New Years Resolutions

Are tricky things for sure.  I could use some postive reinforcements and some realistic goals.  The key to resolutions is that they be realistic, which is tricky.  I like to take a large goal (say losing weight) and making it smaller goals like (losing a few pounds a month, or eating regularly, or exercising on the Wii).  Makes it much more manageable.  I had a good day at work today, since I did not have a migraine At All, which gives me back a taste of confidence.  I like to think if I can manage the self-loathing and over-over-thinking such that I rationalize myself into the unreasonable, then I can cope with pain and work.  Emtional issues, however, are tricky, the moment you think you have a handle on them, they get all slippery and twist around.  So I do not want to make any extreme resolutions.  I need some optimism to balance out those bouts of insane pessimism.  So I like to think of making more than one resolution, of small things, to create a plan of action in order to survive a year, rather than just suviving day to day.  It is way too easy to get into survival mode, just getting through the hour, the day, the week such that you never accomplish anything other than what is absolutely necessary... but then again, survival mode works some days.

So lets lay out some resolutions that will cater to my overall health while I focus on my emotional stability, because either way I look at it, I will be at work full time this year, so best make a plan to ensure it is better than it was.

1) Eat regular meals a day, including a yogurt and fiber- eating regularly seems like an easy thing to do, but when you suffer from chronic pain sometimes you suffer from lack of appitite, and when you suffer with chronic migraines sometimes that means loads of nausea.  Fiber and yogurt are the only way I have found to manage my IBS-D, or the digestive issues that come with FMS.  It makes everything work just right, which is better than feeling like I have the stomach flu every couple of weeks.  This goal is easier to maintain when I am working, because of the enforced routine.

2) Take a regular vitamin D and Magnesium pills- Again both related to migraines and FMS, as necessary.  And I don't tend to add too much into the mix, with herbs and such, since it conflicts with medications.  A little at a time works well enough.

3) Continue with my Wii fitness plan, which is a little every couple of days and then add to it as it becomes routine.  A tricky thing, since if I overdo it, that FMS pain can really kick it up a notch and also, I do not exercise when I have an acute migraine (I don't want to blow a blood vessal or something).

That's all I got.  It is enough.  Got to have a solid foundation to build on after all.  Maybe as I progress and get some confidence back I will have the energy to explore possibilities.  At the very least I can take some comfort in establishing some routines.

Walking backwards

What I like about working is that I have a purpose, which makes me feel like I am at least accomplishing something.  I also like the distraction, it is easier not to focus on existing pain or think about future pain when you are forced to play all nice with others.  I am a good faker that is for sure, but when it comes to honestly discussing how disturbed I am about chronic pain it is extremly difficult not to break down.  Mostly because I figure no matter what I do it absolutely changes nothing, which is rather unpleasant.  In that case, it seems there is no alternative to consider, just figuring out how to suffer silently, while at the same time not, apparently, wanting to jump off a cliff.  Which frankly, is rather asking a lot.  I can play the 'what if' game all I want, but when push comes to shove I need to have an income.  Even if I speculate on ways to do that which will reduce my pain, I still have to do so while actually holding on to the career I have currently, somehow.  That, in itself, is not a bad thing, because as I said working has its using.  I don't feel like I am wasting away, becoming mentally sluggish, by staying at home.  So good and bad. 

Obviously bad because I have no idea if I can maintain it or should.  What I absolutely loath about work is simply that it spikes up the pain by placing me in a situation for eight hours that constantly grates on my brain, which then causes the migraine to be more severe for longer.  Working the graduated return to work thing meant one day on one day off, which is finished as of tommorow... and that worked because the increase severity of the migraine I endured could then be kicked the next day.  When I return to full time that is no longer the case.  Then it is a compounding pain issue.  It is disturbing enough to realize how much more severe the pain is when working, but then to remember how much worse it will get?  Not a pleasant thought any way you look at it, but when I am not all that emotionally stable right now, it is a damned scary thought.

  There are potential options.  One keep on working anyway and see what happens.  Or try for the long term leave again, and see if it is possible to find a way to cope.  I am not sure it matters either way, in the sense that good or bad choices, strong emotions or numbness, working or not working... nothing I do makes a bit of difference in how things work out.  Such that, sure I can apply for long term leave, decide it is the right thing to do even with the wage cut, but that is assuming it would be approved, which is definately no gaurentee.  When it comes to demonstrating, even in the most extreme ways possible, that chronic pain is in fact a disability and needs to be treated with all the due care, other people simply fail to see it that way, the people who ought to be considering my welfare anyway.  Which makes me thing that either the long term will be outright declined or that I will go on it for a few months and it will be cut... and I will be exactly where I am now, faced with working fulltime or not at all, when I am not ready to.  I know for a fact my mother would say to try anyway, so at least she is on my side, and certainly people reading this blog are generally on my side as they are going through the same thing.  Enough to make me not feel so isolated.  Not enough for me to feel like I will be accomplishing anything but delaying the inevitable.  A part of me thinks if I throw myself back into work maybe this time the satisfaction of working will outweight the continous pain.  Another part of me thinks that is pretty delusional considering if I could not do it when I was at least coping on an emotional level then how could I possibly think I could do it now, when the best emotional state I seem to be able to endure work is by numbness?

I mean the futility of my recent experiences it damned disheartening really.  The fact that I could be in a place where I really wanted to kill myself and that absolutely changed nothing, is in itself damned depressing.  Such that when I was told I was ok'd to return I really thought about it again.  Then decided I really should not punish my family by doing so, since one sucessful suicide would have been hard enough on them without having me keep attempting it.  Since I promised not to, I figured I might as well hold to that promise as long as possible.  Which then made me wish I had damn well done it properly to begin with.  Then I just went numb for a few days, since not feeling anything was easier than breaking down about something I obviously had no control over.  Makes a person feel downright powerless.  So all those postive things I was told to do that 'might make me feel better' are rather worthless.  In the sense that, while I should quit smoking, I don't see how that works for me... it would be rather counter-productive to do anything that would increase my potential lifespan.  Other people may think suicide is irrational, but it is not really.  It is deperate certainly.  That should say I need help with pain management, but apparently it does not translate that way at all.  I would really like to see those people live with my brain for a decade, having tried all that I tried, and see how spunky then feel. Maybe it is not a reasonable option, but neither is choosing to live fifty more years as is.  So an unhealthy habit like smoking, might at least decrease the fifty odd years I am expected to endure.  Which basically put me in a mindset that I had before the 'suicide incident' such that I felt I could do as I please, because it made no difference anyway.  At least when it comes to smoking.  I am trying to keep up with some minimal exercise and I am off the caffiene, but I simply feel no need to quit smoking.  If suicide is the plan B for when everything else has failed, and plan B did not work, then I am only left with a lame plan C, which is at least keep smoking and at least if plan A (which is doing everything else, try anything, suffer along like a good girl) does not pan out, I have at least the hope that I will have a nice spontenous heart attack to do me in.  How utterly irrational and sad is that thinking?  I rather liked having that plan B in the background, because I thought I would never actually use it.  It was simply nice to think that I had to the option.  And now plan B is too tempting to ponder for long.  But plan A totally sucks.  Maybe I should concoct an equally irrational plan D, and say I simply have to survive until robotics is advanced enough to transplant my mind into a robot body.  Find hope wherever you can.

Something interesting from the Migraine Foundation

Well, look at that... some research into why chronic migraines are chronic!
Chronic migraine is a prevalent healthcare burden whose cause is only partly known, a void that hampers development of new treatments. Considerable research shows that chronic pain, including that from migraine, may alter pain pathways so that they are more sensitive. This effect involves cytokines, small molecules first recognized for their role in signaling between immune cells. We hypothesized that pro-inflammatory cytokines produced after migraine could make it easier to trigger subsequent migraines as modeled by spreading depression, a most likely cause of migraine pain and aura.

