Content warning: Some mildly graphic descriptions and depictions of pain/violence/blood. I really dislike the "rate your pain on a scale of 1 to 10" question I get every time I encounter a medical professional. I understand the value it adds - the ability to quantify a subjective thing is a powerful tool for tracking improvement and for quickly assessing a feeling that can be difficult to communicate. But it ALWAYS throws me. I remember the first time I had the nerve to ask a medical assistant who told me to "rate my pain" to give me some examples to compare my numbers to. I was having sharp, intense pelvic pain (unidentified at the time, but years later diagnosed as endometriosis - using my current personal pain scale I was probably actually at a 7, and was doing poorly). She gave me a withering stare, as if I was purposely trying to make her day horrible, and said "10 is the most extreme pain you can imagine". This freaked me out! 10 is the WORST pain I can IMAGINE? I have a pretty active imagination, and I've felt some pretty intense pain in my life, so I said, "uh... this is a 3, I guess." Shortly thereafter, when the doctor came into the room, he said he thought I probably just had gas or constipation, and didn't even bother examining me. After all, what sort of hypochondriac comes to the doctor for abdominal pain that's only a 3 on the pain scale??? ...you see how this is not great. Another drawback of the pain scale is that it's not clear if it's a linear or logarithmic or exponential or some other type of curve - is the amount of pain between 1 and 2 different from the amount of pain between 9 and 10? Is a 6 on the pain scale twice as much pain as a 3? I don't know! Also, it's an inherently individualized, subjective measurement, and thus varies dramatically from person-to-person. I'm sure someone without chronic pain would rate their sprained ankle much higher than I do, because for them it's a serious problem, and for me it's a regular Tuesday. And there's no good way to standardize this, especially when the only benchmark given to patients is that "10 is the worst pain you can imagine". Finally, in the pain scale, you don't capture all of the beautiful descriptors of different types of pain that could exist. "It feels like knives covered in sandpaper are filleting my ovaries" turns into a simple 6. "Someone has unscrewed all of my joints, and then screwed them back on incorrectly" is a boring 4. Lying in the fetal position, with tears leaking out of your eyes, while you quietly whisper, "I just don't know how much longer I can bear this" is now a cold, hard 8. There's no art or depth or opportunity for empathy there. So, inspired by Hyperbole and a Half's better pain scale, I have decided to share the pain scale I have come up with for myself below. Bracing Grace's Highly Personalized Better Pain Scale 1 out of 10
2 out of 10
3 out of 10
4 out of 10
5 out of 10
6 out of 10
7 out of 10
8 out of 10
9 out of 10
10 out of 10
There you have it, folks - a better pain scale. I highly encourage you to create your own personal pain scale as well. If you do, please share it with me - I'd love to see some real pain scales that have actual meaning!
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I must be an incredible actress, because people in my life have often described me as energetic and bubbly. The truth is, no matter where I am or what I am doing, I would rather be taking a nap. I need you to understand that I am not exaggerating when I say this. I'm writing this blog post right now, but I am actually kinda pissed about it and would rather be taking a nap. I'm not certain if it is the hypermobile Ehlers-Danlos syndrome (hEDS), the endometriosis, or the Postural Orthostatic Tachycardia Syndrome (POTS) that makes me always so tired. All of them have chronic fatigue as a common symptom. The most likely explanation is that both hEDS and endometriosis cause me a lot of pain, and being in pain makes you tired. Of course, if being in pain makes you tired, going to work when you're in pain makes you exhausted. I mentioned briefly in my last post (My Chronic Illnesses are a Shitty Roommate) that my primary care provider, St. Claudia, thinks I need to stop working full-time due to the increase it causes in my symptoms, levels of exhaustion, and general feelings of misery. I feel very conflicted about this - I enjoy having a job and excelling at it, and I want to be able to contribute to my husband, Tallboy, and I's finances. But the dark truth is that, even though in our capitalist society every laborer is trading hours of their life for a salary, I am trading more than even that. I am trading every scrap of health and vitality that my body has left. In fact, I usually trade even more energy than my body actually has available. And I'm finding that, even as I make a decent wage at my job, I have gotten myself into debt. Now, being in energy debt isn't necessarily new to me - as I said at the top of this post, I've been tired for as long as I can remember. I've always spent more energy than I have, whether on school, at part-time jobs, or with my friends. But before I started working full-time, I was usually only a couple hundred energy-dollars in debt, and could recoup effectively enough during breaks from school or during other lulls. When I entered corporate America full-time, with its current obsession with continuous improvement and doing more with ever-dwindling resources, there stopped being lulls and there stopped being breaks. My paid time off had to be spent visiting relatives and friends Tallboy and I never get to see because they all live so far away, or getting surgery or other medical treatment for my continuously struggling body. Leaving work early to go to doctor's appointments, though never forbidden, caused coworkers to be obviously suspicious and feel slighted, and there was the ever-present expectation that I work extra hours in the evening to make up for time lost at the doctor's office. The weekend was spent trying to get myself ready enough, healthy enough for the next week, which looks like it's going to be a stressful one! Every week was a stressful one. Every week I fell further behind. Every week, I saw my energy debt grow. Every week my body punished me more. Eventually, my body started to give out. I was wracked with pain even more severe than the chronic pain I've had for my entire adult life, and with this pain came chronic fevers. I was having trouble eating because I shook with constant nausea and