#ItsNotAllInYourHead – a way to speak up when physical issues are called psychological

sadness-lightning-solitude-manWe have a real problem in medicine, these days (actually, we have a lot of them, but this is the one I’m talking about now). And we have a real problem in psychology. The problem is, actual physiological issues, actual medical conditions which are not fully understood, are being labeled psychosomatic — somatic problems which are created by psychological distress.

Use the  hashtag for Twitter, Facebook — and anywhere hashtags are used — to call out the examples of practitioners’ misuse of psychology to explain away symptoms, and mis-diagnosis of genuine physiological issues as mental health ones.

If you add comments to this space beginning with #itsnotallinyourhead and a title — like  My Doctor Told Me the Pain from Cancer Was Due to Emotional Distress — and then follow it with a brief description, I’ll post it to this blog, so the title gets picked up by Twitter, and people can share it on Facebook with the hashtag intact.

It may not solve the problem, but we can certainly make a point.

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Back in the saddle again

Okay, I’m ready to roll. I’ve had my time off, and I’m ready to head back into it. I’ve rested, reflected, taken care of some stuff that was gumming up the works of my head — got clear on things I am NOT going to be doing in the short term… and also found some really excellent reading material to study, to help me get where I want to go this year.

I’m making some pretty cool connections with new folks, as well as getting back in touch with folks I used to know. People want to connect, and it’s a welcome change. Last year was so insane with all the changes and drama all over the place, it seems like now people are settling in and getting their bearings.

I have a feeling this is going to be an interesting year at work. There are lots more changes on the horizon, and I’m sure there will be drama. But that doesn’t have to be a bad thing. People just need to keep their heads on straight — and that includes me.

Getting enough rest, keeping perspective, keeping really focused on things that truly matter, making a little progress each day… that’s what it’s all about for me, and it’s good.

Anyway, the day is waiting. I spent the weekend collecting a lot of data from my last year of headaches and other symptoms, so I can discuss with medical folks in the coming weeks. I’ll be refining the list of “whazzup” with my neuropsych tomorrow, so they can help me communicate better with the neuro I’m going to be seeing sometime — hopefully before too long.

Headaches have either damped me down or sidelined me, on and off, for the past year — including this past week, when I had a sick headache all day Friday. I’m still kind of out of it … of course, waking up really early today and not being able to get back to sleep doesn’t help. But I guess I was excited about going back to work. That hasn’t happened to me in a while. Imagine that… With any luck, I’ll be able to get some relief for the headaches — at the very least, better understand the sources and causes and what I can do about them.

Ultimately, what I seek more than fixes, is understanding. There’s a chance that nothing can be done — or the cures they propose are worse than the condition itself. In any case, I just need some help understanding the nature of what I’m dealing with — not doing scatter-shot attempts at relieving symptoms, when the underlying causes are still an issue.

Anyway, tomorrow I call. Today, I focus on getting back to work, answering all those emails, and getting on with the new year.

Onward!

All is calm, all is bright

The last few weeks have been pretty quiet, all things considered. Since getting back from Thanksgiving travels, things at work have been fairly chilled out andsteady — the re-org notwithstanding. I’m getting ready for a nice week and a half off work with time to pursue some interests without the pressures of time crunches, deadlines, and the like.

I’ll also be pulling together some details on my physical condition — possibly — for a neurologist who I may be able to connect with in the new year. I have good hopes about this, as my neuropsych has finally come through with a recommendation, and I think they’re a good possibility. I did some Googling and checking out their record, and I like what I see.

Then again, I’ve been confident before about my choices, and I chose wrong, so… only time will tell. And if I end up screwing things up again, then I’m really no worse off than I am now, which isn’t all that shabby. It’s painful and confounding and frustrating at times, but I’m managing. And there we have it.

