Sleep: The Unconscious Way to Cope With Pain

Have you ever had such intense pain, physical, or other, that all you could do to cope with it is sleep?

I’ve slept for the better part of the last 2 days. I had to attend a family event on Sunday afternoon. When I say “had to” I don’t mean forced to, I mean I would have felt horrible – worse than the pain I’ve had since – if I hadn’t attended because it was in honour of one of my favourite aunts who does whatever she can for everyone. However, between the drive to the home of my uncle who hosted, moving around to interact with all the family members and family friends; and then the drive home, my body had to go into near shutdown so I could cope with the resulting pain flare up.

By the time I arrived home around 11:00 PM on Sunday night, I knew I was in for a rough few days; not to mention my experience dictates that it takes at the very least two days for me to recover after going out to do anything. Upon arriving at my uncle’s house in the afternoon, my pain level was already climbing; and on the drive home, the soreness in my legs had already become unbearably intense. When my feet touched the ground as I got out of the car, it was definite that I would not escape the punishment for daring to enjoy life just a little bit while celebrating the life of someone I love. After shutting the door to my home behind me, I made a beeline for my bedroom to change into cozy pajamas then I went into the bathroom to perform the nightly rituals of brushing my teeth and putting my hair up so I don’t wake up with an equally painful tangled mess of hair to deal with.

I was in bed by midnight. It took some time to fall asleep because I was so uncomfortable with the pain building throughout my body. I vaguely remember waking a few times during the night, but I know I was too exhausted to awaken fully to take my overnight breakthrough dose of pain medications. I even slept late and missed taking my first large dose of pain medications on time at 6:00 AM. However, being late this one morning didn’t matter much because being asleep kept me unaware of the pain. The rest of Monday was spent in a groggy haze of pain medications and sleep, but I didn’t miss much because it poured rain most of the day and the grey sky outside was not at all appealing.

I woke up around 4:00 PM because my phone rang. It was my therapist calling me. I called him on Saturday shortly after coming out of my panic attack so he was responding to my message. I knew he wasn’t in the office during the weekend, but I felt that I had to talk to him as soon as it was possible to sort through why the panic attack might have happened. As usual, he helped me sort through the still lingering feelings and to realize how everything I’m coping with – including the current pain flare up – and all that I’ve lived through in my life are so deeply connected, it makes a panic attack a reasonable thing for me – or anyone dealing with so much – to experience. He also gave me some practical tips on how to cope if I have another episode: splash my face with cold water, put cold water/a wet cloth on the back of my neck, breathe into a paper bag, lay on the floor so I feel grounded, and connect visually with objects around me so I can know what’s real. I was grateful for that conversation and the clarity it brought.

I stayed awake for a few hours after that conversation. My friend R called for one of our weekly chats. Then I tried to make sense of the horrible news of the day and deciding what my stomach could tolerate so I could make a meal. I failed at both and fell back to sleep on my couch. I managed to wake up a few hours later to take my last large dose of pain medications and I might have stayed awake for about an hour or two. The next thing I became aware of was that for a second morning in a row my body opted to sleep as late as it could handle before waking to take my morning dose of pain and other medications. After doing that, I still had the need for two morning naps.

I also realize, sometimes I have to accept that it’s not always conscious methods that are best for coping with my pain.

 

The Beatles – Golden Slumbers/Carry That Weight/The End

 

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How Do Some People Do It?

It’s been about two weeks since a significant pain flare up locked my body in its grip. I’ve been trying to block out my pain through numbing my mind by mindlessly watching a copious amount of movies (all six of the earlier Star Wars) and entire seasons of TV shows, while keeping my legs elevated as much as humanly possible on my couch; then sleeping when my body allowed. Roughly translated, that means sleeping when the pain exhausts me. I’ve also talked to as few people as possible, on the phone, or in person because it felt like talking required energy I didn’t have and added fuel to my pain. Fortunately, somewhere inside me the same question kept surfacing: How do some people do it?

How do people with unbeatable diagnoses and/or prognoses beat them? Over the years, I’ve seen countless stories about gravely ill people who inexplicably recover from an illness, for which there is no cure; recover from accidents, when the odds were heavily stacked against them; or learn to walk again after breaking their spines. How do they do it? Are there people blessed with superhuman healing? Are they resilient in a way that science is yet unable to explain and capture in a treatment or deliver in a pill? What is it about a person that makes them so tough they can fight through the worst life throws at them?

I want to know. I need to know because I want to be one of these people. I want the strength to heal my pain, even if it initially causes me more pain and because I want to get better like these people worked so hard to do. This illness that still causes my doctors confusion more than two years after it started and four months after major abdominal surgery, well, I want to figure out how to beat it – with or without a positive prognosis. I wish I knew exactly what I’m fighting to better understand the options I can apply and how to find more if the first set don’t work. But I don’t know; yet, I don’t want to limit myself to what my doctors tell me I can or cannot do to heal. I don’t want to limit my life at all.

