Tag Archives: pain management
I noticed something was wrong in the earliest hours of the morning, when my husband had disappeared from bed but I did not hear anything going on in the bathroom and could not see him anywhere.
Around 8, he got up to go to the bathroom and I lifted myself out of bed to use it after him. When he emerged, he was very clearly not well and said, in a seriously distressed tone, “I just had the most awful night” and stumbled around me back to bed.
It’s not emotional, he clarified as he curled up awkwardly on his side of the mattress, it’s just physical. He had problems feeling seriously sick to his stomach, which never culminated in anything, just churned on and on without relief, and had serious sharp pains in several places — shoulder, lower back, knees — and a generalized all-over ache that left him feeling miserable, unable to find a single comfortable (nay, just non-miserable) position no matter where he stood, sat or lay.
“This is how I imagine you feel every day,” he moaned, as he tossed his body into a different awkward position in an attempt to find some relief.
He needed the still, quiet, restful sleep so badly, but hurt too much to stay lying in place in bed for more than a few moments, and the pain was too distracting to be able to actually fall asleep — and precisely because of this, he was in no condition to be anywhere else but in bed sleeping. A familiar situation for me.
A few minutes later, already in his thirtieth position attempting to achieve some state of rest in bed, he pushed over to where I sat on my side of the bed and asked, “How do you do this every single day?”
Staring at my nightstand drawer, I smiled a bit and replied, “A lot of medicine. And you to help me.”
Short background: Rush Limbaugh (link goes to Wikipedia article) is a US conservative radio talk show host who has risen to prominence in the US by inciting “controversy” after “controversy” with hateful rhetoric. He also went through an ordeal some time back for addiction to prescription painkillers, an incident that the US left likes to use against him. Recently he was rushed to the hospital again, which has spurred a new round of derision from US liberals.
Rush Limbaugh isn’t exactly a sympathetic character. His politics are vile and he makes a career out of escalating white male resentment into white male supremacy. And that causes real harm to real people who don’t meet the requirements to be part of Limbaugh’s He-Man Woman-Haterz Club.
How did he end up abusing prescription painkillers? I don’t know. Was he taking them for legitimate pain due to injury, surgery or a medical condition, and the usage got out of hand? Was he consciously using it as a recreational drug? I have to say I am still somewhat bitter about people who use the stuff I need to be able to get on with my daily life as a quick and easy “high,” ultimately making it harder to access needed medication. (But that is argument from emotion, mostly; I would posit that the real problem is a medical field and larger culture which does not take seriously the needs and concerns of chronic pain patients and is eager to punish people who step outside accepted boundaries.)
But even if he was just out for a high, I still feel unease when I see people use that angle to criticize him.
Because, here’s the thing… the same narrative that you are using to condemn this despicable figure is the narrative that is used to condemn me.
You are feeding, growing, reinforcing the same narrative that codes me as an abuser, that makes me out to be a good-for-nothing low-life, that makes it difficult for me to access the medication I need to be able to live my normal daily life.
When you laugh, joke, or rant about Limbaugh’s abuse of narcotics, you are lifting a page from the book of people who would call me a malingerer and interpret my behavior (frustration at barriers to access, agitation and self-advocacy to try to gain access) as signs of addiction. People who would, in the same breath, chastise me for “making it harder for the real sufferers.” (See why my bitterness about recreational use isn’t actually serving the right purpose, in the end?)
Maybe you don’t really think this way. But maybe the people laughing at your joke do.
And maybe, you just made them feel a little bit safer in their scaremongering about “addiction” and deliberate attempts to make life harder for us.
Scoffing at Limbaugh’s hypocrisy is one thing — but when your scoffing takes the form of a very common, quite harmful cultural prejudice — even when you don’t mean it to — it has real effects on real people’s lives. Sort of like that casual incitement that we hate Limbaugh for.
I am quite fond of the pharmaceuticals I keep organized in my nightstand drawer. But I have to be careful not to drop them, so that the cats don’t find them and try to eat them.
But now, there’s a pill I can drop on the floor and let my kitty chew on all he wants! And if he tires of that, he can roll the bottle cap around the kitchen floor for awhile.
(A screenshot of the Etsy page for a pill-shaped cat toy. Several pictures are shown of a long-haired ginger tabby cat enjoying the catnip-filled, half-red half-blue felt toy, and the plastic orange pharmacy bottle with a prescription label reading “Catatonica.”)
The item description:
These jumbo pills contain a healthy dose of extra strength cat nip – just what the good doctor ordered.
Each pill measures approximately 3″ long and each vial contains two.
So get to the pharmacy STAT! You’ll want to make sure you have plenty of “mothers little helpers” on hand.
Take one down, bat it around, kitty is sure to have a ball.
POSSIBLE SIDE EFFECTS:
Temporary ants-in-the-pants followed by extreme drowsiness. Increased appetite not uncommon.
