Tag Archives: chronic pain

Learning To Talk About Chronic Pain

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I have started to realized recently that I am really bad at talking about pain. (Even that sentence sucked.) When my family and friends ask how I am, I shrug and say, “fine” or “I’m doing okay”. I don’t talk about how shitty I really feel or how much guilty I have that I didn’t get anything done that day besides my self-cares, changing my underwear and washing my face. (Notice I didn’t mention brushing my teeth or taking a shower. Sometimes those things don’t happen. Logical or not, I feel guilty about that.)

Like today. When my best friend asked how my weekend was, I didn’t tell her that I felt really tired and had the most horrific headache the past two days. Instead, I just said my weekend was “good-ish”. Why did I say that? Why didn’t I tell M. what’s going on with me?

I guess part of me thinks talking about pain and illness is whining. We all know people who bitch and moan about their ailments to get other peoples’ attention and sympathy. I don’t want to be one of “those” people. It’s more than just a fear of being annoying, though.

I’m afraid to tell the truth about living with pain and illness. If I told M. the truth, that the fatigue and headache had taken over my entire weekend, that all I had the energy for was sitting in my recliner and using my iPad to read and such, I would have to say that out loud. I would have to acknowledge that another day out of my life was completely gone…. eaten up by fatigue and pain.

My cousin B. has this fantastic expression, “It is what it is.” The pain and fatigue are what they are. They are such overwhelming forces in my life that I don’t even try to fight them. But I don’t want to admit they are there, eating up precious minutes, hours, days, weeks, months and yes, years of my life that I will never get back.

And that’s as much as I can talk about pain tonight. I don’t want to spend another second thinking about misery. I’m going to go cuddle with my dog and read.

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The Art of Just Being

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So I’ve been feeling a little down lately. My health has been lousy for what feels like forever and I’ve barely written two words in months. I feel like a terrible activist. What have I contributed to the world? I’m not working a “traditional” job (what is that, anyways?) and I’m not writing.

Ugh. Feeling pretty useless.

I think it’s time to remind myself that sometimes just being has to be enough.

It’s a hard lesson I’ve had to learn over and over during these last six years since my spinal cord injury. Sometimes, when you’re sick, in pain and tired, and especially when these gawdawful periods of misery stick around for a while and won’t go away no matter what you do, it’s enough to just…. be.

Just “being” is a learned skill.

When you’re sick and in pain, it means learning to have patience with your body and not get frustrated. It means being grateful for the things your body can do. It means accepting your body’s limitations, trying to understand where the pain/illness/fatigue is located and doing whatever it takes to give your body what it needs (nourishment, rest, exercise, medicine, etc).

There are many days when just being means taking things one minute, then one hour and then one day at a time. Otherwise, the pain/fatigue/sickness would just be too unbearable.

Just being means there will be days, weeks, months, and yes, occasionally, years where the most you can do is lay on the couch and read a book or watch Law & Order reruns.

That’s okay. Sometimes just being is enough. You know why? Because tomorrow is another day.

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Sick and Happy About It! (The Pain Chronicles)

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I’m sick today, like sore-throat-and-coughing sick, and I have to admit, I’m really happy about it. No, I’m not thrilled that my throat is scratchy, I can’t stop coughing and I have no voice. No, those things aren’t any fun at all. I’m not delirious with fever, either. I promise. (I just checked my temp. It’s A-OK.)

Despite being miserable, I’m thrilled that I’m sick with something normal for a change. Usually, when I don’t feel well, it is because of pain and fatigue from my spinal cord injury, hydrocephalus and Dandy-Walker syndrome. My experience and the resulting symptoms are so rare that it feels like no one else will ever understand what I go through on a daily basis.

I had a C4 spinal cord injury and although I have regained most of my mobility, I still have a lot of pain in my neck. It hurts if I sleep funny or sit in an uncomfortable position for long periods of time, such as looking up or to the left or right. My neck hurts after being jostled around like a bobble head during car rides. It helps if I cushion it with a pillow but it doesn’t take the pain away completely.

I get a lot of headaches, which vary from tension headaches to migraines. I can deal with the tension headaches, as long as they don’t last too long and make me think the dull, aching rings of pain aren’t actually ventricles in my brain engorging with cerebral spinal fluid. When the ventricles get bigger, that’s when I have to worry about excess pressure on my brain. I have to wonder if my shunt is working. I have to constantly monitor my “tension” headaches to make sure i am not showing signs of shunt failure, like nausea or vomiting. I am constantly wondering, “Is this ‘just’ a headache or do I need to call a doctor to rule out shunt failure?”

Migraines are their own special kind of Satan’s Playground. The pain settles into my right eye, feeling like I got punched, and radiates down my neck to my right arm and fingers. If the migraine is bad enough, eventually I might even get some numbness in the right hand and fingers. How fun. (It’s not a stroke. I promise.)

My head and neck are my two main sources of pain but I also have to deal with soreness and aching in my shoulders, arms, hands, back, legs and feet at times.

Living like this is so incredibly isolating. Someone my age should not have to deal with all of the physical BS I do. I feel like such a freak. That’s why when I get something “normal” like a sore throat, I’m happy. I feel more like the average Jane who is basically healthy than my regular self. Part of me wants to scrum from the rooftops, “Hey world, I’m still a little bit normal!”

I don’t remember what normal is anymore, though.

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Chronic Pain Is Worse Than Writer’s Block

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I don’t blog or write as much as I’d like to. There are a lot of reasons for this but the biggest one is that i live with chronic pain on a daily basis. Since I was injured in March 2005, I have not had a single day where I have not experienced some kind of pain.

My head and neck are my two main sources of pain but I also have to deal with soreness and aching in my shoulders, arms, hands, back, legs and feet at times.

The long and short of it is that pain makes it really hard to write. I don’t want to write when I’m in pain. There are a lot of days when I simply don’t care about stringing two words together. If I could’ve gotten away without writing today, I would have. My neck hurts like heck and I would love to just rest it on a pillow and read a book. But I know that if I want to be a better writer and activist, I need to write/blog more. So I’m forcing myself to type this. The pain makes it hard to concentrate, though. When I’m writing, I often stop several times to play a quick computer game or check Twitter.

The pain makes me doubt myself. It makes me think I have nothing to write about, nothing to blog about. All I can think to write about is my pain and who really wants to read about me whining about that? Yet chronic pain is a problem for me and so many other women, so it should be talked about, right? I feel torn up and confused inside because I don’t know how to make my personal experience with pain political. If this blog is about disability and feminism, I don’t want to just write about my own personal struggles. However, at the moment, my struggle with pain is very personal. It is disabling. It is what I am thinking about nearly every moment of every day.

Where does that leave this blog? I’m not sure. Rather than not post anything at all, I think I am going to start writing more about how pain and disability have affected me. I have no idea this will shake out but I hope you’ll keep reading.

xoxo,
Danine

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