Tag Archive | break the silence: talk about chronic illness openly

The Long Term Effects of Chronic Pain

Just another short and sweet, easy to print explanation of what even minor long-term untreated chronic pain can do to a person. A person without any other troubles or illnesses. Most of the issues discussed in this article are less life-ending types of chronic pain, but that just serves to further reinforce the point that any kind of pain if left untreated is unhealthy; it can trigger long-term issues with depression and anxiety, even rewire the brain, and can make it difficult to process even mildly disruptive daily events, such as bad traffic.

That is not nothing.

So many of us are in kinds of pain that are so far beyond this little pamphlet from a pain clinic, but the people around us often are not as aware of the little things that go awry when pain stays for too long and is not recognized and treated. I thought this was kind of a nice review for people who are new to thinking about or dealing with illnesses that involve never-ending agony.

Sorry, ignore me, I’m still not able to get this flare up under control, and it’s starting to scare me when I read about others who had their “Big One” in the onset years of their illness that lasted 6-12 months.

Do. Not. Want.

Even a good day is a fight for every positive thought; every scrap of willpower woven together so tightly just to do normal people tasks, inside my own home. On a good day.

Here’s the article:

The Long-Term Effects of Untreated Chronic Pain

Even minor pain, such as a stubbed toe or a paper cut, is unpleasant but that pain fades relatively quickly. Imagine being in pain that never fades, or that fades only to come back a few hours later. What would that do to a person? This is what people with chronic pain have to deal with every day.

Chronic pain, a diagnosis including arthritis, back pain, and recurring migraines, can have a profound effect on a person’s day to day life when it goes untreated. People dealing with ongoing or long-term pain can become irritable, short-tempered, and impatient, and with good reason. Constant pain raises the focus threshold for basic functioning, which leaves the pained person with a greatly reduced ability to find solutions or workarounds to even relatively mundane problems. Something like a traffic jam, which most people would be mildly annoyed by but ultimately take in stride, could seriously throw off the rhythm of someone who is putting forth so much effort just to get through the day.

After a while, pain wears a person down, draining their energy and sapping their motivation. They sometimes attempt to limit social contact in an effort to reduce stress and to decrease the amount of energy they have to spend reacting to their environment. Eventually, many people with chronic pain develop depression-like symptoms: lack of interpersonal interaction, difficulty concentrating on simple tasks, and the desire to simplify their life as much as possible, which often manifests as seeking isolation and quiet. Sleeping often makes the pain less intrusive, and that combined with the exhaustion that pain induces means that it isn’t uncommon for a person to start sleeping upwards of ten hours a day.

Some recent studies have also shown that chronic pain can actually affect a person’s brain chemistry and even change the wiring of the nervous system. Cells in the spinal cord and brain of a person with chronic pain, especially in the section of the brain that processes emotion, deteriorate more quickly than normal, exacerbating many of the depression-like symptoms. It becomes physically more difficult for people with chronic pain to process multiple things at once and react to ongoing changes in their environment, limiting their ability to focus even more. Sleep also becomes difficult, because the section of the brain that regulates sense-data also regulates the sleep cycle. This regulator becomes smaller from reacting to the pain, making falling asleep more difficult for people with chronic pain.

Untreated pain creates a downward spiral of chronic pain symptoms, so it is always best to treat pain early and avoid chronic pain. This is why multidisciplinary pain clinics should be involved for accurate diagnosis and effective intervention early in the course of a painful illness – as soon as the primary care provider runs out of options that they can do themselves such as physical therapy or medications. However, even if the effects of chronic pain have set in, effective interdisciplinary treatment may significantly reduce the consequences of pain in their lives. There are any number of common treatments, which include exercise, physical therapy, a balanced diet, and prescription pain medication. Ultimately, effective treatment depends on the individual person and the specific source of the pain. One thing is very clear, however: the earlier a person begins effective treatment, the less the pain will affect their day-to-day life.In addition to making some symptoms more profound, the change in brain chemistry can, create new ones, as well. The most pronounced of these are anxiety and depression. After enough recurring pain, the brain rewires itself to anticipate future bouts, which makes patients constantly wary and causes significant anxiety related to pain. Because chronic pain often mimics depression by altering how a person’s brain reacts to discomfort and pain, chronic pain often biologically creates a feeling of hopelessness and makes it more difficult to process future pain in a healthy way. In fact, roughly one third of patients with chronic pain develop depression at some point during their lifetime.

via The Long-Term Effects of Untreated Chronic Pain – Integrative Pain Center of Arizona.