We confirmed this hypothesis by triggering spreading depression in hippocampal slice cultures, thin sections of brain that can be kept in a dish for months. We found that spreading depression triggered cytokine changes in the brain that both increased and decreased susceptibility to spreading depression on subsequent days. Importantly, we also identified cytokine changes from neurons that prevented this increased susceptibility to spreading depression. Our work is the first to show that the interplay of cytokine changes between microglia and neurons may be ideal targets for the development of novel therapeutics to prevent migraine and its transformation to chronic migraine Migraine research foundation
Well, look at that... some research on why chronic migraines are chronic!

Wii Fit

I got the Wii fit for Christmas, which some might narrow their eyes and say 'are you implying I'm fat?', but in my case, I have wanted one for awhile!  Although according to the first start up mode my BMI is 27, which is, er... plump (healthy is 22, and over 25 I think is overweight).  I also have no sense of balance, because my muscles are weak and I am extremely double jointed.  Which is why I wanted this, because the Wii fit has yoga on it.  Since the only form of exercise I apparently can do without boatloads of pain is stretching I figure yoga is a good start.  It goes through each move slowly and then you can make up our own routines from the moves.  Kinda cool.  Then it has exersizes to help with balance that are little fun games, as well as games for aerobic exercise and strength building ones.  Obviously I am avoiding the strength building because those are far more painful than my FMS muscles can handle.  That being said, yoga also painful.  Since you have to hold positions, well my muscles tremble and then hurt shortly after.  So it is in fact a work out, and I am feeling it today, but it is a work out that I can tolerate.  I like the Wii (and now the X-box kinect is out) that really do engage the person and promote non-couch potato activities that at least make us more mobile and promote more activity than a sedatary lifestyle does... but for those of us that are health challenged, well, we cannot really throw ourselves into any exercise workout anyway, not without suffering major consequences.  Nor can we always leave the home to engage in activities, nor find activities geared towards people with chronic pain.  Since pain is not fun, having these forms of exercise available that we can cater to our limitations and also be in an entertaining presentation, it is appealing.  I was not certain I would be able to take a yoga class for instance, since some moves are impossible for me... I can't put any weight on my wrists due to FMS and doing so would mean wrist pain would hinder my abiltity to write or anything else for weeks or even months, and then there is the fact I might not be able to attend every class to begin with.  So this is a fine compramise.

Hemicrania Continua

Someone had mentioned this headache disorder to me because I get chronic migraines.  And they are in fact very similar in some aspects, but Hemicrania Continua is not responsive to triptans, which migraines are, usually, sometimes.  Although it does make me wonder, since I wonder sometimes why migraines become chronic and maybe it is because it is migraines plus another headache condition which would explain the difficulties in treating it.  Anyway, I'd thought I'd share this tidbit.

According to Health Central's fabulous Terri Roberts "Hemicrania continua is considered a primary headache disorder, meaning that it's not caused by another condition. It's a rare but treatable disorder. According to the International Headache Society's (IHS) International Classification of Headache Disorders, 2nd Edition, hemicrania continua is a "persistent strictly unilateral headache responsive to indomethacin."

The IHS diagnostic criteria for hemicrania continua is:
Headache for more than 3 months fulfilling criteria B–D

All of the following characteristics:
unilateral (one-sided_ pain without side-shift
daily and continuous, without pain-free periods
moderate intensity, but with exacerbations of severe pain
At least one of the following autonomic features occurs during exacerbations and ipsilateral to the side of pain:
conjunctival injection (forcing of a fluid into the conjuctiva, the mucous membrane that lines the eyelids) and/or lacrimation (tearing)
nasal congestion and/or rhinorrhoea (runny nose)
ptosis (drooping eyelid) and/or miosis (abnormal contraction of the pupils)
Complete response to therapeutic doses of indomethacin. Not attributed to another disorder " Health Central

And it can occur with other headache disorders:

However, along with the daily, one-sided headache, it also causes exacerbations of more severe headache, which occurs on the same side as the daily headache and is characteristic of Migraine pain. These more severe episodes can last from 45 minutes to days. During these exacerbations, symptoms of other disorders may be present:

Migraine symptoms:
throbbing pain
nausea and/or vomiting
phonophobia (increased sensitivity to sound)
photophobia (increased sensitivity to light)

Cluster headache symptoms:
conjunctival injection and/or lacrimation
nasal congestion and/or rhinorrhoea
ptosis and/or miosis

yay me... my right eye decided to go funky along with the right ear

So I still cannot hear on the right side, excluding the insanely loud ringing that is driving me crazy.  Today, just for fun, my brain decided to muck up the right eye.  It is like having a cataract, it is all hazy and makes everything looked doubled, which is so much fun.  The visual snow aura is also stronger than it usually is, in that usually it is just pin-prick white sparkles and now it is pin-prick white, black and blue sparkles with the occasionally larger black or while blob.  And of course the migraine pain itself is still there. 

My first day back at work was alright.  It was a half day, so that is not too bad and I am not taking customers yet, so also not too bad.  However, I do have this status migraine joyness to deal with and just stepping outside made that worse.  At least I have been able to keep a grip on my emotions... going for an all out numbness, which works since I have to hide the pain somehow and still be able to talk to co-workers about how I am doing coming of the leave without spontaneously erupting into tears.  Not sure how long that is going to last since really I am not handling the whole mask my pain so well these days.  I tend to avoid eye contact when someone asks me about how I am doing, maybe because it easier to lie that way.

I don't get this deaf thing

I have had a migraine since Thursday and on Friday I lost the hearing on the right side.  Lost hearing for external sounds completely but there is a very loud ringing noise.  I get how a migraine can knock out my hearing like a broken speaker that flickers on and off, but this whole complete deafness thing is damned irritating. What's worse is that the left side is not all that great either, since some noises are extremely painful.  I wonder if one of these times my hearing won't come back, since it seems to take a damn long time to come back on line.  Damned status migraines... the longer they are the weirder they get.

Tomorrow I go to work

And I think I am still in shock.  Shocked that my neuro cleared me to return.  I said I was terrified of returning, knowing I completely destroyed my emotional calm in trying to hide my suffering.  Just thinking about working in that pain brings tears to my eyes, so how am I going to pretend tomorrow that it is not killing me?  I thought I had made myself clear, but with these doctors it is like those sleep paralysis dreams I get... you can be screaming and screaming and no one hears you, you can run but you never get anywhere and there is no escape.  I still can't believe they did not listen to me.  It is like what I say, believe and feel is of no consequence.  Even though it will be a slow start for two weeks before I go to full time I know the torture that awaits me and, damn it, I can't manage to shove the emotions down far enough to handle the thought of that pain.  It is a slow torture knowing that no matter what you do or say you end up where you were.  I don't know why I thought I had choices and that I would be given the time to heal and make those choices. Maybe the problem with an invisible disability is not that people cannot see your illness and pain, it is that those that are supposed to help you survive it are completely indifferent.  Lovely how they manage to kick you when your down.  I feel just horrible, so horrible I can't even talk about it or I will totally lose it.  That is why the facade is vital... I can't function when I am honest about my suffering, it like a damn breaking... the only choice to survive what you have to do is to pretend it is not affecting you like it is and I seem to have lost the ability to do that when I crossed that line from wishing to die and acting on that desire.  Well, I only have to pretend for four hours tomorrow, surely I can pull that off.  Lie, lie, lie until you believe the lie.