Moderatrix Note: “The Labor of…” is a somewhat intermittent series to re-explore things in daily life taken for granted before living with chronic pain and/or disability. This is a space to share experiences.
My relationship with sleep has changed dramatically throughout my life as I have grown and changed. I am told that I was one of those babies that slept so soundly that my mother could vacuum under my crib during nap time and that even a diaper change didn’t phase me. Later as a toddler I would protest nap time only to succumb to two solid hours of heavy, sweaty sleep. My middle childhood years were plagued with chronic bed wetting, which my mother didn’t totally understand at the time (she would make a scene of putting cloth diapers on me in front of the family at eight years old, or showing my wet sheets off to anyone who would see them) until they discovered that I was both a deep sleeper and had a tiny bladder that didn’t keep up with the rest of my body’s accelerated growth. I also had frequent kidney infections which exacerbated the problem. In High School I crawled through with an average of five hours a night between working as many hours as child labor laws permitted on top of track and band practice with AP classes and boyfriend who somehow managed to squeeze in there.
College was my first experience with insomnia. I am pretty sure it was related to my OCD and subsequent depression, but I can’t be sure. I would go for days on very few hours of sleep, and after a couple of weeks I would crash and not be able to stay awake at all. I eventually scheduled all of my classes on Tuesdays and Thursdays so that I could work from sun up to sun down and beyond the other five days while still participating in college marching band (Go EMU!), and still managed to perfect a beer purification system out of my liver. Some how sleep was something I was able to live without for extended periods of time.
Sleeping positions changed as well. I was a stomach sleeper for as long as I could remember until I got pregnant at 21, and even then I only gave that up when it became physically impossible. At that point I begrudgingly gave in to the side sleeping that was all my doctor could rant about. I had to use around five pillows in addition to the ones under my head just to get comfortable on my side.
Sleep was something I took for granted. I loved sleeping. I hated that I having to admit that I needed it.
Now, I dread it.
Sleep has changed again. I have to consider every tiny detail of sleep, from the time and amount to the bedclothes and the temperature.
I have to get just the right amount. I can’t sleep too little or I will have no energy at all the next day and my body will hurt intolerably to make up for the energy I didn’t restore. If I sleep too much I can’t adjust and I will fall asleep if I sit still long enough. I have to try to get to sleep at the same time every night, weekday and weekend. We don’t have the luxury of “school day” or “not school day”. We still have to adhere to relative bed times on non-school days to keep my body on a schedule. Not being tired can not be an excuse, and that melatonin supplement pill becomes a dear friend, something that does not interact with my meds, but helps me fall gently asleep.
The environment has to be just right. Too much noise will distract or frustrate me. If I am awake or anxious it keeps my brain active and stop me from relaxing. If it is too quiet the silence is too loud (plus, I have tinnitus, so the ringing gets a little intense), so we have an iPod with sleep music to play quietly (it has ocean sounds under music!). The Guy is a cuddly sleeper, and he is very conscious of the possibility that he could hurt me while we sleep. He worries that he will also make me too warm, and sometimes I worry that he doesn’t sleep well because of this (although, in truth, the only being on the planet that could sleep easier is a newborn puppy). He will run a fan or the AC if he thinks that he is kicking off too much heat, but as soon as he thinks it is too cold he shuts it off.
The mattress that came with our beautifully furnished ville in Seoul (we could only bring so much weight of our belongings to Korea) was far too hard for me to sleep on and caused me so much pain that I would cry and could never find a comfortable way to lie, so we had to put a memory foam topper for it, which isn’t as good as the memory foam mattress we had to put in long-term storage in California, but it helps immensely. The pillows have to be just right. One isn’t enough for my neck support, but two is too many, so we had to get a special cervical pillow made from foam to support my head and neck just right, otherwise I would wake up with a worse headache than I already have almost daily. Since being pregnant I am unable to sleep any way but on my side, and I have had to learn how to do this without my limbs touching each other, because the weight of them is too much to bear.
The bedclothes have to be right. Soft enough and not heavy, because sometimes the weight on my legs can cause me to cry from the pressure. If they are too thin I get too cold, and extreme temperatures one way or the other exacerbates any existing pain. This goes for all the blankets we use. We also have to make sure that they are tucked in well (this is where my boot camp education pays off!) so that they don’t come undone and wind around my limbs which will also cause me to awaken in agony, but not too tightly so that I can move around freely so my joint don’t stiffen. The tiniest things that would maybe bother someone else, cause them to shift in their sleep, will jolt me wide awake crying out in pain. This ties in with nightclothes, too, because I have to make the same decisions. I can’t have things that bunch up around my legs, but I have to have enough layers to keep me warm, and socks that are thick enough but that don’t have restricting elastic. It’s a razor thin edge.
