Doctors: They’re just so far away from us

It’s hard for me to know what to say to doctors, and how to say it

In preparation for seeing a new neurologist in the beginning of next year, I’ve been listening to some physician podcasts, lately. It’s my latest “thing” I do when I have some free time to listen. I need to better understand doctors and how they think and talk, so that I’ll be better able to communicate with them, if I end up seeing them.

The podcasts are usually pretty short and I can get at least 20 minutes in, during lunch or while I’m doing busy work at the office.

I don’t really have that much time to listen to podcasts or watch videos, in general, because it seems to take me longer to “get” what’s going on, than I expect. And it’s a little discouraging to listen and expect myself to understand immediately, but have to either back up and listen again, or just let it go.

I think it’s harder when I can’t see someone talking. Watching videos, it is easier for me to get things. But again, it takes up a lot of time, and it’s a bit discouraging to feel like I’m falling behind.

Anyway, today is my last full day of work before my Christmas and New Year’s vacation. I’ve got a few things planned for next week… but not much. Most of what I’m doing is taking care of myself with my support group — seeing different folks who can help me in one way or another — and resting. And doing some work on the projects I have going. This is going to be a good time to get away from my routine that has me on-the-go all the time, and do some deeper thinking than usual.

Should be good.

One thing I’m going to be working on, is collecting my info for this new neurologist I’ll be seeing. I’ve been intending to see a neuro for about a year, now, and finally it looks like I’m going to connect with one. I have high hopes about this… but I don’t want to get myself too caught up in hopes. I’ve had things go wrong before, so I have to factor that possibility in.

Anyway, it will be good for me to just collect all this info, anyway, so I have it to talk to any and all of my doctors later on. I haven’t really discussed my headaches in-depth with my PCP — they told me to go see a neurologist, anyway.Β  It will be good for me to collect my info in one place… also for myself.

I tend to just disregard what’s going on with me, because there is so much going on, on a given day. And I’m kind of resigned to it all — the vertigo, dizziness, feeling sick to my stomach, always having a headache, the ringing in my ears, the noise and light sensitivity, the joint and muscle pain… it’s all one continuous “cloud” of background noise for me, and I just live my life in spite of it. I don’t let it stop me. It slows me down at times, but it doesn’t stop me. And I use it as a barometer to make sure I’m not overdoing it. More pain, more noise… that means I’m overdoing it and I need to rest. So, it can come in handy.

But some days, it just feels like too much, and I’m not all that sad about the idea of not living forever. “Eternal rest” sounds pretty friggin’ good to me, some days. Not that I want to kill myself (I haven’t felt that way in a few years, which is a positive development). But I don’t mind the idea of this whole “deal” not going on forever.

Other days, I manage to deal with it… and I have hopes for things changing for the better.

If only I felt like I could effectively discuss this all with a doctor. I really don’t.

Talking to doctors has never been my strong suit. Conveying the right information in the right manner has always been a challenge for me — I either gave them too much information, or not enough. Either way, I often end up looking a bit dense and malingering, like there’s not really anything wrong, so what the hell am I taking up their time for? Listening to the physician podcasts, I’m struck by how specialized their language is, and how differently they describe and conceptualize things. They have their own language, and with their own language, comes a different way of thinking about things — very, very different from how the rest of us think and deal with things.

Going to the doctor is like going to a different planet, sometimes. It’s a foreign place that often doesn’t seem to have anything to do with my everyday life. Doctors are often so removed from the flow of regular everyday life, with their entire systems being reshaped by medical school, their thought processes shaped by specialized terminologies and ways of looking at situations, and their social status being separate and apart from “the sick”.

They deal with extreme cases all the time, so of course they have to protect themselves. They’re human, just like us, and the medical school system seems to crank out professionals who are doctors first, and humans second. And if they never have any physical problems of their own… well, how can they really truly understand the situations of the people they’re working with?

It’s very odd. And it’s also perfectly understandable.

But even though I understand it, it still bothers me. Yes, I get how the stresses and strains and secondary trauma of medical training produces individuals who are pretty far removed from their patients, in terms of thought process, language, and deep understanding of the human condition, but it’s still pretty depressing. And I get very anxious when I think about trying to explain myself to the next neuro I see — if that ever materializes at all.

Who knows if it will? But whatever happens, I still need to track my symptoms and keep decent notes, so that if it ever happens, I’ll have something useful to convey.

Well, anyway, gotta get to work. The day is waiting.

Onward.

 

 

Each year better than the last – I hope

Looking back… looking ahead

Now that Christmas and Hanukkah and Winter Solstice have all passed, it’s time to start looking ahead to the New Year. Kwanzaa is still underway till January 1, and the Seven Principles that mark this time give me good food for thought, even though I don’t actually celebrate it formally. Yuletide is also underway till January 1 (or the 13th, depending what part of the world you live in), allowing everything to just slow down for time to reflect and look ahead to the new year.