Managing Migraine Misery Q&A

Check out the full Managing Migraine Misery: Merle Diamond, MD transcript

Diamond: Chronic migraine or chronic daily headaches is a very common problem seen in a neurologist's or headache specialist's office. There are many treatments available, some of which include drugs and some of which are behavioral. Some simple things to address include caffeine consumption, over-the-counter medications, decongestants, and prescription pain medicine. These can all lead to rebounds. Having a healthcare provider who is interested in managing your treatment over a long period of time is important. The National Headache Foundation may be able to give you appropriate resources in your area.

Member: I recently had a migraine that lasted over 10 days (no medication helped. I took Excedrin on top of Amerge and Tylenol with codeine) and ended up going to the ER for relief and a CT scan (normal results). I don't get migraines often, but when I do, they have lasted up to two weeks. Why?

Diamond: We know that patients with more severe, harder to treat headaches, migraine specifically, get something called central sensitization. That means that the whole brain has become involved in the migraine process. These headaches are harder to break or stop and can last for days at a time. It is important for your doctor to plan an effective intervention to turn off your headaches as quickly as possible. There are many ways to approach this but there are other options to use to prevent this from happening. Sometimes adding a preventative medication may be helpful as well.

Oh, yeah, I get migraines like that all the time. But then I get migraines all the time. And am on 3 preventatives right now. Certainly the ER here does not care one wit whether you have a migraine for three days or one hour, they treat it the same damn way.

Member: I have been a migraine patient all of my life. My concern is for my children. Are they hereditary? Also, I recently read that a child that gets car sick usually develops migraine headaches later in life. Do you have any knowledge of that statement? Thanks for your help!

Diamond: Motion sickness is probably an early migraine forerunner. Migraine is a genetic disorder and if you have one parent with it, you have a 50% likelihood of getting it. If both of your parents have it, you have an 80% chance of getting it. In saying that, migraine in a family will vary so that one person may have very severe attacks and other patients within the same family may not have as severe or as many attacks.
Huh... that explains that bad motion sickness I used to get as a kid, and still do really.

Its like deja vu all over again

I don't know why I think I can trust my doctors to know what is going on with me when obviously I can't. Every time I have taken a short term leave of absence I have ended up returning to work before I should have, because I am left with no choice but to do so. I have to follow what they put on the forms they send in. And once again I am screwed because the neuro said I was able to return to work this Monday, which I have just been informed of via a message from my short term case manager. Even though I am on two new medications and who knows if they will work long term. Even though one of them makes me so fuzzy headed I can't think straight and sure can't get up at a decent time. I suppose my mental health has no bearing on the situation, although the thought of returning to work right now terrifies me. And rightly so, when I know exactly what it is like to work in all that pain, be expected to do so, and damn well know the price it has on me over the long term. I wonder if I can trick myself into believing this is okay.

Got a case of the dead head

This new med is making my brain ball all fuzzy.  The good thing is that I slept like the dead last night... for twelve hours.  And I woke up with no migraine at all.  One migraine free day!  Awesome.  Except I did get a migraine in the evening, but still, a good sleep really helps prevent early morning migraines and the fact it was delayed until the evening is in fact awesome.  The fact my head feels like it is stuffed with cotton balls not so awesome.  This preventative is an antidepressant used to help people sleep, which was the intention given I have such sleep related migraine issues.  But antidepressants always depress my brain functions as well.  If I recall correctly this med is the one that dulled my brain when I was taking my Masters, which did not work out so well for one of my term papers.  At the time it really pissed me off that the neuro I had gave me something that directly affected my ability to function at school, plus all on its own it did nothing for the migraines.  I did not like living in zombie land and went on to the next preventative.  But now, who cares if I dwell in zombie land for a bit?  If it helps, it helps.

Almost finished migraine week I think

Almost through this months week of crazy bad migraines.  Maybe.  Last night was brutal and today is the same, but still, I think it is nearing the end.  I am also nearing the end of my short term disability, as I got the paperwork to go ahead with the long term today.  And getting on long term is a whole different story, a lot more paperwork and less of a chance of success.  Unfortunately, nothing has changed since I went on disability, so if I cannot get the long term then I am screwed long term.  I loath insurance paperwork.  Also means off to the doctor I go again so he can fill them out, hopefully, fill them out well, since the last time I attempted long term that doc simply could not be bothered.

I had a dream last night that I was in prison for robbing a bank.  And they would not give me my medications.  So it was very painful and likely influenced by the migraine I had when I went to sleep... still if I can't get on long term, prison is an option. LOL

Yet another drug to add to the cocktail

My neuro has added another medication to the ever growing list.  So now my preventatives are Lyrica, Verapamil ( A calcium channel blocker), and now Amitriptyline (An antidepressant).  Not that Amitriptyline is new to me... way back in the day it was one of my first non-effective preventatives.  He wants to try it with the others and maybe it will help me sleep some as well.

I have to wonder why some people have chronic migraines rather than occassional ones.  There are more of us out there than one might think.  People are always asking me if doctors know why I get so many migraines.  And how should they or I know?  Not caffiene though, that I can say for sure.  Might be genetics, combined with sleep deprivation, combined with FMS and its photosensativity issues.  Yet, then others with chronic migraines would have other underlying conditions and I am not sure that is the case at all, although it might be in some.  So I do wonder why I am afflicted with so very many migraines such that having a migraine is more normal than not.  Makes me wonder if the whole world is a dang migraine trigger for me.  or like my brain is constantly surging with little mini seizures.  It is strange that a neuro would not have a theory why some people get these chronically.

No matter the cause, if there is one specific cause, the fact remains chronic migraines are difficult to treat.  You try one medication and it is really hard to say if it is doing anything when the migraines are still chronic.  Sometimes I think they are slightly less than usual or slightly less intense, but no dramatic difference at all.  I wonder if there ever will be.  If a med is considered to be effective at a 50% reduction of migraines, then in the end I am still left with chronic migraines.

So we try all these prevenatives and if one seems to have some sort of positive effect we keep it and add to it.  Now I have three.  And I wonder if my brain even remembers what its normal non-drugged up state is.  And I wonder if it would be a good idea to stop all medications, see how things really are and then add them back in slowly to see if there is any real difference.  I do vaguely remember what it was like without a preventative med... it was a lot more throwing up and a lot more sudden blinding auras... so some preventatives seem to help with some of the symptoms of the migraines... just not that pesky pain symptom.  or that could just be the migraine pattern shifting since in replacement of those symptoms I now get a lot more ringing in the ears, hearing loss and permanent visual snow auras, balance problems, virtigo and Alice in Wonderland Syndrome.

So I am still left with wondering why they are chronic and why all these meds that are supposed to work simply do not.  If migraines are caused by excited neural activity then why can't they just dope me up with something that severely dampens that activity?  Sure, I would be dumb as dirt, but there would also be no pain.

Insomnia Insanity

Pain eventually drives us all to distraction, fustration and desperation.  How can it not?  When it is so intense all you can think about is how to stop it?  Yet, with a good nights sleep, we can at least think rationally again.  Which is why my insomnia is a rather bad element to add to the mix.  Thankfully, when I am so inflicted with sleeplessness I do not worry and I do not dwell on negative thoughts.  Usually I day dream or think about ineresting philosophical ideas... and sometimes I lull myself to sleep doing so.  With a nasty migraine in the mix, my aching, throbbing brain simply does not allow me to sleep.  Even when I distract myself with thoughts I cannot get comfortable.  I am restless and toss and turn.  I get up for a bit sometimes and try again.  Usually I will fall asleep somewhere between 3 to 5 am.  Last night I got all the way to 6 am and knew it was a lost cause.  So I am up, did some laundry and cleaning and now blogging and writing.  Hoping to tire myself out a bit so I can have a little nap, but not a deep sleep, in the hopes that tonight I will be able to sleep.  I do remember that when I was working, with that status migraine, unable to sleep and unable to call in sick it literally twisted my thinking and emotional state.  I need sleep to at least have that short span of time to recover, gather my strength and will power, in order to attempt the next day.  Without sleep there is just compounding emotions, fustration and then desperation.

