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).
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.
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.
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.
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.
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.
“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.”
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).