I’m celebrating the spirit of Yuletide more than any other holiday this season. It’s been a quiet time, without a lot of travel, and minimal racing around to take care of presents and what-not. If anything, I’ve been pretty neglectful of others, this holiday season. But you know what? They’ve been totally neglectful of me, too, so we’re even. If anything, the past years have been about me and my spouse doing a hell of a lot more for them than they did for us — doing more travel, making more of an effort, going out of our way to keep everyone aligned and on track with coordinating our holiday activities. This year, we haven’t done all that — and guess what… nobody picked up the slack. So there you go — they must not care that much, so… what-ever.

It’s time to us to take care of ourselves for once.

And we’ve done just that. I’ve been in a pretty low-key frame of mind since before Christmas — all the excitement of work notwithstanding — so, it’s been a very “Yule-like” time. Things have slowed down. I’ve allowed them to slow down. I’ve taken time OFF from all the sense of obligation and duty and required activities, to just rest and relax and not race around like a chicken with my head cut off, as I did in prior years. I’ve done energizing things that are good for me, and I’ve been eating lots of new foods that support me and my brain, as well. I’ve cooked up some pretty excellent dishes lately, if I say so myself, and my spouse says I’m becoming quite the chef πŸ™‚

Looking back on the past year, it’s odd — I can remember bits and pieces of it, but I don’t get an overall sense of how the year was. I know it’s been challenging, and I’ve been actively looking for a new job for much of that time — especially in the past three months. At home, things have stabilized somewhat — with less undercurrents of stress and strain, but some extreme meltdowns that have taken a toll on my marriage. I’ve been through a lot of intense challenges with my spouse, including issues with money and infidelity and physically unhealthy choices. All in all, though, I think we’re on the up-swing, and taking time out from all the travel to see family, as well as me getting my own “house” in order, has benefited us a great deal.

I feel stronger and more stable than I have in a long time. Perhaps ever. And yet, there’s a constant sense of confusion and disorientation that is always in the background. I am more functional than I can remember being in a good long while, and the circumstances of my life are leveling out and becoming more “structurally sound”, but at the same time, I’m in a fair amount of general pain much of the time, I have tremors and shakes, and my brain is definitely not firing on all pistons. I feel like I’m maybe at 65% on a regular basis. 85% if I’m lucky.

And that makes me sad.

But I think perhaps I am acclimating to the instability. I’ve decided I’m going to just get on with my life, even though I can’t seem to get rid of the memory problems, the sleep difficulties, the constant sense of fatigue, confusion, distractability, getting things turned around, and getting lost and not knowing where I am for a few minutes at a time… and more.

My solution is to just keep going and not get sidetracked and depressed by what’s going on inside my head. If I can just keep going, keep working at things, and do my best to learn from my lessons and try again, this all doesn’t need to hold me back permanently. It might slow me down, but it’s not going to stop me.

I’m also coming to terms with the idea of not being Alpha in every situation at work — and beyond. At work, I have been long accustomed to being Alpha and being in a leadership position of some kind. But now that things are shifting and changing at work, I’m not sure if this is going to last. There are so many people at work who are a hell of a lot more possessed by the demons of blind ambition and greed, and I just can’t see competing with them around the clock. There’s all sorts of politicking — and if it takes politicking to get ahead, then I’m going to step back and not engage with that, and allow myself to simply be happy in the position where I am.

Now, I don’t for a minute expect that I’ll stay in that subordinate position for long, if I get the attention of the right people who recognize what I’ve got to offer. I do want to get ahead. I need a raise. I need a promotion. I need to really put what I know and have learned into action. But I need to be smart about it and not just charge forward into the gap, without understanding what’s ahead of me. If a promotion means I’m going to have to travel all over the world and not be home more than two weeks out of every month, then I’ll pass. There is that possibility. But who can say? Who can say…

Anyway, I can’t invest too much time and effort in thinking about what may be… inventing all sorts of dramatic stories about what that will mean for me. Who knows what will happen? I need to conserve my energy, because I continue to have some limiting difficulties — the headaches and the joint pain which suck a lot of energy from me… the confusion and disorientation that keep me guessing and demand even more energy from me to keep up and do my part… the vertigo and tinnitus that are just so damned distracting… and the attentional and distraction issues that interrupt what I’m doing with a regular dose of screw-ups.

I need to keep going, and in order to do that, I need to take good care of myself and also practice things that will keep me sharp and make me sharper, while not using up a lot of time.