You'd think sleeping pills would help.  And the Zopiclone actually did, in the sense I got about five hours a night in... but even more than that, while it was kicking in, it did not make me insanely tired or dopey, but it did dim the migraine throbbing pain, which then enabled me to actually get to sleep and then the pill aided in keeping me alseep for the most part.  This new sleeping pill, which is puported to be uber strong, narcotic strength and addictive... totally sucks.  It does not make me sleepy, it does not dim the migraine and as a result I do not get any sleep on it.  As I have proven last night and many times before that.  If I fall asleep it does help me stay asleep and then over sleep, but certainly it is not helping me maintain a decent sleep cycle, which is what I really need when I am afflicted with the worst of the worst of my migraines, the dreaded two weeks of hell from hormonal nonstop migraines.  So, yeah, a little sleep would sure be welcome.

Thinking about the whole not working thing... again

I find it weird, in this economic climate, that people would find it odd that I am concerned about work stability. I get that I don't have it now, but I had valid reasons for trying to maintain it. The thing is, upon reflection, and then some more reflection, I realize how futile it all was. Yes, financial stability makes me feel so much better. No one likes to worry about bills. And I sure don't like the decrease in my funds with this short term leave, or the fact I have to wait and depend on doctors form filling skills to know if I will continue to have funds at all. And you never know what is going to happen in life, any change of circumstances can throw you throw a loop, and it is a good thing to know you have a career that is stable. So of course, no matter how poor our health we try to hold onto that, knowing because of our poor health we are at a higher risk of being disposed of and laid off.

So the thing that is constant is the chronic illness and chronic pain. That gets worse or better, but never goes away. So yes, when I was unable to go into work I felt horrible about it. And yes, when I missed more than my share I felt like I was failing my boss, my co-workers, myself and my family... and that was in fact confirmed by my employer, as she said the said thing, verifying all that guilt I had. We all have to deal with that guilt that we cannot be all that we think or believe we should be. Not unrealistic desires in themselves... simply unrealistic in our current state of health. We do have to accept our limitations and let go of that guilt, but it sure ain't easy.

So beyond the guilt and the desire to maintain financial stability, I got to thinking about the price of success. The days I was unable to go into work were more than any other employee, but given the amount of migraines, acute, status migraines, it is freakin amazing. Big deal for me, not so impressive to those outside of my brain. Let's say I did not miss any days at all and was a model employee that coughed on people and threw up on shoes once in awhile. That would be great for everyone outside of my brain. I would have financial stability. I would not have to deal with pesky guilt issues. Sounds like a good idea... simply go into work no matter what. Which, hey, could be really fun with Alice in Wonderland Syndrome. Work would literally be like a funhouse, where I bounce off the walls, think I can touch the ceiling, ask people if they also see that plant shifting and growing and shrinking. Joyness for everyone. Who needs shrooms? Point is, those days I miss are the days when I am frantic from the pain, desperate from the pain... or those days when I simply could not move because of the pain. Let's say for the sake of argument that I suddenly develop an even more impressive pain tolerance, or that is, the ability to mask my pain from others. Then it comes to is it worth it? All those pills to take for preventatives, that do not work so well, and all those things to take when the migraine hits, that also do not work so well, when the triggers are all around you while you are working. All the migraines that cannot be treated, all the ones unsuccessfully treated. Honestly, succeeding is its own kind of hell, but a hell that is way more internal (since no one notices so much when you manage to be present and in pain) and way more horrific, because you know the battle will just continue the next day. So even winning you are losing. Success in work also means no other aspects of your lifestyle have a chance of prospering, because there is simply no energy left for anything nonessential. So when I thought about it failing, and having to go on leave, I feel better (emotionally, mentally, physically... but not financially) and succeeding, is a horrific hellish non-ending battle that cannot be survived for long. Like I always thought... if I just keep going to work, keep pushing through, it will be all right because soon something will come along to make it so this pain is not so constant... only something never did. We are designed for long term acute pain survival without mental and emotional distress. Unless we are robots. Damn those lucky robots without a nervous system. I am a little afraid to return to work, okay a lot afraid, because I know what happens. I already know the price of success and it is too high a price to pay. Impossible to maintain.

So all that guilt and self-loathing for those days I failed to beat, or fight the pain, were absurd. Failing was what let me endure so long. Failing gave me that brief moments of peace to suffer without an audience, suffer without upholding a facade, suffer without having to do a damn thing. Yet I felt so bad about it and it was the succeeding that was slowly killing me. In fact, when it came to knowing if I missed one more day I would be fired, laid off or demoted, that I promised to come in every single day no matter what until my next neuro appointment... well that appointment was bumped, and I got a brutal status migraine, and I could not escape the fact that I could not succeed and tried to just put an end to it all. So without the possibility of failing once in a while, I could not endure. Silly to worry about failing to win the battle against pain, when succeeding is actually so much harder, so much worse, so much more damaging and just plain horrific.

What does not kill you does not make you stronger. Quite the opposite. I felt strong to go to work every day. I felt useful and productive, despite my health, ignoring my disability. Foolish to ignore the price of pain. It was not about the days I could not come to work, not about the sick days or the leaves of absence… to employers it is, to me it was… but those are merely a reflection of the overall illness and battle. They are necessary. Not to be avoided. Not unless you want to be cornered, trapped and desperate. Not about that at all. It is about the price of success. It is about the toll of chronic pain in daily life. I am simply in too much pain to maintain a full time job. Period. It becomes obvious when I am not working, because I am still in pain (without all the nasty aggravators, stressors and triggers) but still a wackload of pain. Emotionally though the pain is more bearable when I know I do not Need to do anything when I am suffering. Emotionally stability is necessary to surviving chronic pain. It should never be overlooked. Working may provide financial stability, but constantly needing to endure that pain kills.

Comforting Clutter

There is something a little scary in hoarders who become emotionally attached to their things such that they cannot function in the world.  And there is something admirable in people who can discard half or more of their things, to declutter their lives, and feel such relief from it.  I, on the other hand, am somewhere inbetween. 

I don't really care about the TV, the DVD player, the video game systems and whatnot.  I could be rid of all those in a minute, although my man might have a fit if I did.  When we first moved into our own house about three years ago, we did not have enough stuff to fill it, so we went forth and began the process of filling it.  To me it is about making a house a home.  I like to be surrounded by things that either make me feel good when I look at them, are aesthetically pleasing, or have a memory I like to remember encoded within them.

One thing I have noticed is that I do not like bare walls.  I like my walls filled with pictures that appeal to me, sooth me, or pictures that remind me of places I have been.  Ansel Adams was a black and white photographer that did many nature pics, that I love.  While the pictures of places I have been and family anchor me to the memories, because my ability to recall the past is hazy at best.  Pain fixes me in the present and it is difficult to remember all those good times, so pictures encode those memories and bring them to life for me.

If I was ever tempted to be a hoarder it would be with books.  I have one room literally stuffed with them.  I like knowing that right at my fingertips I have worlds available to me, stories I remembered fondly and can escape into again and again.  I do weed them out and donate boxes worth every year.  Those that I will never read again.