Anyway, I don’t want neurology to derail my holiday time off. I’d really like to get into a steady flow and do some reading and writing on some projects I’ve got in the works. Some of them have been “in the wings” for many months, now, and I haven’t had the time and energy to finish them up. Between family crises and interstate travel, well, it’s been a demanding fall. Now, though, everything feels chilled out and quite calm, which is nice.

Finally. A real Christmas holiday.

I’m looking forward to it.

For all the calm, though, I’ve been feeling sad. I think the idea of starting to track my physical symptoms again and working with another doctor, is kind of bugging me. I’d almost rather just get on with my life. But I’ve been having tremors and sick headaches, and if there’s a way to deal with it all, so much the better.

Anyway, I’m getting an early jump on supper tonight — eating about 3 hours earlier than I did last night. I haven’t been getting much sleep, being so wound up and off my usual schedule. I’ve been exercising, which has been really good for me. And I’m still adjusting to it.

Well, whatever happens… happens.

The main thing is to just relax and get some rest tonight. Tomorrow is the last day I’ll work for the next two weeks, and for that I am so very grateful.

It’s all good.

Onward.

I think something is amiss

It’s not usually this bad

A couple of months ago, I had several episodes that really threw me for a loop. I had a couple of meltdowns and it felt like something in my head “popped”, and then I was numb and dumb for a number of days after that. I thought maybe I was having a stroke, but it didn’t seem like I was having all the symptoms, so I thought maybe it was a migraine. It’s hard to tell with me — I have so many sensory issues in the course of every day, it’s hard for me to sort out the exceptions from the rules.

Over the past several weeks, I’ve had some “jumpiness” in my left cheek, and for several days, a spot on the left side of my upper lip was twitching like a Mexican jumping bean. It was driving me crazy, but it came and went, so I didn’t want to make a deal out of it. Then, last night, I realized that my left hand is more numb than my right – I can feel things and I can move it, and I don’t seem to have any loss of muscle strength, but it feels a little numb, and I don’t have the same level of sensation that I do in my right.

Also, I almost cut the tip of my left index finger off, last week, when I was fixing supper. For some reason (and I never do this), my finger was extended, and I almost didn’t stop myself, as I was bearing down. I cut most of the way through the nail – fortunately at an angle, so it didn’t go into the flesh under the nail. And it freaked me out, because A) I can’t afford to cut off the tip of my left index finger — I need it for working on the computer, which is my bread and butter, and B) it’s very unlike me to not keep my fingers away from the knife while I’m cutting. It’s been years since I had anything like this happen to me.

Then, this morning when I was putting on my socks, I could not raise my left leg up as high as my right one. I just didn’t have the strength. I know I have had different levels of strength in my left and right, and I haven’t been able to lift one knee higher than the other for some time, but I can’t remember if it’s been the right one or the left I have trouble with. And it’s weird how I keep misspelling things.

So, I think I may need to get checked out. The only problem is, I don’t trust the hospitals that are closest to me, and the one my PCP is affiliated with has really sh*tty neurologists. I have dealt with them in the past, and the one in particular treated me like I was hostile, they kept asking about my history of drug abuse, and they basically just went through the motions till they got me out of their office. I’m sure they’re not a total asshole, but that day, they did a great impression of one.

The other problem is that I have gone through whole batteries of tests over basically nothing — just stress. I get diminished when I am tired, and I have been extremely tired, lately. I’m just going-going-going all day, every day, and it’s caught up with me big-time. So, I don’t want to go crying “stroke!” when it’s really just stress and will get fixed with a lighter schedule, more sleep, and taking it easier than I have been.

Fortunately, tomorrow afternoon I’ve got an appointment with a counselor whose office is closer to a nearby city that has excellent hospitals, including the one where I had my MRI and got checked out for possible seizure activity, several years ago. They’ve got an MRI on record with me, as well as an EEG, so they’ll have a baseline and I won’t have to request records from other hospitals. I have my appointment with my counselor at 5, then I’ll discuss the situation with them, and if it really seems like I need to get checked out, I’ll drive the extra 45 minutes to get to the hospital in the city.

