Peanut Butter and Bananas

Some days are harder than others are.

On a day like today when my entire body feels sore from the moment I open my eyes, it’s hard to imagine anything that can help make me feel better. One would think all the pain medications I take might do that; but they only make it possible for me to cope with the always-present pain and the soreness, which is a by-product of any movement or exertion I make with my now atrophied muscles.

Today, however, there was one thing that made me feel wholly better for a short time. I made myself a peanut butter and banana sandwich. My version of a comfort food that I’ve been eating for as long I can remember. If you’ve never tried one, I suggest that you should, at least once in your life. Because, for me, peanut butter and banana sandwiches make everything feel better…

 

 

Spring Cleaning Pain

I’m late posting my entry for last week’s ‘IF Draw A Week‘ challenge that I found on Instagram. It’s not because I didn’t complete it. For whatever reason I had more technology hiccups yesterday, so I diverted my attention to do attempt some Spring Cleaning. I’m cleaning because I feel mentally cluttered as a result of my home becoming cluttered. Actually, it’s been cluttered – and my version of shamefully messy – for a while now because I can’t clean the way I used to and the person I had coming to clean my home for me hasn’t been able to be here for several months. Happily, she found a full-time job that pays enough so she doesn’t have to clean other people’s homes anymore to make ends meet.

Sadly, what that means for me is that I’m sinking under the weight of undone chores. It also means that after making any significant effort, as I did yesterday, I pay for it with added pain. When I finally fell asleep last night – it was actually early this morning – I knew that I’d be in for a painful day, and my body has not disappointed as it continues to narrow the parameters of my life. In this instance, it’s a clean house vs. manageable pain, but the cleaning is not finished yet, so I have to prepare myself for the painful days ahead until it’s all done.

However, if I can’t address the clutter in my home in one go, at least I can briefly put aside the clutter in my mind. The prompt for last week’s ‘IF Draw A Week’ challenge was to “sketch something from real life”, and because it’s not possible to draw pain and I don’t want to depict the growing stack of paper on my dining table, I decided to draw some of my art supplies. The objects I drew are a black binder clip, my trusty Staedtler pencil sharpener, and one of my newly discovered – and quickly becoming favourites – Muji gel pens.

My effort to spring clean my home may not have been successful, but I hope that I successfully captured what these items look like in real life on paper.

 

Creative Pain Distractions

It’s hard being alone with intense pain late at night, as I was last night and the night before. Then again, pain that never stops is hard to cope with at any time of the day. Last night, and other days and nights, when my pain is particularly bad and sleep eludes me, I try to think of things to do – aside from amputating the offending body part(s) – to distract myself. Unfortunately, depending on the pain’s level of intensity, I’m not always successful at turning my thoughts away. However, I do usually end up creating something interesting to look at.

As the pain level rose in my legs and pelvis the night before last, I didn’t have a plan for what I wanted to create. I started to place random dots on a clean page in my sketchbook with a black Sharpie pen. Then I connected the dots together with short straight lines and they became triangles, but the sight of a page full of small triangles didn’t feel satisfying. That led me to connecting the triangles at their various points creating a sort of web, which still felt incomplete. I looked at the page for a short while then started drawing lines within each triangle transforming them into prisms. With each line I added, I saw multi-pointed stars appearing on the page that made me wish for an opportunity to experience weightlessness among them on the off-chance I might not feel any pain without the pull of gravity…

Drawing lines didn’t help make my pain go away on recent nights, but it distracted me from thinking of it for a short time as I imagined creating a new galaxy of endless stars.

 

Opioid Induced Constipation & The Undignified Big Pharma Response

Last Sunday, like millions of other people, I watched Superbowl 50. As usual, there were some great commercials throughout the game. However, I can’t forget one commercial from the 2nd quarter. Not because it was funny and creative like most of them were, but because of the targeted medical condition: opioid induced constipation (OIC). The reason I can’t forget it was how embarrassed I felt as my friend with whom I watched the game laughed at the inappropriate humour the pharmaceutical company used to promote its product. For those of you who don’t suffer from chronic pain or have never had the need to take opioid (narcotic) pain medications for pain relief, I assure you this condition is a real thing. The Australian Pain Society states, One of the most common adverse effects of chronic opioid therapy is constipation. Up to 95% of patients prescribed an opioid report constipation as a side effect, which can occur soon after taking the first dose.”

Opioid induced constipation is also known as opiate bowel dysfunction (OBD); and according to the American College of Gastroenterology “constipation may be debilitating among those who require chronic analgesia [pain relief]. OIC/OBD affected an average of 41% of patients taking an oral opioid for up to 8 weeks.”   The reason for this is that “opioids cause constipation by binding to specific receptors in the gastrointestinal tract and central nervous system, resulting in reduced bowel motility through direct and indirect (anticholinergic) mechanisms.”  In short, the opioid pain medications delay or block messages throughout the body that tell you when you need to empty your bowels.

I understand that a commercial’s purpose is to grab its audience’s attention in a short time. However, the tone of this commercial failed to convey the seriousness of this condition, while using lowbrow humour to flog the product. Practical Pain Management, a publication founded and written by pain experts, notes that although opioids have been in use for centuries; it’s only in recent decades that this kind of medication has received any significant attention and investigation. Sadly, we are only beginning to understand and identify the many side effects of opioids. Constipation, nausea, emesis, pruritus, respiratory depression, and somnolence are well known. However, not so well known are effects on immune function, urinary retention, endocrinopathies, gastroesophageal reflux (GERD), gastroparesis, sleep apnea, cardiovascular system, osteoporosis, emotions, dentition, and renal function.”