Then there are the nicknacks.  The things I bought other places in other times that I again find aesthetically pleasing or envoke a memory.

Yeah, clutter can be good.

Migraines and my IQ

Not a surprising statement when you consider the symptoms of a migraine; pain, mental fog and so forth. I just did one of those standard IQ tests and got a 131, which is slightly lower than my usual which is anywhere from 135 to 140 depending on the test and my desire to focus on it, but my original one was 140. I have a moderate migraine right now, and the last time I took a test with a migraine it was around the same. Obviously, if I did one with an acute migraine, it would be around 80, but who would want to torment themselves like that? Gods, a verbal test would even be worse.

I was curious to know what sort of change there would be to my IQ in general... from the lack of focus, to the inability to access long term memory.   According to a radio show 132 is a genius, but I am pretty sure most scales consider the 140's to be that. Because really, if you consider 100 to be average, mid range for average anyway, 30 above that is not all that dramatic. Getting into the 160's, now that is impressive. Some scales suggest that 125-134 is gifted and is associated with the level of university graduates, so not suprising in my case. The next above would be highly gifted, at 135-144 which be the level of 'intellectuals'. Above 200 would be unmeasurable genius, which is really too high to be sane.

According to this test I completed, 145 is a genius, 130 is gifted, 115 is superior and 90 is average. First of all I would like to know how the average went from 100 to 90... and is that a bad sign? I know there is a range to normal, 85-115, but still I though average was based on 100. My range seems to be the same no matter what. I mean there are different scores, with different bias tests, but the range is generally the same. Aside from migraine and FMS fog of course.  It seems to stick between 130-140.
But I can tell you that IQ has little difference to make in your success in life.  Because of course it is a limited test... considering only particular facets of our intelligence. The more intelligent you are the harder it will be to find your niche in life and the less satisfaction you will get from many things. Plus it has little to say about your ability to function. My brother says the more intelligent a person is the more crazy they are, and he may very well be right about that. It certainly seems to me when you think about all the people with exceptional IQs they are a utter loons, socially inept or extremely exccentric. Not that that is a bad thing, mind you. You know my theory; everyone needs a little crazy to stay sane.

Take these following estimations... estimated by smart peoples...
Rene Descartes was estimated to have an IQ of 180, and I am sure that is surprising to many. When you consider his logic. :)
Kant is estimated at 175, and really I would have thought it higher due to his inability to constuct a sentence that makes sense. Most annoying philospher of the year award goes to him.
Hitler makes it to 140 and perhaps we can say his twisted logic outweighed his common sense and compassion. Perhaps a reason why intelligent people do not rule the world, but what a perfect place, for them (his was a crazy scary place, but his version of utopia I guess), they would try and make it be... if they could ever get over the thinking phase of the plan that is.
Einstein is at 160, and that is not too surprising really.
Bill Gates is also at 160, which actually is surprising. Given his field and accomplishments, not because of his business sense or wealth of course.
David Hume was at 180, and really for such a smarty pants I would have expected his work to be more spectacular, or at least more wild thoughts.
George berkely is at 190, and that is bordering on crazy smart, a little more crazy than smart on his part. If I leave the room you all cease to exits... ha ha... hee hee... refute that!
Da Vinci is estimated at 220, need I say more?
Plato is estimated at 170, and packed full of crazy.

So smart or crazy? Is there a difference. Not really. Semantics. :)

So sure migraines affect our tesing scores.  I was terrified when I took some classes for work it would affect my ability to test, if I had a migraine at that time, since all that knowledge is hard to come to the surface at your beck and call, not to mention typo hell and useing the wrong words, and the wrong tense.  Then there is that migraine fog, where it is like thinking through a brain of pudding... hard to be critical and rational when you can even read a sentence and have it make sense.  Fortunately, I seem to still test well.  Usually.  I don't interview well though. 
The perks for migraines and thinking are those manic migraines, as I call them, where you think a bazillion thoughts a minute, inspirations hit left right and center and ideas just come to you.  I love this time and not only can I work like a demon on crack, but it is my most creative time.  Full of creativity, in many forms.
Then I think of that study that shows we have less cognative decline as we age and I think, so I am dumber than dirt sometimes... when I am 90 I will be sharp as a tack.

Just not feeling good about it

Stopped by work today to fax off some more short term leave docs to my neuro and had a chat with my boss.  Just sitting there talking to her reminded me that I am not doing well.  I think I am when I am at home, when I am managing my pain.  But, no, I am not.  Within two seconds of that conversation I felt that Guilt for not working.  When she asked how I was doing I had no idea how to reply, since just thinking about work makes me feel anxious and decidedly not well.  I think about what I went through and, hell no, I don't want to endure all that again, because I damn well know it will put me in the same frame of mind I was before. I had no idea how to answer when I might return.  Some of my family thinks never is a good idea all things considered.  My shrink thinks I need to be on long term and then can decide my options, but believes that returning to that work environment might not be a good idea.  My doctor is quite indifferent.  My neuro also thinks I need to be on long term.  Really, it is not up to me, since my choices are always not what is best for me but what I think I should do.  If I return, and I return too early, such as before I even know if certain medications are effective, then I am screwed... because I know that I will keep on going, despite the pain, despite the stress and frustrations and emotional turmoil... because that is what I always do. I try to cope as best I can even when I can't... then I pretend I am, until I can't pretend any more.  Which obviously has not worked out so well for me.  So the idea is to have a substantial medical change so that when I return I can cope, which I don't even know is possible yet.  My boss does not want me to return until I am 100% better, which is impossible, but what she means is emotional stable and to a point where the pain is manageable.  Yeah, so mentally and emotionally still not quite recovered since I still feel that horrific guilt about what I think I should be doing rather than what I am currently capable of doing, I am still anxious and damn terrified at the idea of going back to work, just deeply afraid of how I will respond to all that stress while enduring all those migraines.  I know it is not possible for me to work full time and not miss a day when I have as many migraines as I do, but particularly have a week and a half status migraine every month.  I have lost my confidence to cope in that situation and you need to believe you can in order to survive it, which right now, I really don't.  And really, I have not quite come to terms that I have other options available to me, since financial stability is a concern.

Rather ruined my mood really.

Christmas is just around the corner

I love Christmas.  I don't like the hype and I get totally annoyed with all the Christmas music on the radio, but I love the holiday.  I love gifts and I love giving gifts... even if this year I had to cut my budget quite a bit.  I like the meal and the gathering of family.  It's all good in my books.

I bought 90% of my gifts online again this year.  It is just such a hassle otherwise.  And to the left you can see while doing so I went and designed a few things for my 'Hermit shop Cafepress'... because that site is awesome, not just for creating something for yourself, or selling designs and what not... but simply the availability of some pretty cool gifts.  I personally like the photography, illustrations and artwork framed prints.... because I like that sort of thing anyway and can't beat the price.  I am also absurdly fond of having and buying for others humorous t-shirts... I just can't seem to stop myself!  Then I usually hit Amazon for random things like books or music.  Best buy for video games.  Now I just hope eveything arrives on time, because sometimes I don't time these things well... amazon for example might be sending something from across the border which takes insanely long these days.  Or with best buy it might not be in stock right of the bat if it is popular.  That is why I went mostly with Cafepress this time around, because I was late off the get go.  There is another good one I used last year that has loads of overstock items but I seem to have forgotten it.  And Ebay is always an option, but if I ever shopped on there I would have to make sure I had plenty of time, since who knows where someone is shipping from?

I totally like the low stress shopping.  You have to watch about using your credit card... going to good sites for one, but for the best security is using a Paypal account, since it is an option most sites have and is a secure online bank really.

