else.  I haven’t been able to wear normal or fitting clothes in almost a year as the pressure causes the pain to increase.  I am incapable of simple tasks, memory, and basic thinking.  My ego, is needless to say, suffering a steady stream of blows.  I had a brilliant shining moment of normality with friends at dinner one night, where I laughed, and played cards, had a glass of wine, and felt for a brief moment that life as I knew it still existed.  Unfortunately the next day my pain level was through the rough…probably the laughter.  It’s hard not to feel like having fun has a cost for me.  I feel myself falling and I know that I am in need of help.  I have found a counselor that specializes in chronic pain and am now just trying to find time for an appointment in between my Dr. appointments.  Apparently patients suffering from chronic pain have a high suicide rate.  I am not shocked.  One of the first specialist I talked to actually suggested a highly intensive program that combined all levels of treatment in one place.

I have shared all of this with you not because I think you can fix it, because you can’t.  Nor am I looking for attention or concern.  I hate it when people worry about me, so please, try to keep it to a minimum.  You care, you are concerned, we can leave it at that.  I am telling you because you are part of my life and you deserve to know why I am acting and reacting the way I am.  Also to see that I am trying my best to meet it all head on and keep myself treading water.  I am doing my best with a shitty situation and if I start to lose, I may not be able to communicate it well.  You are being warned accordingly.  This is where I am, this is my situation, and this is you being a part of my life and heart and knowing and understanding the details of my current struggle.  I love you all, and I’m doing my best.”

Danger! Danger! Beware of what is to come.

Danger! Danger! Beware of what is to come.

This was a HUGE warning sign and I don’t think my loved ones realized the seriousness of the situation.  Nor did they know that I was understating my situation.  I’m not one for drama, I don’t crave attention, this was an honest warning that I was falling apart and I didn’t know what to do or how to cope.  If you ever see or hear anything like this from a loved one, even something much less blunt, know that the situation is probably worse than the person in chronic pain is stating.  I would open a very gentle conversation with them right away.  Don’t say “if you need anything let me know” because we don’t know what we need.  Sit down and discuss concrete ways you can help, even in small ways like vacuuming, doing the dishes, or bringing over a meal.  These seem like little things, but to someone struggling with their health they are huge and overwhelming.  Even if there isn’t much you can physically do at least you have made your love and support clear and that could make all the difference. 

A very big and very unfortunate side effect of chronic illness is that we often feel that our friends, our family, and even our doctors don’t believe us, think we are exaggerating, think it is in our heads, or believe it is somehow our own fault.  Why do we feel this way?  Because we hear it in so many ways from so many people.  Most people in our lives have directly or indirectly suggested that if we just “got more exercise,” “took this pill,” “tried this veggie,” “ignored the pain,”  “got over it,” “tried harder,” basically acted or reacted any millions of different ways our situation would magically resolve.   Words like this feel like attacks on how we are handling a difficult situation.  Unfortunately, they are more likely misguided attempts to help.  Society doesn’t know how to deal with chronic illness.  It is hard to watch a healthy active individual stripped of everything.  It makes them question the fragility of their own lives.  No one enjoys being reminded of their own mortality.   Unfortunately, this means instead of understanding and support, those suffering chronic illness and pain sometimes encounter hostility and mistrust.

Something I found out the hard way…(next post).

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About leitis23

I'm an adventure, living life to the fullest, and doing stupid things enthusiast, whose life took a serious left turn into chronic invisible illness. My saga of adventures in the world and in medicine never fail to keep life interesting.
This entry was posted in anxiety, caring, chronic fatigue syndrome, Chronic Illness, Chronic Pain, compassion, conditions and diseases, coping, depression, fibromyalgia, health, invisible illness, pain management, understanding and tagged , , , , . Bookmark the permalink.

14 Responses to Darkest Days 1

  1. Cynthia oeser says:

    I am fortunate to have access to your blog. It doesn’t seem right to use the word “enjoy”, but I do enjoy reading your posts. Even this new one, which really touched me because your level of suffering came through so clearly. I know you don’t want sympathy or concern, so I will just say thank you. Your sharing is so greatly appreciated by this person who also has chronic pain, unending pain. I am so sorry that it happened to you so young. And by way of a medical accident.

    • leitis23 says:

      Thanks for reading. I’m glad that you are, well, finding them useful. Even enjoying them would be ok. I do hope that others who are suffering find they are not alone and find ways to communicate with those around them. This new one is a three parter,..so stay tuned. The next two will be up shortly. Thanks again for reading and commenting. I really do appreciate it.

      • Cynthia oeser says:

        Hi K….so glad to hear that your device may need replacement and will be hopefully replaced. Some light in your dark tunnel. Your writing is SOO valuable to me. And yes….I think you are doing a great service. It’s so good for all of us painees to know we are not alone, just as you said. AND, you write so well! Really appreciate you…..sending love and healing energy….Cindy

  2. Maureen Roberts says:

    Spot on a always…. looking forward to the next two parts.