This lack of knowledge about opioids begs the question, how many people know that if a patient that has OIC/OBD does not receive the proper medical treatment it “may cause rectal pain and bleeding, abdominal pain and distension, urinary incontinence, faecal impaction, rectal tearing, and, in very severe cases, bowel obstruction and colonic perforation?”  How aware are people that OIC/OBD can reduce a person’s quality of life as much as the chronic pain doctors prescribe the opioid medications to treat? The Australian Pain Society also notes that, Some patients would rather endure chronic pain than suffer from the severe constipation that can arise with long-term opioid therapy. One study found that approximately one-third of patients missed, decreased or stopped using opioids in order to make it easier to have a bowel motion; the majority (86%) of these patients experienced increased pain as a result, which reduced their quality of life. Reducing the opioid dose is not considered useful, as analgesia [pain relief] may be compromised and constipation may not resolve.”

I know that 30 seconds isn’t a long time and not all the points I raise most likely could have been touched on in that amount of time. However, I do know that the pharmaceutical company could have approached this issue in a more dignified way. When the commercial ended – and my friend’s laughter died down –, I did educate him about the seriousness of OIC/OBD, and how I’m affected by this condition because of the large doses of opioid pain medications I have to take to manage my pain. I hope that others who might have been in the same situation during the game were able to have similar conversations. If not, here’s a link to a therapeutic brief from an Australian Pain Society study that gives information about OIC in plain language in a downloadable PDF file: Opioid-induced constipation– a preventable problem

 

Bob Dylan – Dignity

I Won’t Let Pain Stop Me From Comforting A Child

I love my cousin’s children. It was incredible witnessing the birth of her third child a few months ago and having been there makes me feel a strong connection to him. However, her older son – he turned three recently – is working on staking a permanent claim on a corner of my heart. He is one of the sweetest, good-natured children I’ve ever known. He’s affectionate, empathetic, already fiercely protective of those he loves, and hopelessly irresistible. So irresistible, it’s impossible for me to say no to him.

When I spend time with him, my lap becomes his favourite place to sit. He plants himself on my lap for comfort, play, and conversations I sometimes have to pretend to understand – after all, not all three-year-olds have perfect pronunciation. I also become his go-to person when he needs to use the potty. He comes to me, no one else, tells me he has to go, then takes my hand, and leads me to the bathroom. I have to hold him in place so he doesn’t fall into the toilet bowl while he does his business then clean him up, and help him get re-dressed. This may not be my favourite part of spending time with him, but the trust he places in me feels like an enormous privilege.

The only problem with not saying no to him is that it adds to my pain levels. Unfortunately, he weighs more than his newborn brother so having him sit on my lap is one of the best and least enjoyable parts of spending time with him – if that makes any sense. There’s also the issue of how often he needs to use the potty because it means standing and sitting back down for the countless trips with him to the bathroom; or wherever else he feels like leading me: getting snacks from the kitchen or finding his toys. All of this added activity puts a strain on my legs and pelvis; and is most likely the reason I had the intense pain flare I wrote about in my last post after an overnight visit to celebrate his birthday two weeks ago.

Still, no matter how I try to justify it, none of this feels like a good enough reason to deny this little boy the physical closeness that gives him comfort, makes him feel secure, and happy. I also have to admit that even with the added pain; I don’t want to change how I interact with him because I want him to feel loved by me always.

 

Crosby, Stills, Nash & Young – Teach Your Children

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

Never Doubt Your Lived Experiences

Being ill with all these glorious old and all the wonderful new symptoms is teaching me a lot about the people in my life and myself. However, I think the singular most important thing is that I should never allow another person – not even a doctor – to make me doubt my lived experiences. What I’m living through cannot be completely understood by another person, so why should I allow another person to question my experiences. Why should someone else get to tell me how much pain I should be feeling, why I shouldn’t take so much pain or other medications, or believe they have the right to question why my surgery didn’t deliver the results they expected. Why am I allowing their questioning about my health to make me doubt the value of my lived experiences?

I’ve caught myself allowing some of these doubts to creep in before. This morning a close friend reminded me why I shouldn’t allow that to happen. I spoke to him yesterday about the swelling in my legs and feet then sent him a photo so he could see the extent of it. He called me this morning to tell me how shocked he was by the photo. His exact words were, “When someone tells you their feet are swollen you try to imagine it, but when I saw the photo of your feet I gasped.” He was shocked at how “unrecognizable” my feet are. He said he couldn’t imagine how I must feel or what I’m going through while trying to cope with this on top of everything else.

His expression of empathy toward me was the jolt I needed to remind me that I should never doubt myself. Because of doubting myself, I was delaying going to see my family doctor to get my legs and feet checked because I told myself the swelling isn’t a big deal – the swiftness with which my doctor responded to my email yesterday clearly says I’m wrong. I downplayed this symptom because I was allowing the voices from other people telling me I should be better by now to cloud the reality I’m living with. I’m not better yet. My surgery did not eliminate my pain. I’m taking a significant amount of pain medications because they make it possible for my body to move so I can do basic daily tasks. My legs and feet are swollen beyond recognition and the swelling is adding to the difficulty I already have with walking.

What I’m experiencing is real. What I read that is written by others with health issues, general life issues, or just things from their lives they want to share, are real experiences. No one ever has the right to make another person doubt their lived experiences – their reality – and I have to remind myself of this more often.

 

Adele – Chasing Pavements