I am feeling edgy after one heck of a migraine

I was completely knocked down for the count today with an intensely acute migraine.  It started of manageable and I puttered around the house trying to be useful, then it just slammed into full gear.  And with this baby it was extremely painful in the temples, which is something I got after my botox treatment as well, new pathway for pain I guess.  Also got those electric shooting pain with movement.  Then I literally felt my brain slow down into utter bimbo mode as I frantically tried to get rid of the beast.  Between a tramacet and my abortive, Maxalt, it was killed, mostly.  Unfortunately, the dang abortive gave me chest pains again, not insanely back angina pain though, just those sharp twinges of pain that hitch your breathing and make you wonder about cardiovascular complications.  It sure was a whopper.  I am left with an ache in my head and some nasty shoulder and neck pain.  No discernable trigger for this one, but there is not always something I can point to, or blame... it just is what it is.

Ah the power of Google and Doubt

I am sure many people with Fibromyalgia wonder is it really Fibromyalgia or something more sinister.  I was thinking about the whole rash and bruising issue and so used the power of Google to help me out.  One thing for certain... not eczema... stupid ER doc.  It is in fact petechiae (little red dots) that when I itch or rub turn into thousands of petechiae which since it is blood pooling upward do then spread into some impressive bruises that take their time in leaving.  The cause for the petechiae?  A whole lot of not fun.  One thing that can cause it is medication... but I have not been on any medication as long as I have had this phenomena.  One thing that leaps out is that it could be a symptom of Lupus, which way back when I was a kid with mysterious bruising one doc thought I had, that combined with my impressively fluctuating and high ANA count.  Yet nothing could be determined at the time and like a decade later, after me complaining about the same dang things to different doctors, they clued in it was FMS.  But this whole petechiae and bruising issue is not a FMS thing, although FMS does come with its fun skin complaints, but this is more a bleeding or autoimmune thing.  Or maybe some weird allergy or anemia.  I hate when things do not fit under the right umbrella because frankly this is not the sort of thing I want to bring to my doctor to puzzle over and waffle over a different diagnosis... but if I do go see him about it, maybe on my regular med refill visit, I will make sure to scratch the hell out of my arm and show him the thousands of little red dots that magically appear.  Anyway, it is damned annoying is what it is.  Having a condition like Fibromyalgia is a pain as it is, with its hundreds of annoying symptoms and nonexistent treatments.  Like I need another issue or health concern to add to it all.  The thing about Lupus is that it is so similar in symptoms to FMS, and has the same comorbid conditions I have included into it, such that, yeah, it fits, but to prove it is another matter altogether. 

The mesage here is don't Google these things.  Just not a good idea.  Make you all hypocondriac like.  Yeah, it seems like if you get these petechiae and bleeding or bruising it should be looked at... but it has been looked at, more than once.  Once I was just itching a itch and got a streak of those dots and then out of curiousity itched a different area and got more... eventually thinking maybe I was having an allergic reaction when to the doc, who concured and gave me a shot of benydryl.  Then the next time same sort of thing and was told it was eczema even though it is never on the hands, elbows or feet.  The next time a doc said it was like an allergic reaction, but not really, more like an allergy sensativity to a multitude of things.  Well, that is just plain not helpful and did any of them look to validate their opinion with like an allergy test or a skin specialists... thats a big hell no.  So I figgered not important... just don't scratch any itch, even through clothing.  That makes me rather not inclined to bring it up once again, since my docs are more concerned over my migraines and my lack of coping with them, which is rather something I want them to focus on.

Darvon taken off the US market darvon FDA  suggests Darvon and Darvocet be taken off the market in the US.  Not sure about Canada.  I remember being on that one myself back in the day.  Either way looks like studies say it is bad for the ticker.
"The U.S. Food and Drug Administration said Friday that Xanodyne Pharmaceuticals has agreed to halt marketing of Darvon and the related brand Darvocet, which have been subject to safety concerns for decades.
The FDA has also called on generic drugmakers to stop marketing low-cost drugs containing the active ingredient in Darvon, called propoxyphene.
About 10 million people in the U.S. received prescriptions for Darvon and related drugs in 2009, according to the FDA.
Friday's action puts the U.S. in line with Britain and the European Union, which previously decided to ban Darvon because of suicides and accidental overdoses. The drug is listed as an approved medication in Health Canada's online database.
FDA officials said they decided to take action based on a recent study showing Darvon interferes with the electrical activity of the heart, causing irregular heart rhythms that can be fatal.
"With the new study results, for the first time we now have data showing that the standard therapeutic dose of propoxyphene can be harmful to the heart," Dr. Gerald Dal Pan, director of FDA's office of surveillance and epidemiology, said in a statement.
Read more:"
Quality of life- The Daily migraine   
One thing that it mentions is how a chronic and painful condition can slowly take away activities that were enjoyable. And as the author says, often the improvement of a person’s overall quality of life is the goal of medical care, especially when a cure is not possible. So it turns out that understanding what activities make a person happy and content is really important when deciding what medical care is appropriate.

Indeed so I have learned... doing things that improve the quality of life... or the desire to live at all... are just as, or more vital, than the treatments.  And yes, doctors definately should consider this with uncurable conditions, but I find they often do not.  My doctor is a rather indifferent sort.  Before I made my dramatic statement that my quality of life totally sucked, he was not at all aware or even concerned with how I was handling the pain.  Even when I said I was not.  Even when I said it is making it difficult to work.  To think.  To get out of bed.  It was always about try this drug or a quasi sympathtic remark.  Nothing to suggest how I could have a better quality of life given that my chronic migraines were not getting better, given that I do not have decades to wait for them to come up with something that works better.  I needed to know how to have any sort of life given the current state of affairs.  I find it so wierd that he did not pick up the obvious facts I was giving him, important details to how the pain was too much to handle mentally and emotionally.  It was like it was not his concern or problem.  I think it should be a doctors concern.  He can't possibly cure me, so he should be helping me find ways to improve the life I have... instead of me desperately floundering for ways to help myself cope in situations where the pain was too much to bear.  It is like when they tell you to exercise but don't give you any clue on how you are to attain that goal given your current state of health.

Winter is really, really here now

Fall seemed to linger for the longest time, which is fine by me.  Then came a snow storm, all night long, and a plument in temperature and from one day to the next full blown winter.  It did aggravate my migraines when it hit.  And I really want to be a hermit now that it is here... so my going out and venturing into public thing has been slacking... because it is cold out there, and bright, and all that glaring whiteness of it all.  The things about winter...

1) It makes me want to hibernate
2) I hate all the snow... it makes my eyeballs hurt
3) There is not too much fluz in the weather, so not too many sudden weather changes to cause migraines
4) If I have a migraine and I go outside when it is windy and frigid it actually makes my head hurt... just the cool air compressing my skull and the wind biting causing my skin to hurt, because my skull skin is oversensitized from the migraine.
5) I rather feel being a hermit works this time of year really.

Sick or not?

I have been feeling under the weather a bit, but it is just some nasty nausea.  Which means I could be getting sick or it could be a digestive thing or it could be a migraine thing.  Funny how it is when you are chronically ill that we are so very aware of our body's state of being (good pain day, bad pain day, weird symptom day) such that we don't even know when we are sick or just feeling ill.  Not that it really matters one way or the other, but if I knew I was coming down with something I could amp my vitamin C or some other alternative.