I don’t know how other people do it, but I want to beat the odds that seem so highly stacked against me, even if it means approaching each day as if it was the biggest battle of my life. I don’t want to spend more two-week spans feeling helpless or that I’m trapped by pain. I’ve lost a lot because of this illness, but I know it’s time to figure out how to regain fully at least one of the things not completely lost: my fighting spirit. I’ve had to fight for everything my entire life, but I lose a little more of that spirit each week I spend lying on my back.

 

Bon Jovi – It’s My Life

Successful Surgery With A Disappointing Recovery

It’s been four weeks since I had surgery. By all accounts, the surgery was a success. It was a success because they didn’t have to remove any of my bowels, especially my rectum. What they did remove was the mysterious growth that measured about 3cm x 3cm and was attached to my rectum but not growing out of it, and still has yet to be properly named. They also removed the organs the mysterious growth damaged, which were both of my fallopian tubes. In addition, there was a large cyst growing quite happily on my right ovary, which the surgeon removed without damaging my ovary. The surgeons sent everything they removed from my pelvis to pathology for testing. Since I haven’t received any calls requesting that I must urgently meet with any of my doctors, I’m assuming either they haven’t found anything too unusual or they still don’t know what the mysterious growth is.

When I’m finally healed from the surgery, I will have a vertical scar starting just below my belly button and extending down my pelvis measuring 10cm; or 3.9 inches for you non-metric converts. I’m grateful it’s that small because it would have been much larger if any of my bowels had to be removed, and I could have had an ileostomy attached to my abdomen. However, in place of those things, I will also have scars on my abdomen from the allergic reaction I had to the white, adhesive surgical bandage they placed over the steri-strips used to hold my incision wound stitches together. The allergic reaction I had caused my skin to develop large blisters around the edges of the bandage. I now have scars that show an outline of where the bandage was. I can only hope the scars will fade in time.

Apart from the allergic reaction to the surgical bandage, the big disappointment is that my pain is not gone. When I say that I’m not referring to the surgical pain, which is almost gone, I’m talking about the pain I’ve been living with for the past two years. The first signs that it was still with me came on the day they removed my epidural. Within a few hours of it being removed the old leg, hip, and back pain came back with a vengeance and my blood pressure jumped above 160. The nurses called the doctors from the Acute Pain Service to get my pain down to a level I could bear. That took a while and the whole time they were working on me all I felt was fear. Fear that what the doctors predicted prior to surgery was coming to fruition: I could have a major pain flare after surgery that could not be controlled and I might never be pain-free.

As I’m writing this my legs, right hip, and right lower back are hurting. I’ve been having this pain to varying degrees since they removed the epidural and patient controlled anesthetic (PCA) pump. To compensate for their removal and my body’s response to the surgical pain or body trauma as some doctors prefer to call it – at least I’m assuming these are the reasons – I am now taking pain medication at a dose that is just over three times higher than what I was taking before surgery. That scares me more than the pain. It scares me that before surgery, I was taking a significant dose of pain medications that didn’t always ease my pain and now this higher dose is barely doing the same.

My pain specialists are holding on to optimism. They believe that time will be my healer. They have me working on tapering the doses of my pain medications to a point where my pain is managed with the lowest doses possible. Until then I will try to live as normally as I can, which now includes accepting help from others without resisting, and monthly appointments to the pain clinic to monitor my progress.

 

OK Go – Here It Goes Again

Returning to Writing

Today is the first day I am writing here since my surgery on August 11, 2015. It’s not the first day because I was incapable before now. It’s the first day because emotionally I feel ready, although I’m not ready to write about the details of what happened to me. However, I will tell you that regardless of how things have turned out – from a surgical perspective – I still feel blessed. From the moment I woke up from the anesthetics, I’ve had so many people caring for and about me (medical staff, friends, and family), and that care continues today and probably will for some time to come.

The reason I’m writing now is that my emotions overcame me during a conversation I was having with my friend M this afternoon when she told me to “let people care for you. It serves them too.” It’s the first time I cried since having surgery – not counting the moments I will tell you about at another time when I was in the recovery room. M’s words opened me up because, I assume, I needed the right stimulant to open me up. M felt that this emotional breakdown might be a combination of all the chemicals, the drugs, and effects from surgery building up in my body. That does make sense, but what makes more sense is that I haven’t had a moment to be alone with myself and feelings about all that has happened since I came out of surgery and her words landed on me in a way that made it impossible to keep the emotions and tears inside me any longer. So, the tears spilled out, my breath became shallow, my throat ached and my shoulders shook as I cried.

I recognize that I am being cared for, but I haven’t been caring for myself. I haven’t been tending to my emotional needs even though I know that I’m the only person who can do that. Things – unnamed feelings, fears, anxiety, hurt – have been building up and I have to start to release them before they bury me.

 

Peter Gabriel – Digging In The Dirt