  • Ride the exercise bike or move and stretch, first thing in the morning to get my blood pumping and clear out some of the sludge that’s built up. (10 minutes a day)
  • Practicing juggling one thing at a time, tossing it into the air, and then catching it.Β  I do this with my toothbrush each morning, to improve my eye-hand coordination and also my focus and attention. (1-2 minutes a day)
  • Working on my balance and leg mobility with exercises on a daily basis. (5 minutes a day)
  • Doing my measured breathing that regulates my heart rate and keeps me calm. (5-10 minutes a day)
  • Allowing myself to really, truly relax on a regular basis — just letting myself collapse into bed or on the couch, and letting the fatigue just wash over me. (The first few minutes when I go to bed)
  • Increase my dopamine levels by eating more foods with L-Tyrosine and also taking the supplement… and also taking Oil of Oregano, to keep my body from breaking down the dopamine and seratonin in my system. (In the regular course of my day.)
  • Drinking plenty of water to flush out the sludge.
  • Studying anatomy and physiology, to help me better understand the inner workings of my physical life — and how to improve my health.

All these things are really good for me — and I can work them into my daily routine. The biggest challenge is figuring out how to do them as a regular part of my life, without up-ending my routine. That is totally do-able, because I can find time when my breakfast is cooking, and I’d just be sitting around anyway.Β  I just need to do it. And I need to not just take things for granted, because I’ve been doing them a while and it feels like I don’t need to do them anymore.

That’s probably the biggest threat to my well-being in the new year — getting complacent and just assuming that “I’m good” and I don’t need to keep up my routines and activities. That state of “good” can rapidly decline, as I’ve learned time and time again.

So, as I look forward to the new year, I’m thinking about the basics. Focusing on that, and not making myself crazy with a whole lot of dramatic schemes and Big Plans, like I have in the past. I’m settling in, in a way, and it feels pretty good. I just can’t get complacent. Gotta keep working at it. Each day.

Well, speaking of working at things, I need to get a move on and get my ass in gear. I have some errands I need to run before everything closes for the day.

Onward.

An answer right under my nose

Crazy me… Here I sit in my study, periodically looking up at my calendar, now and then, to remind myself what the date is… I have a “zen art” calendar that has pictures and sayings on it, and I have tended to contemplate those sayings to help keep me on track. But in the past month, for some strange reason, I haven’t looked that closely at the saying on my calendar.

It is:

So whatever you do, just do it, without expecting anyone’s help. Don’t spoil your effort by seeking for shelter. Protect yourself and grow upright to the sky; that is all.

Yeah, that.

Just the answer I’ve needed over the past months, as I’ve been struggling with my brain’s limitations. Hidden disabilities… Invisible problems… Issues that I never had to worry about before… Difficulties others do not know I have and don’t expect me to have… Falling behind and forgetting to keep on top of myself and my activities and my state of mind and heart and soul, not to mention body… I’ve hassled and hassled over a lot of stuff, especially as it’s become more and more apparent to me.

I’ve been getting some help from folks along the way who supported me the best way they knew how — by offering me their sympathies and lending me their ear. And it’s helped to know my difficulties were not only in my head, and that someone else could recognize them and offer me encouragement — as well as correction.

But I had a revelation while I was out working in my yard this morning. I was raking up deadfall from the winter, spreading organic fertilizer (it’s dried chicken manure, but ‘organic fertilizer’ sounds so much more glamorous) on my grass, and uncovering the shoots and leaves of tiny plants looking for the sun, and it occurred to me that something was shifting with me. Something was changing. Along with spring. Along with this new job I have. Along with all the changes going on in the world. Something in me had shifted.

Suddenly, I felt ready to fight on.

Maybe it was watching HBO’s special PACQUIAO/HATTON 24/7, last night, which follows two boxers training and living their lives, leading up to their boxing match next month that reminded me what I fighter I really am. Maybe it was seeing the “old dawgs” who had been fighters and were now trainers, who were living their lives just as they were, pugilistic damage notwithstanding. Maybe it was watching the training, seeing the fighters and all the others around them going through the motions of preparing for the face-off.

Maybe it was the last three weeks I’ve had on the job, finding out just how much harder I have to work at this learning business. Maybe it was figuring out (yet again) that I need to not focus just on job security, but on employment security, and not let the political scene at work distract me from my skill-building and practice. Maybe it was getting to a point at work, where the folks I work with, side-by-side each day are starting to include me in their conversations. Maybe it was being told that my contract may be up sooner than I expected, so I may have to go out looking for a new job, sooner rather than later.

Maybe it was the unseasonally hot spring morning. And the mayflies swarming me. And the physical labor of raking and lifting and hauling and pushing and wheeling. And the stink of chicken manure dust on my jeans and the sweat streaming down my back. And the realization that I haven’t taken nearly as good care of my house and my yard, as I should in the past few years, and that sustaining a mild TBI that threw me for a loop is no longer a viable excuse, now that I know about it, I know about my issues, and I am able to do something about them.

Maybe it was the acceptance of the fact that I’m probably going to be really, really tired much of the time I’m awake… and reaching a conscious decision to just learn to live with that and not let it stop me. I want to live my life. I want to have a full and complete life, and I’m not going to get that lying in bed. I am usually fatigued. Even if I do take two-hour naps on my days I’m at home, I am once again fatigued in a matter of hours after I wake up. That’s just how it is. Of course, I need to not endanger myself in the process and end up asleep at the wheel or convulsing with stress/exhaustion-induced seizures, but underlying fatigue is something I’ll likely just have to live with, the rest of my born days.