There are so many various degrees of crapiness with Fibromyalgia it is really hard to say sometimes what is normal crap or not.  Sometimes it is hard to say whether it is worth mentioning to a doctor.  For example I get this rash every time I scratch that a doc once told me was eczema, which it could be.  I scratch and thousands of little pinprick red dots magically appear, then spread out and turn purple and then look like bruises.  And I wonder if it is an allergy, if it is eczema or if it is a medication thing.  But it never really concerns me enough to mention it.  It is just a weird thing.  Nausea for no apparent reason is also a weird thing that is all to frequent.  But since my recent bout of migraines has diminished, I don't think it is a migraine thing.  There is simply just a flux of symptoms that irritate, make me feel ill, or tired but are all part of the syndrome.  People think FMS is all about the pain, but really the normal amount of pain is not too bad, but all the symptoms can get nasty.

The best laid plans of mice and men...

often go with rye... oops, I mean awry.  It is not an easy feat to cope with chronic pain on a daily basis.  I hardly think I am the first to say that!  Nevertheless, we have our methods of coping, of distracting ourselves, tricks to ease the pain, meds to numb the pain and numerous other little things that make day to day life tolerable. 

And that all goes to heck the moment we are confronted with acute suffering, or enduring severe pain... pain that cannot be denied and rather does not like to be ignored.  All those things I have been fitting into my routine go right out the window along with my will power.  If I can't sleep then how am I to have a normal sleep routine?  If I feel so ill I can't even think about food how am I to eat throughout the day?  Exercise?  You have to be kidding me... I am having issues just getting out of bed.

It's crazy really.  All these things I am supposed to do in order to tolerate the pain better are litterally impossible to do for about a week to two weeks a month when I am suffering from a status migraines induced by my lovely hormones, which also makes the FMS not too fun to hang around with as well.  So this is one nasty, acute migraine that is difficult to treat that lasts a minimum of a week.  Which is why I had issues not calling in sick every month because by the time I got to day three of that seven days of hell I felt overwhelmed by the pain and quite ill from the symptoms of migraines.  So point is... there goes any attempt at a routine.  Then I have to get back into it when the pain goes back to normal.  Every freakin month.

This month being extra special because the weather is turning which has prolonged my prolonged migraine.  Which makes me think way back in the day with certain cultures when a woman had 'that time of the month' they were bed ridden or secluded for the duration... and I think that is an awesome idea, since apparently I don't accomplish much anyway and forcing myself to do so really, really sucks (and obviously has not worked so well for me).  So in theory I would handle working better if during the times when I have a status migraine, most definately 'that freakin time of the month' I would simply have that time period off.  It is either that or more effective ER treatment for status migraines, which is just crazy talk.

Bad Migraine Day Makes Brainless Blogger Totally Brainless

The thing about freelance writing on the side, which you might notice has included my health related essays, is that it does require some brain power.  I got absolutely nothing done today.  Had a nasty migraine from the get go... then it got worse and I was all fuzzy headed and lost the hearing on the left side.  So much migraine fun.  I managed one wee article, part of another and printed up a manuscript to send to a publisher.  Still a little something something anyway, but I am totally drained.  That being said I am having loads of fun writing!

How to save money when you're gimpy

Well, being on leave from work means my income has gone down 25% so far, and more if I am off much longer.  This has made a dent in the old bank book, as in a big monthly negative dent.

1) Create a new budget: Obviously you still need to pay debts, unfortunately obviously, so those must remain in a buget, unless you want to get called incessently from collective agencies.  So you need to chop the other expenses such as groceries and entertainment. 
         a) With groceries, you don't want to stop eating, as that would be conterproductive to surviving your gimpiness.  And many of us have dietary habits that are not cheap... you try buying something without MSG.  So basically it is a matter of going back to basics.  Cut out all the crap really.  The chips, the cookies, the yum yums.  Take advantage of things on sale or cheap brands rather than your fav brand.  Take advantage of coupons, even though, man, they are annoying.
         b) You can essentially cut out all entertaiment.  If your a gimpy hermit, you likely don't have much expenses here anyway.  Although how people expect you to go to yoga or swim classes or anything else when your broke is beyond me... but then again, is that really 'entertainment'
         c) Quit smoking and/or gambling and/or any other expensive vice.

2) Preserve instead of purchase: in the need to save funds don't buy any new anything.  Keep on wearing what your wearing and eventually it will come back into style.  Re-read books instead of getting new ones or borrow books from friends or start reading the backs of ceral boxes. 

3) Only choose hobbies that require no money or ones that, even better, make money.  Things like taking long walks to nowhere and watching things and meditating about the nothingness you are now surrounded with.

4) Recycle and sell:  Recyling can get you a wee bit of return on your consumption of pop or booze.  And you can start selling off your crap on Ebay, or at the local pawn shop.  If you are a hoarder, this will pull in some serious dollars and pennies.

5) Consider your housing... have you ever thought about living in a tent?  I bet it would be cool.  or have you ever thought of renting out any rooms you have in your house to random people?  I bet that would be freaky, but make you some moola.

6) Consider your bills:  Seriously, how hot does the house have to be when you can wrap yourself in sweaters and blankets?  Think about not flushing the toilet all the time or showering every second day.  And if you are photosensative, then remember, you don't need any light in the house during the day and very little if any at night.

I'm Just Saying...

On my blog I have it set that each post is moderated... because, man, I get loads of spam.  Anyway, that's how I roll.  On other blogs I frequent they have that little security word to make sure your not robot, which is a good idea... but, dang, I hate those.  I hate them because my migraine addled brain is dyslexic and confused... it never is able to choose the right letters or even sometimes tell what it is supposed to be.

It is a lot like stripes and checkers... my eyes just go all wonky seeing those.  I abhor closely striped shirts, since it immediately makes my eyes go all wierd and puts my brain in a trancelike state, in which I cannot understand a dang thing someone is saying to me.

And it is a lot like flashing and moving icons... I think sometimes those things might just throw me into a seizure.

I need to fix my brain eyeball connection.  It is broke good.

Victory is mine! Or not.

I think the one thing that holds me back with coping with chronic pain over all is that I can't win. If I lose a limb, that would suck, but then I would be challenged to learn how to cope and then in the end I would, I would get my victory and be damn proud of my accomplishment. With chronic pain there is no end and so there is no victory. There are the things like being proud that we are able to work, but then there is also the whack load of guilt when you are not able to.

If I follow the path and do all the techniques that might help me survive chronic pain better then all I am doing is learning how to lie better. Fooling others into believing I am not suffering as much as I am, and that is no real victory to me, since silience takes a huge toll on us as well. So I am resistent to these suggestions that I need to change my lifestyle in order to cope better. First of all it is like blaming the patient... if they are not doing all the work that they should be doing, having no vices and living well, exercising and taking their vitamins like good little citizens... then they are to blame for not being better. That makes me reistent to playing nice. Now I understand it is all to make me feel better about not feeling better. Which is so much better? Er. Not sure, but I am towing the party line. Nontheless I fear masking pain does me no good. My shrink says laughing off pain makes people believe you are not suffering as much... and that is true, but so does being just functional enough to do all those things she wants... if I can exercise and such, then obviously I am not suffering right?
And in the end lets say all that makes me more engaged with the world and find my bliss and hold my power and yada fricken yada... is that a victory? Not really. It is just saying that I am willing to live with pain rather than simply survive it. A slim difference. Because apparently what I crave is that victory. That I conquered the pain, even though it is there, it does not stop me from doing whatever I please, making it so I do have passions and goals and such fanciful things. And so I am in a constant state of disillusionment, because I will never 'win' enough to make the life I want and having less is a loss to me. And my name (Nikki) does mean Victory, so it is all in the name. If enduring pain in the long term enabled me to achieve what I desire then it would be worth it, as some things are work the extra suffering, but when all my experience has taught me is that I must compramise, I must accept that I will never have what I desire and learn to let go.... and to mean that is giving in, so it really should not be suprising that after years of giving in and 'coping' I am depressed at what is left to me.