Any little misstep one way or the other throws a sprocket in the works and that can mean the difference between a tolerable pain/adequate energy day and a miserable one. It can mean the difference between a day where I can accomplish a few tasks and maybe have time for a brief walk or a day with my feet propped up carefully. All of this work has done nothing for my relationship with sleep. I still love actually sleeping, but hate admitting that I need it. Now, however, I hate that I need it so badly, and that my body will take it whether I am willing or not, but that even if I do need it sometimes it will turn upon itself to disrupt what I have worked so carefully to craft. Sleep is no longer indulgent or relaxing or restful. Sleeping has become a laborious effort.
I’m writing this four days before you’ll see it. (I write most of my posts from the past, due to my schedule.) I mention this so people know that I’m not ignoring recent posts, I’m just not seeing them yet.
Disability & Desire: The Dance of the Heart – This is a pointer link. The actual article is PDF.
From the article:
In 1996, at the age of 24, I found myself in hospital, with empty walls and broken dreams colouring my days. My partner at the time, Janine Clayton, and I were caught up in local taxi violence in Cape Town, South Africa, with members of rival taxi organisations firing at each other. The driver of the taxi we were in died, and my spine was severed by a bullet. My body told me long before doctors had the courage to admit it. I was paralysed from the chest down. During those endless afternoons with little else than my mind to entertain me, I contemplated the extent of my loss. Perhaps what struck me deepest at the time was my conviction that I would never be desired or loved again. I felt that my body had become damaged goods, my sexuality erased.
As time went by, I began to dismantle my perceptions by analsying their origins. I recognised that my mental picture of a person with a disability was that of someone in need of care, someone to be pitied, someone who certainly had no real claim to love or any kind of fulfilling life. The basis of my beliefs was largely informed by society’s consensus on people with disabilities … these were people who were mostly invisible, unless as beggars on the street or patients
What matters, then, is what you do with what you call facts, experiences, truths and ideas. It’s how you handle your perspectives on gender, race, ethnicity, class, and disability. It’s the way that you align the facts (or not) with societal preconceptions about those who are somehow “different.”
It doesn’t matter whether or not you, personally, don’t share the stigmatizing impulses that lead to discrimination and hatred; members of your audience most certainly do. As an artist/performer/writer/…, you have a responsibility to treat those facts in such a way that you don’t perpetuate the beliefs that enable harm. You might even take on the responsibility to change the way that people think and act. Or, then again, perhaps not.
We would never expect the average able bodied person to push themselves to the point of pain to participate in a public event. Whether I am watching my son play hockey or considering taking my boys to the Santa Claus parade, I must consider how much pain I am able to live with to participate. Differently abled parents are no different than able bodied parents. We want to be a part of our children’s lives and yet the barriers that exist often make this impossible.
Those that parent with a disability also bear the social stigma of being unfit. Social services has intervened on many occasions because of questions about our ability to parent. Disablism in this case is supported by concern for the children. It never occurs to many, that if the world were more accessible, that there would be no reason for concern. The fault is not with the body in question but with the makeup of the world.
Friday morning the group I was with wound up discussing a scenario of tension between the demands of being healthy and the desire to live life. I’d love to have both good health and the ability to pattern my life in the manner I want. I don’t. (And I would argue that none of us really do.) I live in a body that will experience pain if I try to do too much. I consider myself lucky to know about where that line lies. And sometimes I choose to push and bring extra pain meds. And sometimes I choose not to push and to be pain free. There’s no magic formula. I try to balance the life I want against what I expect the physical costs of extreme activity to be.
I’d like to present some links that could be useful further reading on these topics….
The first one is from The Perorations of Lady Bracknell. She addresses some really common misconceptions about the social and medical models. Her article is useful for people new to these ideas, many people not new to them, and especially anyone who has ever believed that the social model means impairments don’t cause problems on their own, or that the medical model is the model that good medical professionals ought to use. The link is Chestnuts Roasting on an Open Fire.
Then there’s some things by a writer named Cal Montgomery. She’s cognitively and physically disabled, but has been pressured by physically disabled people to pass as purely physically disabled (the same thing happens to me sometimes). She frequently criticizes the entire concept of “invisible disability”, saying that it makes it sound like the “invisibility” is happening as a trait of the disabled person rather than a lack of understanding in the particular observer. I see very few other people tackling that idea and I think she’s absolutely correct. She talks about it in a lot of places, but her two best articles on the topic are A Hard Look At Invisible Disability and Tangled in the Invisibility Cloak.