I’ll need to prepare for this — make sure I have everything with me that I need — including my work laptop and stuff from home. I’m packing a bag, just in case. And I’m also packing up my cubicle tomorrow, because we’re moving to the new office building on Tuesday evening, so I need to have it all ready to go, in case I’m not in the office on Tuesday.

I just need to prepare. And make sure that my spouse is all set, in case I need to stay overnight, or things run late. Maybe I’ll go get some extra food today, to have us covered.

I’ve got a headache, but that could be anything. I usually have a headache. No surprises there. And concentrating on the thought that something might be WRONG, is not helping me.

I’ll check with my counselor tomorrow. And I’ll see if I can get hold of my neuropsych, too. It’s really hard for me to tell what to do, and how best to do it. I have a lot of responsibilities, and I need to keep up with them, because people are counting on me. It’s almost impossible to tell what’s a product of anxiety and worry and being all stressed out with concern, and what’s the real deal, so while part of me wants to go to the ER and get checked out, I’ve been there a bunch of times over things, wasting precious hours amongst sick people. And when all was said and done, I was told, “Oh, it’s nothing. You can go home now.” I get sick and tired of being treated like I’m malingering or am overreacting. I literally don’t know if what I’m experiencing is a legitimate problem, or not. I have had a lot of neck problems over the past year, which affected sensations on the left side of my body, so maybe it’s just that. It’s hard to know. There’s a lot of competing information coming up in front of me all the time, so how do I sort it out?

Anyway, I think I have a plan. I’m still walking and talking reasonably okay (that slurred speech and sensation of a drooping cheek isn’t much fun, but it comes and goes). I’ll put everything in place for what needs to happen, should I need to go into the hospital. I’ll get myself coverage, and I’ll make sure things are lined up, so I can just take care of business.

Like paying my mortgage. For some reason, I had direct deposit set up for one bank account, but not for my house mortgage account. I discovered that yesterday, when I was checking my bank balances online. So, I’m late on my mortgage this month. Fortunately I’m not terribly late, to the point of getting “love notes” from the bank. I set up the monthly deposit to go into my account regularly, so that problem’s solved.

I also discovered that I have $8,000 more in the bank than I thought I did. That’s enough to keep me afloat, if something keeps me out of work for a few months. It’s amazing how much money you can save, when you don’t pay your mortgage 😉 Of course, that $8,000 is all the money I have in the world for a safety net. Compared to the $400,000+ I used to have saved for retirement before my TBI in 2004, it’s sad. But it’s a hell of a lot more than I’ve had for a number of years. So, I am grateful for what I do have.

Oh, this is annoying. I can’t seem to spell. My hands keep typing the wrong letters. I need to take a long, hot shower, then lie down and get some rest. Take care of a few errands, then sleep for a few hours… or more. As much as I need. It’s Sunday. I’ve had my walk in the woods and my breakfast, and it’s turning out to be a perfect day for sleeping. Gray. Overcast. Drowsy. With a breeze blowing in the trees. Nice.

After I get some sleep, I’ll make my list. I’ll type up my symptoms from the past few months, and I’ll print out a copy, in case I need it tomorrow. Everything may be perfectly fine — just stress — but it’s not feeling fine, right now.

Whatever. Time for my nap.

Collecting my notes

Looking at my symptoms from the past month or so.

Funny, what happens when you pay attention.

All the little things that seemed strange… now looking like a pattern.

Yeah, I need to see a specialist about this.

Checking my stats from the past few days…

One of the things I really like about WP vs. Blogger is — I get better ideas about how people are finding me here.