The headaches and general body pains and joint issues and ringing in my ears will likely be with me the rest of my born days, too. Nobody I’ve talked to has been able to figure them out or give me anything to ease them, and I just don’t have time to accommodate modern medicine’s enthusiastic cluelessness and get on with my life. None of my doctors have time for me. They literally don’t. They won’t take more than 20-30 minutes talking to me, and they sure as heck aren’t going to invest more time in understanding my underlying condition(s) from a wholistic standpoint. That’s not their thing, and I can no sooner expect them to change their ways, than I can expect the deer to stop eating my shrubbery towards the end of a deeply harsh winter.

I’m perfectly capable of functioning, even if I’m exhausted. And have a blazing headache. And creak and groan with every movement. And am having trouble keeping my balance. And can barely hear what’s going on around me for the whining roar in my ers. Heck, I’ve been doing it for years — and a lot longer than since my fall in 2004. I’ve been dog-tired, hounded by auditory static, and wracked by pain and for years. And yet I fight on.

Yes, I fight on. It’s what I do. It’s who I am. It’s what I’m about. I have friends who are all into peace and love, and that’s fine. I value their friendship, and they’re good people. But I’m a fighter. And while peace and love are wonderful, I’m not the kind of person who lets the absence of peace and love just stop me. If I did, I wouldn’t be where I am today. And I wouldn’t have been out today, working on my yard and my house on my day off work. I might have been out and about, but I would have been working on something that was the property of someone else. And probably feeling pretty sorry for myself, too.

Working up a sweat today, I realized that in the past several weeks — especially in the past few days — I’ve cycled around again to a point where I am looking less and less for sympathy regarding my condition; less and less, I am seeking assistance from others. Less and less, I’m asking my partner to pick up slack for me. Less and less, I’m looking to my co-workers to cut me slack. Less and less, I’m expecting my job to be secure and my work situation to be ideal. Less and less, I am in need of perfection — or accommodation, in order to succeed.

More and more, I’m looking more within for what I need. More and more, I am starting to look within for my own resources to see where and how I can help myself. More and more, I’m “giving up” on the medical establishment in a fairly good-natured way, allowing them their limitations, while not letting them hold me back or get me down. More and more, I’m just buckling down and doing the job in front of me, and it feels pretty good.

Now, on and off for about a year, I’ve been on a kind of quest to find out what issues I have and figure out what they mean to me. It’s been disconcerting and upsetting and unsettling to find out that in some ways I’m a lot worse off than I ever guessed. And it’s put me in a more vulnerable place than I care to be. I’ve been learning to reach out and ask for help. I’m also learning to see where and when I actually need help. That might not seem like such a huge deal, but for me it is.

But I have to say that trying to get others to help me is a bit of a losing proposition for me. I have a heck of a time articulating what I need, and frankly, I’d rather do a lot of things myself, than look to others. I have a hard time not only figuring out what I need from others, but also telling them what that is. And then I have an even harder time making sure they get it right. It’s just not where my skills lie.

And seeking for shelter in the face of adversity is also not in my nature. The “shelter” that others offer me is all too often not suited to me — it treats me like a victim, a hapless individual who has been acted-upon, rather than someone who acts upon my world. I have tried to find shelter with friends and therapists and family members and co-workers for much of the past year, and it’s just not working anymore. Not anymore.

So, I’m sorta kinda giving up on that. Doing for myself is really my first nature, and I need to get back to that. Blazing a trail through the jungles of my life is also innately me, and I need to get back to doing that with gusto. Yes, I have sustained multiple mild traumatic brain injuries over the course of my life. Yes, my difficulties have wreaked havoc with a lot of aspects of my life. Yes, things that others find really easy are very difficult for me, and things that others find difficult are quite easy for me. I’m at odds with the world. Always have been, most likely always will be.

And I’m okay with it. It’s just who I am. And I’ve been separated from that truth about myself for too long.

Now, I’m doing something about that. I’m getting back to just being who and what I am. I’m getting back to doing by just doing, rather than noodling everything through, up-down-left-right-inside-out, and mucking it all up in the process. I’m getting back to being okay in some ways and not-okay in others, and allowing that to be what is. I’m getting back to doing what I do, exactly the way I do it, and just letting myself be.

So whatever I do, I’ll just do it, without expecting anyone’s help. I won’t spoil my effort by seeking for shelter. I’ll protect myself and grow upright to the sky; that is all.

Yeah, that.