Personally I think that depression statistic should be a lot higher… severe chronic pain almost always manifests some form of depression/anxiety/ptsd, although of course there will always be exceptions.

The number would certainly be higher if stigma against mental illnesses were lessened and people felt free to come to their healthcare practitioners with issues relating to depression without fear of being told to take a pill and get over it, or worse; threat of hospitalization.

Many of us have run the wheel before and we don’t need people mistaking our pain for what it is not, so we keep it mostly inward unless we find someone who really understands the myriad issues surrounding chronic pain, disability, and illness. Bottling it up wouldn’t be such a frequent reaction to stress, depression, and anxiety if we lived with a different cultural attitude toward mental and invisible illnesses.

But that’s for another post.

Wishing everyone a low pain day, with extra energy. ❤

I Wear a Leather Jacket…. And I Love to Bake Bread, Can Jam, and Grow Organic Vegetables

I benefit greatly from living in a city where a girl with a motorcycle jacket and teal hair is approached by old ladies in the pharmacy waiting line so they can tell her how much they like the color. Those frequent encounters reinforce that I’m absolutely not weird compared to my city. I’m also not weird compared to any younger version of myself, each version I can think of readily would shake their head in disbelief that I am looking forward to someday having a child with a guy who *gasp* used to play football in high school and *gasp* still watches said games. She would be utterly disgusted that my favorite things are all so different (so borrrrrring) compared to what used to make the list. I think maybe that younger version of me was just trying too hard to be a stereotype I don’t actually fulfill, if I’m being honest to my own soul. So much has changed in me since I was a teen and I don’t want to be that cardboard cut out of a person, so easy to guess, so easy to figure out. Especially with chronic pain, I cannot afford to have such a flat personality.

So as I started thinking about it today, I went from bothered by my kinda strange hobbies to realizing something. In truth, all the things I worry will make me seem boring and “domesticated” are all the things that set me apart and keep people guessing. Lately I spend more time worrying about what will make me happy than what will make the people around me comfortable, which is a totally new thing for someone who used to be afraid to ask for a glass of water as a house guest. What makes me happy might not be exactly what is expected from my appearance, and I enjoy being a little odd like that, now more than ever.

Fall Pumpkin Harvest 2014

With me, what you see is in no way what you get, but then again, it very rarely is. This is a reminder and a wake up call to myself, that my life is not entirely about my disease. My illnesses are not how I introduce myself. Yes, being sick has caused me to no longer be able to work a steady job or drive unless it’s an emergency, and yes, it inconveniences and pains me every single day, and yes, there is no cure and the pills do not help much. It has made socializing terribly difficult, indeed. But after all of that, I still have to live whenever possible, and even some times when it does not seem possible in the slightest. The things I have managed to do while in pain in order to pursue my inner goddess of domesticity, they are not small things, even to most healthy people. People who know my limitations physically often consider my refusal to give up these last hobbies and passions as crazy. My family and close friends think I am nuts for baking my own bread, or lugging out the massive pressure canner for that bumper crop of tomatoes from my garden. The truth is that while these tasks hurt to accomplish, they also sustain me.