I’ve been looking at how people find this blog, and I’ve found the following searches recorded by WordPress:

  • polytrauma
  • i’m a tbi survivor
  • interview doesnt go well
  • caffeine and mild traumatic brain injury
  • “losing track of conversations”
  • anxiousness lack of appetite trouble fal(ling asleep?)
  • losing one’s mind in injury to the brain
  • tbi ptsd
  • how do you know that interview did not g(o well?)
  • mtbi blog

Apparently folks are looking for information about jobs and brain injury and ptsd, which is right up my alley, since all three of these are very interesting, important and pertinent to me.

About PTSD, I have to say that just living each day as a TBI survivor (even a mild one) can be traumatic in and of itself. We live in a culture that doesn’t understand the issues, even though it’s impacted daily (and in very violent and extreme and negative ways) by TBI’s of all kinds. Tons of people have car accidents, experience whiplash, get knocked in the head. Lots of kids hit their heads during sports matches and are never treated. Battering and domestic abuse causes brain injury, as well, not to mention fights and brawls and drug/alcohol related incidents. And then we have the falls… don’t get me started.

That being said, dealing with a world that is impacted by TBI can introduce all sorts of trauma — from dealing with folks who have had injuries themselves, but don’t realize it, to dealing with people who have been victimized by TBI survivors and are “triggered” by your demeanor and/or actions. Also, when you’re living with a hidden disability, there’s the danger of over-extending yourself without realizing it. We live in a very go-go-go culture that’s not big on getting enough rest and eating right, so when we’re fatigued, we TBI folks can make poor decisions and do things we really shouldn’t – like driving too fast or too slow… like taking risks we normally wouldn’t. And that can lead to yet mor injury, in my experience.

TBI is much more common that most people realize, but because it has to do with the brain, most folks are just plain afraid to approach the subject. But knowledge is power, people. And what we know can really help.

It can also really help therapists or folks who are treating ptsd — there’s not nearly enough experience and education with regard to tbi in therapeutic circles, in my opinion. I think there may be a reluctance to factor in neurological issues, when doing psychotherapy, which is understandable, as neurology is a somewhat esoteric field — especially for LICSW’s and MSW’s and other sorts of counselors who don’t have medical backgrounds. But it’s really, really important to realize that tbi can — and often does — play a part in certain issues. So that the real problems can be addressed, instead of trying to track down the emotional root of some issue that’s actually neurological/physiological in nature. I cannot stress this enough. I could write a whole book on this important issue… and maybe someday I will.

With regard to coffee and tbi — I was being evaluated by a neuropsychologist a while back, and when he found out I’d had some coffee, he cut the session short and told me the results wouldn’t be accurate. So, measuring the performance of the brain on caffeine is not accurate, apparently, which tells me that caffeine may cause the brain to function artificially well. Or it can skew the performance in some way. That tells me that while coffee may be useful to me as a short-term solution to fatigue, ultimately, it may cause me to have “false” confidence… and possibly lead to more poor decision-making.

losing one’s mind in injury to the brain… Yes, sometimes it feels like it can happen. But learning about tbi and recognizing what’s “just your brain playing tricks on you” can go a long way towards easing the stress. I have found that the first step towards dealing well with my strengths is recognizing my weaknesses and learning not to step into those holes. It’s like walking down a dark, rocky, washed-out path over and over again… until you realize where the rocks and holes and roots and gulleys are, you’re going to keep stepping in them. Best to find out where they are, so you can walk around them and stop injuring yourself. You don’t have to be down on yourself about it, you don’t have to beat yourself up about it. Just learn where you’re less than perfect, and work with that.

You can’t fix something, if you don’t know it’s broken. And there are ways to fix — or at least address — some of the issues that come along with tbi.

As for interview stuff… Well, time generally tells if the interview didn’t go well.

Stay strong, everyone.

BB

TBI Symptoms “Laundry List”

Here’s a list of TBI symptoms I came across at Headinjury.com (http://www.headinjury.com/checktbi.htm). I’m in the process of running down through the list and identifying specifics about each of them as they pertain to me — and have, for many years. It’s pretty daunting, at first, but ultimately it’s good to have a detailed list of what the issues are, so you can directly address them as effectively as possible.