Nap a little now… Sleep a lot later

I finally was able to get a bunch of sleep over the past 12 hours. I got home from work yesterday, and I was utterly exhausted. I could barely stop at a gas station to top off the air in my car’s left rear tire (which has been low for some weeks, but didn’t fully catch my attention till I really took a close look at it yesterday). Once home, I took a long, hot shower to take the edge off the pain I’ve been in and help me relax, then I debated whether to stay up and spend time with my partner and hit the hay early, or just take a little nap to take the edge off my fatigue.

Not feeling particularly … “viable”… I opted for the nap. I would have been lousy company had I stayed up, anyway, and why do that to someone who’s also had a really long day? I crawled into my “cave” — the quiet guest bedroom that’s at the back of the house that is my own little retreat at home — and lay down around 6:30 last night. I planned to get up in an hour or so, when supper was ready, but when my partner came to rouse me, I couldn’t budge. I couldn’t even fully wake up. This was probably around 8:30 or so… My beloved decided to let me sleep, as I’ve been so edgy and antsy, and it was abundantly clear to them that I needed to rest.

‘Round about 10:30, I woke up a bit — had to use the bathroom — and I joined the rest of my household for a little warmed-up dinner. I generally try to eat supper before 8 p.m. (which I know is probably too late — should probably be before 7) but last night was different. I was a little concerned that I might not be able to get back to sleep, if I stayed up and had “dinner” and watched a little television, but I gave it a whirl.

And wonder of wonders, I was actually tired — yawning — the rest of the evening. I headed back to bed in my cave around midnight (I have a long day ahead of me today, and I need uninterrupted sleep all by my lonesome in my cave when I’m having trouble with insomnia). I did write a little in my journal about some PTSD stuff that’s been coming up for me, lately, but when I lay down and relaxed, I went right to sleep, which is nothing short of a miracle.

I did wake up earlier than I wanted to, this a.m. — I had hoped to sleep till 7:30, but I was up before 6:00, as usual. Oh, well. At least it was closer to 6:00 a.m. than 5 a.m. Maybe my body is preparing for Daylight Savings Time, which begins this weekend. And this way, I have time to post some info before my day starts. Not a bad thing. At least I got another 5-1/2 hours of sleep between my nap last night and right now.

One thing I noticed when I woke up this morning, was that I was extremely tense. My body felt like it was spring-loaded and ready to spring into action. This is not new for me. I usually feel this way when I’m waking up, and try as I might, I cannot seem to release the tension, first thing in the a.m. I think that’s what’s been waking me up — being really tense and tight, first thing in the morning. It’s almost like my body is gearing up for the day, in advance. Like it knows I’m going to be waking up soon, and it’s getting all charged up in advance.

I have a hard time, sometimes, getting out of bed. Literally and figuratively. Not only do I have to muster the courage to get out of a warm bed into the cold air, but I tend to not be very coordinated, first thing in the a.m. Especially when my vestibular system/balance is off, I can be very wobbly and sick-on-my-stomach, when I get out of bed. I am sometimes not very coordinated about it — I hit the floor a lot harder than I intend, and I wake up my partner, which is a PITA for both of us. So, I tend to tense up and gather myself physically — and mentally — before rolling out of bed.

You wouldn’t think getting out of bed would be such a challenge, but some days it’s just the first of a long series of difficult things I’ll have to do.

Another thing that I noticed this a.m., when I was waking up very tense, was that when I relaxed, my body started to ache and throb. My joints have been giving me a lot of trouble, lately, as has my lower back. It’s not really muscular — it’s along the areas where my muscles connect with my bone, like along the top of my pelvis in my lower back — the iliac crest, I think it’s called. My shoulders and neck and hips and back just ache and throb and burn. And it gets worse when I relax.

About 20 years ago, after a car accident that didn’t seem like that big of a deal (but sent me spiraling downward — I couldn’t understand what people were saying to me when they talked, and I couldn’t keep my job and I started drinking pretty heavily). I started having terrible, awful problems with debilitating pain. It started in early 1988 and persisted for about five years — eventually the pain got to the point where I couldn’t hold down a permanent job, and I literally couldn’t get out of bed in the morning. At the time, fibromyalgia (as well as chronic fatigue syndrome) was not widely recognized or well-understood, so even though I had a lot of the symptoms of it, then, I was never diagnosed. Comparing notes with others with FMS (or “fibro”), I see an awful lot of similarities, so I’m “lumping” my experience under the FMS banner, sans official diagnosis. I’m not sure I’ll be able to work up the nerve to see a doctor about these symptoms — my ordeal 20 years ago was pretty gruelling and debilitating in and of itself, and nothing the doctors told me or subscribed for me really helped. Ultimately, I made some lifestyle changes — stopped smoking, started taking better care of myself, quit pushing myself so hard all the time, changed my shoes from hard-soled boots to soft-soled loafers, and I started eating right — and the pain dissipated considerably. I’ve been in pain, off and on, over the years, and I tend to use it as a barometer for how well I’m taking care of myself. I must not be doing a very good job of that, lately, ‘cuz I’m in terrible pain, these days.