constant bouts of diarrhea. My dizziness and confusion increased dramatically and it was getting difficult to drive. Everything that happened to me felt like it was happening to someone else, far away. I could hardly stay conscious through an entire workday, and would silently cry in the bathroom stalls from the pain I was in. I forced myself to go on for months like this, convinced that I was just being weak. Coworkers older than me 'confirmed' this and would gently tease me, saying things like, "oh, we should wrap up this meeting, it looks like Grace is tired and wants to go home!" To be fair, they weren't wrong. I was tired, and I did want to go home. So eventually, I went on disability leave. ...and a miracle happened. For several weeks, my horrifying symptoms continued, but then they started to slowly abate. Nowadays, on my eighth week of disability leave, I feel like a real person again (though my symptoms are still much worse than they were a year ago, and I still have many days of unbearable pain and hope for further improvement). Suddenly, for the first time in my entire life that I can recall, I have days where I'm not several hundred or several thousand energy dollars in debt. And on those good days, I feel like I can do ANYTHING. I could write a book! I could compose a symphony! I could build a vending-machine empire! Surely, I can work full-time again! ...but, as I am kindly reminded by my primary care provider (St. Claudia), my therapist (St. Lisa), my husband (Tallboy), and my very patient best friend (Bestfriend), I probably can't. I can't even go to the grocery store without needing a nap afterwards. As Bestfriend put it, I've been in debt my whole life. And now, all of the sudden, I have $10 dollars, and I feel so rich. "What will I do with this money? I know! I'll take a vacation to Hawaii!" ...I cannot afford to go to Hawaii. Maybe I could get a candy bar, or one of those fuzzy pairs of socks.
I'm trying to learn to be generous with myself. So maybe I'll get both. If your body is your home, then I have a really shitty roommate. See, some people work really hard to keep their homes perfect. These people are your typical health nuts. Most people, though, just do a medium-to-minimal amount of work to keep their homes good enough to live in. This is most able-bodied people. Every once in awhile, you might have someone who trashes their home to the point where it gets really damaged, with mold or holes in the wall or something. Making unhealthy choices can definitely lead to that. But I have a shitty roommate, who comes in and fucks up my home for no reason whatsoever. You might be thinking, "oh, but what if I get a cold or something? That messes up my body-home!" And yes, it does, but having a cold is more like a crappy house guest. Your crappy house guest will leave in a week or so. My shitty roommate is here forever. When I was younger, my shitty roommate mostly stayed in its room. Every once in awhile it would come out and throw some trash around, but to be honest, I didn't even think I had a roommate - just a frequent crappy house guest. When I got into my later teen years, my roommate started to get angry that I wouldn't acknowledge it. It would frequently come out to break my stuff and piss on the rug. I would still deny I had a roommate though. I thought that I just lacked self-discipline... after all, I didn't have proof that it wasn't me who pissed on the rug. It was probably my fault somehow that there was piss on my rug. Nobody else I knew had piss on their rugs. I just had to try harder to not get piss on my rugs. Sometime in my early twenties, my shitty roommate decided to leave its room and never return, spending 100% of its time in my room or the shared living spaces. My shitty roommate started to fuck up the place with a real sense of purpose - and every time our home was a mess, it would make my shitty roommate furious, and it would trash the place even more. This lead to a really shitty cycle. Eventually, I started to go to roommate eviction specialists. However, a lot of the roommate eviction specialists had trouble finding my roommate, or thought I had a different type of roommate than I actually had, or thought my roommate was all in my head. When I had to stay home and clean up after my roommate instead of going to parties or to work, people thought I was being lazy or melodramatic. After all, they had never seen my roommate and most people don't have roommates. Why was I making such a big deal about my roommate? Why couldn't I just clean a little more regularly? A lot of people who always kept their houses immaculately clean kept telling me all sorts of different things I should try. Have I cleaned with vinegar instead of harsh chemicals? Have I tried feng shui? Did I know how to do laundry? Nothing ever worked. I felt very alone, with only a shitty roommate that I couldn't prove existed for company. Eventually, I started to find roommate eviction specialists who tried harder to locate my roommate. These roommate eviction specialists do everything they can to help, but can't get rid of my roommate completely. Even though I still have a shitty roommate, at least now I can point to it for people who don't believe me, and I know things that I can do to slow it down when it's trying to ruin our home. Recently, my best roommate eviction specialist told me that I likely can't keep working - that for me to keep my house from falling apart as my shitty roommate tries to destroy it, I'm going to have to work at cleaning it full-time. I'm really upset about this - how could a roommate I didn't even know existed ten years ago keep me from leading the life I want to lead? Did I do something to deserve this shitty roommate? Why did this shitty roommate choose my house to shack up in? I'll probably never have a good answer for those questions. Even if I had the answers, it wouldn't change the fact that this is the only home I have, and so I don't really have a choice about what to do. My mental-health roommate co-habitation specialist has been helping me to understand that I shouldn't keep battling my roommate. I need to get know my roommate and learn to listen to it in order to find any kind of peace. So that's what I'm going to be trying to do. Come with me on this magical fucking journey.
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Grace Daly
I'm young, hot, and have multiple chronic illnesses. Come with me on this magical fucking journey. Archives
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