Persistent Intellectual Impairments

  • Memory problems

  • Difficulty concentrating

  • Attention Difficulties

  • Easily Distracted

  • Misplacing or difficulty tracking things

  • Difficulty making decisions

  • Difficulty solving problems

  • Difficulty understanding spoken instructions

  • Difficulty understanding written instructions

  • Difficulty finding words

  • Difficulty communicating thoughts / feelings

  • Unintentionally repeating the same remarks

  • Unintentionally repeating same activities

  • Stuttering or stammering

  • Difficulties doing simple math

  • Impaired abstraction or literalness

  • Mental rigidity

  • Deficits in processing information

  • Deficits in sequencing information

  • Difficulty executing or doing things

  • Difficulty starting or initiating things

  • Difficulty handling work requirements

  • Difficulty handling school requirements

  • Having to check and re-check what you do

  • Disoriented by slight changes in daily routine

  • Unsure about things that you know well

  • Difficulty learning new things

  • Doing things slowly to insure correctness

  • Decreased capacity for reality testing

  • Impaired ability to appreciate details

  • Impaired ability to benefit from experience

  • Inappropriate responses to people & things

  • Difficulty taking care of your self

  • Difficulty taking care of children

 

Psychological Consequences

  • Impaired sense of self

  • Fear of loss of control

  • Easily agitated or irritated

  • Easily startled

  • Feelings of paranoia

  • Spells of terror or panic

  • Feelings of depression

  • Feelings of shame or guilt

  • Persistent anxiety

  • Anxiousness or feelings of fear and dread

  • Feelings of discouragement

  • Withdrawal or social isolation

  • Feeling others not appreciating your difficulties

  • Feeling everything is an effort

  • Feeling inept or worthless

  • Laughing or crying without apparent cause

  • Worrisome thoughts won’t leave your mind

  • Making up explanations for things

  • Insensitive to others and social context

  • Diminished insight

 

Persistent Mood Disorders

  • Mood swings

  • Having urges to beat, injure or harm someone

  • Shouting or throwing things

  • Temper outbursts that you could not control

 

Persistent Physiological Impairments

  • Heart pounding or racing

  • Rapid pulse

  • Headaches or head pains

  • Increased blood pressure

  • Increased sensitivity to touch

  • Ringing in ears

  • Easily fatigued

  • Numbness or tingling in parts of your body

  • Weakness or loss of strength

  • Feeling tense or keyed up

  • Restlessness, unable to sit still

  • Lessened ability to perform physically

  • Decreased tolerance for alcohol and drugs

  • Appetite disturbances

  • Trouble falling asleep

  • Awakening during the night

  • Sleep that is restless or disturbed

 

Persistent Personality Alterations

  • Passivity, or submissiveness

  • Aggressiveness

  • Apathy, lack of interest or emotion

  • Overly sensitive

  • Discouragement or demoralization

  • Increased emotional distress

  • Chronic frustration

  • Grandiosity or boastfulness

  • Excessively talkative

  • Compulsive writing

  • Egocentricity

  • Childishness

  • Silliness

  • Overly responsible

  • Irresponsibility

  • Impulsively

  • Self-indulgent

  • Indiscreet comments and acts

  • Obscene comments or acts

  • Increased sexual activity

  • Decreased sexual activity

  • Increased shame or guilt

  • Religiosity

 

Persistent Neurological Problems

  • Sense of observing your self from afar

  • Altered consciousness

  • Slowed reaction time

  • Smelling odors that others do not smell

  • Hearing music that others do not hear

  • Making up explanations for things

  • Sensitivity to temperature shifts

  • Seeing dark spots before your eyes

  • Blurred vision, especially when fatigued

  • Double vision especially when fatigued

  • Diminished night vision

  • Difficulty relaxing

  • Twitching

  • Sensitivity to sound or noise

  • Sensitivity to light

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