I’ve been challenged enough (told I’m making crap up, basically) when I say that autistic people who can pass for non-autistic are usually visible if you understand what to look for, that at one point I got fed up when writing a post that dealt with that, and wrote up a detailed description of precisely what combinations of things are visible to me that are invisible to people who have no idea what to look for. (I then got criticized for writing a “DIY autie-spotting guide”, but that was absolutely not my intention. I was just trying to be concrete about something to avoid being accused of lying.) For people who have trouble imagining how something could be invisible to them but visible to people who know what to look for, this post I wrote might be useful. (Note that I use a lot of terms in it to refer to other people’s perceptions, that I would never use myself.)
If you have links you think are relevant, don’t hesitate to email me: firstname.lastname@example.org Please note my schedule means I may not see your email for a few days.
I am a pop-culture junkie. If you have been playing along at home long enough this is common knowledge. I have been a big fan of House, M.D. since it’s poorly lit pilot. I am simultaneously appalled and amused by his crass behavior. Even the best feminist in me laughs and fairly inappropriate moments.
I have seen and read plenty of critques concerning Dr. House and his manner. I have chewed out my share of doctors for acting like him as if it makes them seem clever. He is a character that is worth critiquing on many levels and for many reasons from many points of view.
What I haven’t seen is a lot of criticism of the characters assembled around House. From Dr. Wilson, or Dr. Cuddy, or the myriad staff members he has had around him (yes, even Dr. Cameron-Chase) I have watched for nigh on five seasons now as all of the people who claim to care about him have done little more than chastise and concern troll his life. Most notably, his addiction to Vicodin as his chosen method of pain management.
A repeated theme throughout the series has been watching person after person in House’s life try to trick or otherwise convince him that he should quit taking Vicodin and learn how to deal with his pain. They constantly badger him about his addiction, and will go to great lengths to get him to quit taking his pain medication.
Only a person who has never experienced chronic pain would dare criticize a person for their pain management.
Because, like it or not, Dr. Gregory House is managing his pain. Sure, he is an addict. There is little argument there. The character admits it freely. In his own words he says that he takes a lot of pills because he is in a lot of pain. Whatever your feelings on narcotic medication it is a proven method for making intense and chronic pain manageable, and a down side to that is that narcotic drugs can in fact be dependency and/or addiction forming. The presence of an addiction does not take away the fact that the pain beneath it is real. When a doctor and a patient together decide to pursue pain management via narcotics such as Vicodin they will weigh the pros and cons of such treatment. One of the cons that is weighed is the fact that a person can develop an addiction to a drug and a tolerance that will probably mean their intake will increase over time. As with any course of treatment the costs must be weighed with the benefits.
House is able to function as a result of the Vicodin to which he has become addicted. He is able to be independent in moving and living, not housebound (no pun intended) by his pain. He is able to hold down his job and do it with the skill through which he receives his notoriety. His course of pain management gives him a life and independance that many of us living with pain or other disabilities are hoping to achieve. It might not make him a happy ray of sunshine all the time, but neither does living in agonizing pain all of the time.
It is very condescending for a person who is not living in pain to assume that they know better than that person how to manager hir pain. The way that I see House’s collegues and the people who could pass for his friends treat him over his addiction and the way he manages his pain strikes too close to the way I feel most doctors and friends of those of us living in chronic pain will treat us.
Criticize the way he behaves to his subordinates. Criticize the way he treats those closest to him. But if you don’t know what it is like to live with chronic pain, don’t criticize his decisions as to how he manages his pain. If it’s not your body, frankly, it’s not your business.
Originally posted at random babble…
Moderatrix note: This post is the love child of my coming to terms with a need and actual want of pills.
When discussions arise of disability, especially, it seems, of invisible disabilities, someone will almost always jump in and start harping about Big Pharma and how they have certainly invented our illness or disorder just to sell us or get us hooked on some new fancy drug. Or, they will insist that we are just addicts who refuse to find ways to manage our pain.
And for some of us it is a type of shaming that is hard to get out of our heads. For me, personally, I have let not just that, but some people actually convince me that pills were so bad that sometimes I convince myself that I can manage my life without them. It usually takes a significant event (which I will leave out of this little anecdote b/c someone that I know reads this blog thinks these things are his business, but I assure you, they are not) to remind me and make me realize that I not only need them, but that it is in my, and my family’s best interest for me to use them.
I saw a doctor recently who took the time to have a real conversation with me about my health, my Fibro and my care. It was incredible and refreshing. She gently insisted and reminded me that I need to take some medications, and together we decided that, yes, some of them don’t hinder me, but actually give me parts of my life back. That while addiction and dependency are different things, real concerns, and things to consider, they are things that we need to weigh against the benefits of taking medications. She took the time to discuss side effects, interactions, whether I would need to take multi-vitamins, that I would need to watch my calcium intake (to avoid getting stones), and discussed lifestyle changes that I have either already made or would need to make to improve my quality of life, and that of my family’s. This is the kind of thing that needs to happen between pain patients, chronic illness patients, and pretty much any patient who needs to take medications and their doctors.Read more: Where I jump in and defend pills…