Then again, it could be the weather, too. All I know is, I’m in a lot of pain, these days, and it’s keeping me from sleeping. And relaxing. I think in some ways, the relaxing problems bother me even more than the sleeping ones.

How much does that suck… I mean, it’s bad enough that I haven’t slept, and that my days have been crazy-busy, and I’m having trouble with figuring out how to deal with my work. But when even the simple pleasure of relaxing is off-limits to me, and it actually increases my pain and discomfort, well, then I start to feel like the Universe is really out to get me.

I hate to be a whiner, so I’ll stop right now. But let the record show that I’m not really happy about not being able to relax without pain. I’ll have to work on that. Use my acupressure points, drink more water, exercise more… maybe work some exercise into my morning routine to release some of the tension before my day starts. And quit eating so much sugar!

Well, the day is waiting. I would prefer to not be in pain and to be able to get through the day without exhaustion and tension, but you can’t have everything. At least I’m able to get through the day on my own steam, and I have plenty of activities to distract me from my discomfort.

Life, on the whole, is not bad at all. Onward…

TBI and Fibromyalgia

I just found this blog talking about Fibromyalgia and TBI — Fibromyalgia Haven. This is of real interest to me, as this may be an issue for me, as well. I’ve been dealing with a lot of stuff over the years, including debilitating, chronic pain, but I never seriously dug into the fibromyalgia piece of it. I was provisionally diagnosed with an autoimmune disorder, back in 1987, after I started having a skin rash and intense joint pain, confusion, and various problems. It was also after a car accident that scrambled my thinking (I couldn’t understand what people were saying to me — I was intensely confused), and I ended up quitting my job so I could devote myself to drinking full-time.

Over the years, I have coped with the pain in various ways, primarily through what I call “analgesic stress,” and it’s been more or less effective. I just tend to block out the pain, now, after never getting any substantive help from doctors for my problems. I know folks with “fibro” but I never really considered it might be a factor with me — until I recently came across info about skin rashes coming with fibro. That rash that wouldn’t respond to ointments was what led doctors to diagnose me with that other condition — which was never substantiated by any of the many (and I mean many) blood tests I took over the years.

I don’t have time to go into this now, but I did want to link to the blog, for your reading enjoyment.

Better today… of pain and ptsd

Well, I got to bed by 10:00 last night, and I was able to sleep through till 6:30 or so, which is an improvement over what I’d been able to do over the last weeks.

I’ve been kept up by anxiety over what my neuropsych evaluation is going to reveal — that’s coming up this week — me being terribly afraid that I had given wrong information or I just couldn’t think my way through certain things… I’ve been second-guessing myself for days and days, wondering if I answered as accurately as possible… of if maybe I’m more crazy than head-injured… or that my head injuries have led to some sort of mental illness that’s invisible to me because of my anosognosia… or maybe I’m just on this wild goose-chase that will end up being all for nothing.

I try to be level-headed and logical about this and remind myself that my neurpsych has been doing this for many years, and they have certainly seen worse cases than me. But still, not being able to be a full participant in the process and being a subject of examination and enquiry… well, that makes me uncomfortable, and even if I do trust the doctor. I just don’t know what to expect, and I cannot manage my wild rang of emotions, if I don’t know what I’m managing for.

Fortunately, I do feel better this a.m. — not so much pain, not so much tenderness. I got a bit of a massage yesterday p.m., and it really, really helped. Even if it was painful at times — I don’t care. Short-term pain for long-term benefits. I’ll take the pain in the short-term, if it will help me feel this much better in the a.m.

I still have discomfort when I move – especially in my hips and lower back. And my elbows are still sore. And my thighs are still tender. But I can push up my sleeves, so they’re not chafing my wrists, and my body isn’t screaming so loud I can’t hear myself think.

I tried the Arnica yesterday. i can’t say I noticed an immediate effect, but I’m going to keep trying it — 4 tablets dissolved under my tongue 4 times a day, for a few days. I’m going to take it again after I finish my cup of coffee. (I’ve heard that you have to be careful taking homeopathic remedies when you’re eating or drinking. It’s my understanding that the remedy needs to be the only think you can taste… or I could be wrong.) I’m not off caffeine entirely — that would be too much. But I am cutting back. I only had one cup yesterday, which I think helped me sleep.

This arnica experiment is definitely going to be totally screwed up by my other changes I’m making. In a “real” test, the only thing I would change would be taking the arnica, not getting more sleep or changing my diet or getting more exercise. But dude, I’m in pain, and I need it to stop, so I can get on with my life.

Thinking about the role that pain has played in my life, I think there’s a definite trauma aspect to it. I have friends who specialize in treating trauma, both in medical and psychological environments, and they talk a lot about it. They also love to tell me I’m a “trauma survivor” — having had a whole bunch of accidents that left me progressively more impaired, as the years went on, along with the social, interpersonal, and physical after-effects of my impairments that haven’t helped me get by in the world.