    • leitis23 says:

      Thanks, Maureen. I’m always glad to know you are reading. 🙂 This series was a really hard one to write. As you can tell it’s pretty personal and it pretty much was the most painful experience of my life. Which is saying something, all things considered!

  3. tracy nagy says:

    Thank you so much for sharing such an intimate and painful story with us. I, too am struggling with “living” my life with chronic pain and all of his friends. It is so important that you have shared your story, your pain and fears, your life with others because there are so many people suffering in the shadows alone. I believe that chronic illnesses and pain isolate us from everything and this sharing is a great forum. For years i hid my symptoms the best i could and now 16 years later i no longer have the strength to do so. My family is supportive but so much falls on my shoulders. None of us wants anyone else to suffer as we do but at the same time it is comforting knowing that a person like you is out there, knowing and understanding. Again, thank you for being so brave and honest in sharing your life with all of us. God bless and i do look forward to reading more from you. Tracy

    • leitis23 says:

      Thank you for reading and all of the compliments. Your whole comment pretty much sums up exactly why I write. I also spent a lot of years believing I was alone in how I felt, but the truth is that I’m not and if I get that message to one person then it is all worth it. Someone made that difference for me, so I always hope to pay it forward. Thanks for reading and feel free to share.

  4. Awesome post. So true on so many levels. I have had severe pelvic neuropathic pain since 2002. I have been in the dark places you discuss. I still struggle daily not to live in that cave.

    I think perhaps the most difficult thing of all in dealing with severe chronic pain is the recurring thought that I may be put in a position where I will decide to end my own life. I know how horribly this can affect loved ones–I’ve seen it destroy the father of my best friend in high school who killed himself. But at the point at which I cannot even function and am essentially bedridden, and I am going to die anyway… Ugh. What a friggin’ burden to bear. Going out slow so as to not traumatize loved ones? Or going out quick and leaving a mess? Horrible choice. So I know exactly where you’re coming from when you talk about praying for death.

    Thank you for your post. I truly hope you find some level of pain relief soon. I know what a difference it can make, even in small amounts.

    • leitis23 says:

      Wow, someone else with the pelvic neuropathic pain. Is that not the worst possible location to have chronic pain? I’m not saying it’s the most painful, because I obviously don’t know that, but it is the most awkward. When you tell someone you are in pain their first question is “where?” and then there is that awkward moment when you try to explain in the least graphic detail possible that it’s basically your crotch and all the adjoining sensitive bits. Then comes the awkward silence. I don’t blame them. What kind of comment can you make to that? Eeesh. Anyhow, yes, the question of being a burden or a wound. I’ve experienced both sudden death and terminal and fatal illness and on a selfish level, when it comes down to that I going out quickly. On a not so selfish level I feel the answer is the same. The pain and suffering that goes on before someone dies of illness leaves it’s own wounds and those are the freshest memories you leave your loved ones. Not of you smiling and laughing but of your pain and misery. They may regret the loss of time with you, but it is my belief that there is no point at which we are ready to say goodbye to our loved ones. And again, the lost time is not quality time, it’s actually misery. I know many believe otherwise and that is fine, but for a crappy decision these are my thoughts. Having thought about it quite a lot, unfortunately. You?

      I saw my doctor and they do think the device is having problems and they are talking about replacing it. So this isn’t permanent, and I know that. I just have to hold on and in the mean time, hopefully my writing will do some good.

      All the best.
      K

      • I’m so glad that you may get your stim working right again. Hang tough until then. Hope is life.

        Pelvic pain is horrible. Whatever gender you are (I’m male), it strikes at the core of your being. The root chakra is the survival center, and it is right there at the perineum. No wonder we are so staggered by this.

        Mine is rectal and sacral. I have pudendal neuropathy and I can’t sit without severe pain, not for more than a few minutes. So I am either standing or lying down. It’s such an isolating condition. I can’t drive much, go out to eat, go to a movie, go on a date, you name it, in our culture sitting is a total given. When I tell people I can’t sit they cock their head and say, “What?” And you are so right–this isn’t something you can talk about easily. I usually just say I have a bad back, since the sacrum is part of the back.

        Re death… I am strong believer in the right to die. Not just for the so called terminally ill patients, but for those suffering beyond what they can continue to bear. Unfortunately, western society doesn’t hold this view yet. I don’t know about other cultures, but here in the USA death is the elephant in the room. We spend so much of life in denial of it until it slaps us in the face, then after the funeral we try to go back to forgetting about it.

        When I read people saying Robin Williams was selfish, I wanted to say F#&* YOU! YOU HAVE UTTERLY NO CLUE about what the man was carrying and had obviously been carrying his whole life. He bore it with grace for years and years and then he couldn’t any more. It was his choice, as painful as it was for all the rest of us.

        I believe that if euthanasia–regulated heavily, of course–was an option, you would see less suicide. When people know that they have options, there is less hopelessness.

        Thank you for your writing. It has resonated with me ever since I came across your blog.

