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People say a lot of things to and about folks with invisible chronic illnesses. I think most of the folks on my flist have heard it all before, aimed at them or people they know and love. Some of it's cruel. Some of it is unthinking. Some of it is well-meant but painful. A lot of these things fall into general categories. Things People Say )
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PTSD doesn't just affect me today. It is likely to cause continuing problems in the future. When people say "just get over it," they don't realize that PTSD causes changes in brain chemistry and even in brain structure. These changes have long-term detrimental effects on health, both mental and physical. You can't "just get over" physical changes in your brain. Here's the article summary:

Stress Disorder Increases Risk
Week of September 14, 2009
A recent study found that older veterans who had post-traumatic stress disorder (PTSD) are more at risk for dementia. More than 10 percent of veterans with PTSD developed new cases of dementia, compared with 6.6 percent of those who didn't have PTSD. The findings of the study are the first to link PTSD with dementia. The results were presented at an Alzheimer's Association meeting in Vienna. Dr. Kristine Yaffe of the University of California-San Francisco, analyzed data on 53,155 veterans diagnosed with PTSD and 127,938 veterans without PTSD, using the Department of Veterans Affairs National Patient Care Database.

Here are some links on the website to news stories related to PTSD.

This said, I do everything I can to keep myself together and healthy. It's an uphill fight every day, but I work on maintaining some kind of positive attitude. I connect with friends regularly and maintain an active social network, which alleviates quite a bit of the usual associated isolation, depression, and feelings of uselessness. By helping others when I can, I am able in some measure to help myself. It's not a cure and it's no guarantee that I won't get worse anyway, but I'm determined and stubborn.
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As I start this post, it's 7:51am and I'm still awake. I woke yesterday morning at 9:30 to a robo-call from the Veterans Administration reminding me about an appointment Wednesday that I already knew about. I almost got back to sleep when I received a brief call from a friend at 10:30 am that I forgot to return later yesterday afternoon. I do mean to return her call; she apologized for waking me. I lay in bed, aching and in and out of awareness until about 1:30 pm, when I got up to start my day.

I went to Seattle to hang out with [ profile] alfrecht and [ profile] sebastian_lvx and to go to the Steamvent for the evening. It was a pleasant day, though I was rather cranky, tired, and in pain. I had fun and enjoyed the company of friends and acquaintances.

Insomnia wreaks utter havoc with anything vaguely resembling circadian rhythms in my life. Lately the pain I've been in has screwed with my sleep patterns enough that I'm not entirely sure if I'll be awake or asleep at any given hour. I do intend to make my shrink appointment tomorrow afternoon, though at this point I'm pretty sure I'll be dead on my feet for it.

The insomnia rolls through my life like irregular waves. Some days I'm in bed for 20 hours or more, unable to move. Sometimes I'm awake for two or even three days with barely an hour or two of semi-consciousness. I get shaky and jittery. I can't focus. The only thing that helps me stay together at all is mindless reading of brain-candy; fanfic or cheap bad fiction that might as well be fanfic. The non-fiction I prefer to read is too steep and convoluted for me when I'm in this condition. About the most I can handle is a little Wodehouse -- humorous fluff with the occasional wry literary allusion.

Insomnia is one of the symptoms of a constellation of my invisible illnesses. Post traumatic stress, depression, anxiety, chronic pain, fibromyalgia -- all of them disturb the sleep cycle. When the sleep cycle is disturbed, the illnesses get worse. It's a big vicious cycle, like running in a hamster wheel. Pain cycles into sleeplessness cycles into depression cycles into nightmares cycles into insomnia cycles into pain... you get the picture.

I have medications to help me sleep. Although they're a fairly low dose, I don't take them very often as they're addictive and controlled substances. I've taken several in the past two weeks because of the massive pain in my upper back lately, and it's been the only way for me to settle enough to get any sleep at all. I don't want to take them but sometimes I really do need to. I'll probably take one when I finish this post, and try to get some sleep during the day today, even though right now I'm as wide awake as most people are at noon on a busy day.