And since I have a history of trauma — physical, as well as psychological — I have to admit I do show signs of PTSD.

Over at Wikipedia — http://en.wikipedia.org/wiki/Posttraumatic_stress_disorder — I found this (note: my comments are in italics):

The diagnostic criteria for PTSD, per the Diagnostic and Statistical Manual of Mental Disorders IV (Text Revision) (DSM-IV-TR), may be summarized as:[1]

A. Exposure to a traumatic event – multiple head injuries over the years, along with other accidents and fights/clashes with people that threatened my safety
B. Persistent reexperience (e.g. flashbacks, nightmares) – I’ve had lots of them over the years… where do I begin?
C. Persistent avoidance of stimuli associated with the trauma (e.g. inability to talk about things even related to the experience, avoidance of things and discussions that trigger flashbacks and reexperiencing symptoms fear of losing control) – some things I just will not talk about… you can pump me for details till the cows come home, but I’m not talking about certain things that have happened to me, unless I can know that it’s not going to ruin my life, if I do
D. Persistent symptoms of increased arousal (e.g. difficulty falling or staying asleep, anger and hypervigilance) – well, yuh, I’ve had more restless nights and being jolted awake at 3 a.m. with my heart racing and my body soaked in sweat… than I care to think about
E. Duration of symptoms more than 1 month – try months and months… sometimes years later, after the initial event is over
F. Significant impairment in social, occupational, or other important areas of functioning (e.g. problems with work and relationships.) – just ask my friends, family, and co-workers… just ask my 17 former employers

Notably, criterion A (the “stressor”) consists of two parts, both of which must apply for a diagnosis of PTSD. The first (A1) requires that “the person experienced, witnessed, or was confronted with an event or events that involved actual or threatened death or serious injury, or a threat to the physical integrity of self or others.” The second (A2) requires that “the person’s response involved intense fear, helplessness, or horror.” The DSM-IV-TR criterion differs substantially from the previous DSM-III-R stressor criterion, which specified the traumatic event should be of a type that would cause “significant symptoms of distress in almost anyone,” and that the event was “outside the range of usual human experience.” Since the introduction of DSM-IV, the number of possible PTSD traumas has increased and one study suggests that the increase is around 50%.[48] Various scales exist to measure the severity and frequency of PTSD symptoms.[49][50]

Now, this is all pretty thick stuff for me to get into. Personally, I don’t feel like I can take on much more to process, other than just dealing with my own pain… but I have to say, the pain is worse, when I’m feeling the after-effects of some past trauma. When I’m dealing with people who have really physically hurt me in the past — like adults who used to really knock me around — or I’m interacting with people whom I have hurt in the past because of my bad behavior and poor social integration.

When I think back on being a kid, I remember a lot of pain, both from internal sources and from without. My pain issues date back to fairly early childhood – I was not a very limber kid, and I had a lot of difficulty doing things that other kids could just do, like touching toes and climbing and jumping and doing cartwheels and such. I had a lot of trouble with my balance, and I couldn’t do a somersault until I was about 5 or 6. I can’t remember exactly how old I was, but I do remember the day I did my first “real” somersault — I didn’t fall off to the side, but was actually able to just roll right over and keep my balance. When I tried to stretch and extend, like other kids could, it was very painful for me. But I kept trying, and I just forced myself to stretch and extend… until the pain was too much, and I had to stop… which was usually far short of where I wanted to be.

I wanted so much to participate, to take part, to be a part of what was going on. I hated being on the outside, not able to do what other kids could as easily as they could, so I pushed myself — very hard. There was a lot of pain, but that was just the price I paid for being able to be a part of what was going on.

The other source of pain was from the outside. I was raised by parents who didn’t know how to relate to me. I tended to get over-stressed and over-extended with all the stimuli going on around me (including the pain), and they tended to discipline me. Grab me. Jerk me around. Take hold of my arms and pull me to where I was supposed to be. It was excruciating, and it was shocking. My memories of childhood are full of instances where my mom would grab me out of the blue — I wasn’t following what was going on, and I didn’t understand what she wanted me to do, so she would yell and/or grab me and pull/push me to where I was supposed to be. With my sensitivities, it was like just being pounded out of the blue, time and time again. I could never prepare for it, I could never brace for it. And I didn’t really “get” why it was happening, a lot of the time.

I wasn’t able to explain my “bad” behavior to them, and they didn’t seem much interested in finding out if I was having problems, or if I was just a bad kid who needed discipline. I think, because of their religious orientation and the role that my very religious grandparents had in our lives, they “went with” the religious explanation that I was a “sinner” and that “sin” or the “devil” had taken hold in my life, so I needed to be disciplined to stop my acting out.