        BTW, I spoke above of the Elephant. Check out this song by Jason Isbell. He’s referring to cancer but IMO it hits home for chronic illness and death–things that people don’t want to talk about. https://www.youtube.com/watch?v=ClugMhMbrRg

      • leitis23 says:

        I always wondered how this sort of pain would affect a male. I always thought it would be even more painful because your important anatomy is on the outside making you less protected. I’m really sorry to hear about your situation. I agree that it is terribly isolating. Mine is the inguinal nerve which goes up over the hip bone and into the crotch. So mine is the front rather than the back. At least the nerve pain is. I have a deteriorating back as well with all the usual complications including a disc pushing on the S1 nerve that goes down the back of the legs. Between the two, like you, I can’t sit long. I live on ice packs and right now I’m rotating them between my back and between my legs. Still I spend the majority of my time laying down. Everyone thinks that going out to dinner or seeing a movie is an easy activity for someone with poor health when in reality it is actually really hard. At least for some of us. I spend my time laying on my couch with ice packs and netflix and books. So I’m right there with you.

        As far as death goes. I have to say it is really rare that I run into someone that shares my views on it. I also found many of the reactions to Robin Williams frustrating and wanted to scream many times that since they were not him, did not live in his head, they had no clue what he was suffering. Frankly I’m impressed he lived this long and while he was here brought others so much joy. He is someone to be admired not admonished. I am curious, did you have these beliefs before you got sick or did you come by them after you understood real suffering personally. I’ve always felt this way, but suffering myself has really firmed up that belief. Most people in my life disagree with me. I think that part of that is a lack of understanding of what it is to truly suffer. Another part is a lack of compassion and empathy. And another is selfishness. I know that sounds harsh to those that don’t believe this way, and I know some of it is religious and those beliefs I’ll leave alone. Still I have seen people die of ALS and Alzheimer. ALS is terrible, their body quickly disintegrates, but the mind is totally in tact. They know exactly what is going on as they can’t speak, can’t move, are stuck in diapers, and are waiting to die. Yet their loved ones want them to live. I understand not wanting to say goodbye to someone you love, but I don’t understand loving someone and wanting them to suffer so you have more time. I think love is selfless and you want the one you love to be happy whether that includes you or makes you happy doesn’t matter. In this belief, I find that I am often alone. In Oregon they do have regulated euthanasia, but it is only for those who are terminally ill. Like you, I think it should be open to anyone suffering. I would much rather have a wake while I’m still alive, one last party with all my friends and then go peacefully and painlessly surrounded by loved ones rather than be forced into a corner and have to take my life in a way that may be painful, may fail, and will leave my loved ones with more questions and loss. It doesn’t make sense to me.

        As for how our society deals with death. IT DRIVES ME FREAKING NUTS! You are exactly right! We pretend it doesn’t exist until it happens, have our little funeral, and then work real hard to “get over it.” Even when I have lost someone close I have had people close to me tell me that I need to get over it and move on. With in weeks of the death! WTF? What happened to grieving? Why doesn’t our society have any means of really facing death or maybe, and here is a thought, celebrating it. I love the concept of dia de los muertos. Spend a day with your lost loved ones. Have a meal, have a party, have a conversation, celebrate them. Why is this scary to Americans? I figured out a long time ago that I had to find my own ways to deal with and celebrate those I’ve lost and do it alone (how sad is that?) because death is not a topic anyone else wants even think about. Our society has many failings, but I believe this is one of our greatest.

        I know this is an odd question, but where are you located? I’m curious as you have pretty umm, liberal (to use a loaded term in the vaguest of ways) views. My guess is you are on one of the coasts, but I’m happy to be wrong. If you are interested in continuing the conversation off a public forum shoot me an email leitis23@gmail.com.

  5. Pingback: Darkest Days 2 | Then Everything Changed

  6. Pingback: Darkest Days 3 | Then Everything Changed

  7. karen says:

    i have always been told that there is someone out there that is worse off then i am ,,,i havent reached your level of pain ,almost but i went and got help with the pain ,,and so far knock on wood…lololo it is working ,,but i dont know for how long ,i have rsd and r leg nerve damage ,,,,i have had 9 surgeries on my legs ,from since i was 12 ,have you ever heard about ketimine infushions ,,,they work good on me for some pain free days ,just trying to help you get some help with your pain level….i know that nerve pain is the worst pain to feel;i will be praying for you and everyone who has any kind of bad pain ……thank you for making me realize that my pain is not as bad as others ,i do have some pain free time for a few hours a day if i take all my meds ,,i am so lucky they are still working ,,its been a year now that i have had some free pain hours a day ,,,and even a few pain free days a month when i get the ketimine infushion treatment s…….prayers for you and thank you for writing your blog ,,,,,it has made me do a lot of thanking God i have been so lucky so far not to be in your situation ,,,,,,,,hope i can help by telling you about the ketimine infushions ,,,i also use ketimine compound cream ,,,,maybe you can talk to your doctor about theses ,,,,,,sorry so long ,just feel like i wan tto help somebody ,its a good feeling ……………payers for you

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