I've tried pretty much everything that people suggest: going to bed at the same time every night, using the bedroom only for sleep, blackout curtains, sleep medications, melatonin, meditation, exercise, warm milk, breathwork, relaxation techniques, autohypnosis. Some of these things work. Sometimes. None of them works regularly. Sometimes the only thing I can do is give in to the insomnia and stay awake until I can't stay on my feet or keep my eyes open any longer. That may take a couple of days. I get dark circles under my eyes. My eyes get red and sore and dry. I get shaky and hurt too much to move. Higher thought processes shut down. Trauma triggers get more sensitive and I get more depressed. All because I can't sleep.

This is what chronic invisible illness looks like.
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One of the hardest things I had to do when I was applying for disability was keeping a pain diary. A pain diary is a daily record of pain levels, pain locations, and how said pain effects your daily life. Said diary is a required part of the process, supposedly so that the system and those within it can help judge how much the pain limits your activities and decide whether a disability rating and subsequent payment should be granted.

Keeping a pain diary forces your focus into your body. It forces you to be thoroughly aware of every ache and twinge. It keeps your awareness in the pain rather than in anything else you are (or wish you were) doing. And that kind of constant awareness can be more crippling than the pain itself.

When you're forced to write these things down, there is no escape from how much you hurt; no escape from the limited range of motion or the catch in your hip or the way your foot turns in just a little more than it should when you stand. You realize you hurt in muscles and joints you didn't remember you have. Being compelled to witness the pain in this intensified manner calls attention to each twitch and tremor. Every tightening of the stomach and chest from anxiety or depression is magnified and multiplied. All the sleepless, insomniac hours are recorded faithfully, along with the nightmares and flashbacks, the muzziness of fibro fog, and those incidents where focus is lost for so long that you realize you've been reading the same sentence in a book for the past half hour.

This summer I attended a mindfulness meditation group at the Veterans Administration. For many of the people in the group, it was impossible to separate the concept of mindfulness from this full and agonizing cataloguing of mental and physical pain demanded by a pain diary. The idea of "acceptance" is interpreted to mean one must somehow learn to "love" the pain and the trauma.

Yet this is not what mindfulness is about. Over the years, I've developed a lot of meditative and magical ways to get around the pain I live with. One of those ways is the heart of mindfulness -- acknowledge it and set it aside, calling my attention back to what I'm doing with the rest of my life. I can't get rid of the pain. In many cases I can't even reduce it much. Anxiety still flares, though I don't use medication for it anymore. Mindfulness is allowing myself to remember that the pain, the anxiety, and the stress are there but that these things are not all that I am in this moment. I let myself say "yes, I'm in pain; now remember the road, the shopping, the laundry, petting the dog." Mindfulness lets me take a deep breath, acknowledge what's happening, and continue on with my life.

It is mindfulness that gets me through the days when I can barely move and getting out of bed to walk the dog is a challenge. I can accept that it's a bad day and, really, it's okay that I'm having trouble standing up and have no energy to cook or to read or to do anything but lie on the couch and breathe.

It is mindfulness that lets me have fun when I'm at a concert standing on my feet for four hours. Yes, I hurt. Yes, I'm exhausted. Yes, I will pay for it for days afterwards with stiffness and intensified pain and perhaps not even being able to get out of bed tomorrow. But also YES, the music is wonderful, my friends are fun, dinner afterwards will be delicious and, if I let myself, I can even dance for one or two songs.

There is a difference between mindful awareness and forced dwelling within the heart of the pain to identify and name each momentary spike. The difference is, with a pain diary I must live inside that pain constantly. With mindfulness, I can see it, feel it, let it go and move on to the next moment, even if the next moment hurts too.

To paraphrase Frank Herbert in Dune,

Pain is the mind-killer.
Pain is the little-death that brings total obliteration.
I will face my pain.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the pain has gone there will be nothing.
Only I will remain.

This, my friends, is living with chronic invisible illness.


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September 2013



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