So, they did. I got called a lot of names, when I was little, because I couldn’t keep up cognitively or physically — spaz, space cadet, bugger, doofus, spastic… that was my dad. My mom preferred to call me pathetic or disgusting or asinine (asinine was her favorite). I was actually shielded from their wrath a lot, because I didn’t understand till I was 7 or 8 or 9 (?) that they were actually talking to/about me. I thought they were just saying what they were saying into the blue. It didn’t occur to me, till I had been in school for a few years, and other kids were calling me names, that my mom and dad were calling me names, too.

Actually, come to think of it, it didn’t occur to me that my mom was calling me names, till a few years ago. Somehow, being mistreated by my mother is a lot harder to take than being mistreated by my dad.

Even when they showed affection, my family’s hugs and touches were extremely painful. My family — for whatever reason — loves to give big, hard hugs, and it hurts like crazy when they do! I don’t know what it is that makes them think it’s okay to just throw their arms around someone and squeeze so hard… or maybe they can’t really feel it, themselves, so they have to have hard hugs and forceful contact, to even tell someone is there. My grandparents were hard huggers, and my mom was/is, too. She loves to reach out and grab people as a sign of affection, which is a double-whammy — I don’t want to shut her out, but I cannot take the force of her contact. Just over Thanksgiving, she was walking by me, and she reached out and grabbed my arm as a sign of affection. And when I was getting ready to drive home, with the weather being as rainy as it was, she got scared for my safety and she just threw herself at me and hugged me really hard, which really hurt.

I still haven’t figured out how to tell people that when they touch me, sometimes it feels like they’re pounding on me. It’s embarrassing, it’s troubling, and I dread people knowing just how much pain they’ve caused me. Being in pain is bad enough, but then “spreading it around” by telling others about it — and telling them there’s nothing they can really do, but keep their distance — is just awful. I’ve done it before, and it’s awful. Awful to be pushed out to the margins. Awful to be forced to push people away. Awful to have to hold them at arm’s length and never let them close, without pain.

Thinking about growing up in constant pain, raised by people who repeatedly hurt me terribly, is definitely not easy to take. I have to tell myself my parents weren’t fully aware of the effect that their behavior was having on me, and that if they’d known what it was like for me when they grabbed me or hugged me, they would not have done it. I have to tell myself that they had no idea, that they were innocent. Believing that my parents would intentionally harm me, is more than I can process right now.

But it’s probably worsening my pain, to hold back from that belief. Now that I’ve been away from them for a whole day, I’m starting to relax, and I’m starting to be able to adddress my pain. I think when I was in the midst of it all, I was so shut down that even if I’d been in terrible pain — which I may have been — I wasn’t aware of it. I was up in my head. I was too busy talking. I was too busy trying to stay out of arm’s reach of both my parents.

I rarely notice until days after the fact, but when I am in the midst of family at holiday/Thanksgiving time, I hold as still as possible for long periods of time — both as an attempt to not draw attention to myself, and to keep myself from acting out when I get stressed. When I’m stressed, my brain stops working really fluidly, and I end up needing to take more time to explain myself. But when things are all wild and woolly, like at my parents’ place at Thanksgiving, I don’t have the time to fully explain myself, and I end up hurting people’s feelings from a poorly told joke, or an attempt to josh around with others, and then I start flashing back to all the other times I said/did things that people took the wrong way.

Yes, I hold very, very still during the holidays… both for my own protection and that of others.

And it probably doesn’t help my pain — because of my rigidity and my disconnection from my body.

And it doesn’t help my PTSD. Because I go back to that place where I’m on auto-pilot, where I’m just keeping my head down and keeping moving, where I’m just doing what’s in front of me, and not aware of whether or not I’m hungry or tired or anxious or stressed. And when I’m not aware, when I’m just soldiering through (as I do so well!), I tend to push myself even harder — do more stuff, take on more tasks, be more manic, be more forceful, be harder on myself and add more things to my to-do list — and that cuts in on my sleep, it cuts in on my rest, it cuts in on my physical well-being.

And I have pain. Lots of it. Tearing, ripping, screaming, shooting, chafing, burning, crazy-making pain.

So, in a way, the pain is like my barometer for how I’m doing, stress-wise. It tells me if old stuff is coming up that’s making me do things and make choices that aren’t healthy. It tells me if I’m falling back on old patterns, letting my fears and anxieties and old hurts stop me from living my life. It tells me if I’m tired — and it tells me that I’ve let myself get over-fatigued and ill-nourished.

It’s an objective measurement of how I’m doing psychologically and physically. And it gives me a great “excuse” (in my mind, when a simple reason won’t suffice) to step back and cut out all the shit I’ve got on my plate… focus in, take care of basics, talk over my issues with my therapist, and make sure I get plenty of rest. It tells me, loud and clear and in no uncertain terms, that I’m totally f’ed up, and I need to stop doing what I’ve been doing, and just take a break. Take care of myself. Have a long, hot shower. Take care of myself. Now.

Unless I do, I’m going to stay in pain. That’s just the way it is. And it’s my choice.

In a way, pain is my friend — but only because it’s my mortal enemy.