2014-08-11 11.10.39

The most important difference between working a few years ago and my much lesser version of “work” now: I don’t have to (and cannot) do it at a particular time. I don’t have to injure myself at someone else’s request over and over again all day long, I pick and choose what and when I do each thing. To say that my illness dictates my day is somewhat untrue. If it were true I would probably do a lot less than I end up managing some days. It would be easy to sit around all day and feel sorry for myself, and I’m not saying I don’t still do that some days. Sometimes I hurt so badly I would rather cut off several fingers than deal with another hour, and sometimes I cannot envision a life that adds up to anything while I’m burdened by these illnesses. It kills me to feel all my pre-illness plans for the future slipping through my fingers, and to have a lack of ability to contribute from both a financial and a physical standpoint.

Sometimes I feel like a monkey shot into space, left to slowly run out of oxygen, unable to control where I am headed or how long my ship holds up. Not a great feeling… but then I have to remind myself as gently as possible that my brain is a cruel liar in this area. I am not alone in space, spinning out of control, I am right where I need to be, taking it one day at a time. It helps to keep in mind that I am new to this and every single day and challenge I face is a learning opportunity. I don’t have to get it all right the first time, and I won’t. And that’s okay. Feeling hopeless and isolated is part of the process, as much as it hurts.

It was hard from the start for me to understand why I wasn’t supposed to tell people the name of this disease I had worked so hard to figure out, and which had such a profound impact on me in every area of my life. Why should I not be able to talk about my diagnosis? Had I not been diagnosed by a real doctor? I pushed back by declaring openly that I have fibromyalgia and chronic fatigue, to pretty much anyone who would listen to me, even for a little while. Explaining over and over and over again how certain symptoms felt, how I felt in the moment, how I had felt in the past, being as thorough and patient as possible while I was asked the same baffling array of stupid questions. Trying to be as insightful as possible, even though at the time I did not myself understand just how badly these two illnesses were embedded in people’s minds as joke illnesses, lazy housewife syndrome, etc. and how much I was being judged for telling my whole story. I didn’t care that I was oversharing, or bringing people down, or being a negative person, because to me I was just speaking the truth.

At first it was just a handful of symptoms, but then it became so overwhelming that I couldn’t keep track of them all and neither could my healthcare team. For the most part we do not know which symptom is caused by which illness, and which illness brought about the rest, or if they would have all manifested eventually no matter which conditions came first. Not knowing is okay too. Accepting that I may never know is finally a part of my story. It does not feel like giving up anymore. It feels like progress.

Getting to this point has meant a lot of sacrifice, I lot of crying and soul-searching and days of feeling listless, numb, and in serious danger of losing it at any second. I still visit those feelings often, and I know I will throughout my life, but they aren’t the end all be all of who I am. I am a painter, a gardener, an advocate for others, a seed saver, a baker, a friend, a lover, a person completely separate from the pain that I feel all of my waking and many of my sleeping hours. I will continue to have hobbies and passions and love in my life, no matter the effects that my illnesses cast across everything.

Garden Spring 2014

My favorite place to be! Here’s a glimpse of the raised bed garden we installed ourselves over two seasons. This is how it looked in late spring 2014 when we finally put in the last two raised beds, so it’s pretty tame and controlled looking. It’s amazing how much work can get done in just a couple of hours, or how I can lose a whole day wondering around pruning each plant and checking each leaf for signs of disease and malnutrition.

Appearances are so often deceiving, and whether that means that the crusty punk rock kid down the street will offer to help you change your tire in the rain even though he doesn’t own a car, or it means that I “don’t look sick” when I very much am, I think that’s just a part of life. We aren’t the neat little package we present ourselves in, and we never will be. I think we’re much better off avoiding labels anyway. Maybe that’s why I’m not so frustrated by that phrase as I know others with chronic illnesses are. It’s okay that I don’t look sick, because I also don’t look like I like to give frilly presents of jars of homemade blueberry jam and peach butter nestled in tissue paper, . But I am sick, and I do like to shower my friends and neighbors with art, homemade bread, pickles, jam, herbal remedies and laundry detergent, as well as homegrown produce. So obviously looks can’t tell you much!

We never know what we will find just below the surface. Sometimes we just need to look more with our hearts and less with our eyes. Healthy or sick, we are all so much more than our outer shells. I strive to be more than my illness as well.

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