That is not to say I am not all for betterment, of trying new things and trying to live well. I just think it is follish to believe that if I change my lifestyle I will feel so much better, when really it will mean I appear to feel better, certainly to hide how I feel better. That worries me a great deal. That I will see some minor improvement that will enable me to join the workfoce full power ahead, just better enough to be able to struggle through it with a smile on my face, but not better enough that that 'sucess' will simply bring me more suffering.


William Ernest Henley. 1849–1903


Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

Nightmares are really starting to irk me

I get the sort of nightmares brought on by sleep paralysis, mostly because sleep paralysis freaks me out. So sometime during the night, I feel awake, but then realize I can't move and then I freak out and wake myself up. Sometimes more than once a night. Thing is now when I fall asleep I dream I am awake, but that something feels wrong, everything is off, which freaks me out and I try to get up, realize I can't move, or move sluggishly, and then freak out and litterally yank myself awake. Honestly this is becoming so frequent my nightmare of waking up, but being lucid dreaming and aware of my inability to move, is rather causing worse sleep problems than my insomnia. Because once I wrench myself awake, it is hard to fall back to sleep. Also since if I do fall back to sleep right away, the same thing tends to happen. Today I wrenched myself awake and swear I saw this shadowy figure standing by the bed, leaning inward... which seriously freaked me out, such that I had to get up a bit before I tried again. Fact is, I have never gotten why people like lucid dreaming as it feels wierd to me. Sure when in a dream, realizing you are dreaming can be fun. But when you have sleep parlysis, you are more aware than you should be, certainly aware enough to know you are in that natural state of sleep paralysis... so it gives you a feeling you are awake, but not quite and to me that just feels wrong. That sense of wrongness freaks me out even before I realize I have mobility issues.

How to be a Hermit

1) Avoid sunlight: Sunlight is evil, but besides that fact, if you avoid sunlight you will avoid 90% of people. In fact, if in contact with sunlight, squint, look confused and possibly scream.

2) Do not leave the house: Your house is your cave. You can randomly heckle or rant at people that come to the door, in fact it is recommended, but do not leave unless in dire need.

3) Do not answer the phone: Lets face it, if you are a good hermit, the only person calling are telemarketers anyway. If you do feel impelled to answer the phone, then feel free to engage the telemarketer in a random conversation about religion, politics and anything that is highly opinionated.

4) Develop good ranting skills: This is a necessary asset to any hermit. Get your rant on about anything, but mostly about 'Those People' and 'The Man' and 'Others'.

5) Act crazy or confused when in contact with 'them' or the 'others': This means basically anyone that is not like you. They don't 'get' you and are possibly 'against' you.

A little cognitive therapy to get your happiness on

Here is the thing about cognitive therapy, we create our own reality and how we react to situations and stress. Unfortunately, we do most of this on automatic pilot. It is all habitual responses we have taught ourselves over time that we just spew out without thinking about it. In order to treat depression we have to be mindful of the thought patterns we already have and eventually override them.

'The flowers are bright, but the person's mind is dark'. Reality is purely subjective. One can choose a pessimistic viewpoint on an absolutely bright and sunny day, while another person can see beauty in spite of the darkest clouds. This applies in every aspect. The first thing the person must do is embrace the experience of depression. Depression does not occur because of some outside circumstance. It occurs internally, when the body and mind have developed a negative disposition.

Depression is closely linked to the conditions of anguish and anxiety. The person is not consciously aware of anguish. Often times, the condition of anguish was caused by the repression of a past event - perhaps a lost loved one, an emotional breakdown, etc. In regard to anxiety, the cause is usually discovered within conscious levels of thought. It takes a little self-questioning on the person's part in order to locate anxiety's root cause.

What lifts depression is the capability to understand it. By understanding the nature of it, the person will be able to identify what it is that's hiding beneath. Like happiness, depression is influenced by the person's habits and activities. The things that surround the person strongly influence that person. If the person is surrounded by negativity and fear, then it is likely that they will experience the same. On the opposite end, if the person essentially chooses to be around positive events, then depression would be less of a problem or no problem at all.

Some of the habitual thoughts are in areas of:

Self evaluation: The depressed mind it an overly crital one. We don't give ourselves any slack. We make any sort of error and automatically we think 'I suck', 'I shouldn't have tried', 'I'm stupid', 'It's hopeless'. As such we blame ourselves for everything wrong and credit others when things go well. We have to avoid black and white thinking, it is not either I am a complete loser or I rock, but endless shades of sucking and or rocking.

Skills: We can make a long list of things we are not good at, or character flaws without acklowedging the fundamental power we have to alter them, and therefore we acknowledge out failures as par the course.

Experiences: We tend to notice the negatives, and remember them, but fail to notice the overall positves to an experience, even if it outnumbers the negatives by far. This leads to such things as assuming the worst is bound to happen, since your negative history suggests that.

Self talk: This is crippling to a depressed person because negative self talk sets you up for failure, so that when said failure occurs, you expect it... I guess in an attempt to save ourselves from disapointment. When confronted with a problem instead of saying 'this will be tricky, but I can do it' we might say 'There is no way I can do this.'

Automatic thoughts: We have more than enough time to have programed ourselves to think and react a certain way. So when something happens in a situation we have a knee jerk response that is often negative. Anything that involves statements with should, must, always, never. Often we have rigid standards we hold ourselves to, impossible to hold to... like: 'I have to suceed or I am worthless'.

Overgeneralizing: Just because I situation went down badly once, does not mean it will always go down the same way. While this seems self explanitory think of all the times you say 'this is always the case'.

All this negative background noise really hits us hard. So the idea is to figure out the irrational underlying assumptions we make, then when these occur to us throughout the day replace them with rational responses. Some people would say it is mindful inrospection, or even postive thinking. Fact is the brain is a broken record that sings the same tune until you override it with something more realistic and functional.

Now at first you may not catch how many times these negative thought patterns rear their ugly heads, but trust me when you are mindful of your own thinking you will realize it is quite often. The first step is to merely record what negative thoughts are occuring to you and what assumptions they are based on. For example one of mine is 'If I am not a functional member of society then I am worthless. I am a liability not an asset'. What assumption makes this true? That my self worth is dependant on what I can do while suffering from pain and when I can not do what I feel is necessary then I have no worth at all. Now this is an irrational belief because our self worth, or our worth over all, is not merely dependant on what we can do (ie work) in addition to the fact that I am setting myself a standard that is damn high.

Once you find out what thoughts are occuring to you and the underlying irrational beliefs and assumptions you are making you are half way there. Then it is simply deconstructing what and why you have that belief. Record your understanding of why you have that belief as well as why it is irrational.

Now here is where the positive thinking comes in. Once you have picked out a list of your assumpions and negative talk, have analysed them as to why they are irrational, then every time during the day one of those knee jerk thoughts hits you, you simply pause, and activily stop yourself, think the opposite. Every time you actively counter these automatic thoughts the more your brain absorbs the new pattern, until your habitual thought pattern is more realistic. So if I think, 'If I can't work then I am worthless' I could think to myself 'No, my self worth is not dependant on work alone and my worth to others has little to do with it.' And finish off with a reinforced positve thought... 'I am worthy.'

This method worked awesome for me back in the day. I am mindful of the negative thoughts that occur to me now, problem is they revolve around my inability to escape pain, so it can be said the mindset I have now is a pit tricky because pain will not go away, it will affect my life and it is not a state of mind... however, the assumptions I make about my life, my worth and many other things, that come from being chronically ill are open to interpretation and those are the things we can alter, thereby helping us to cope, or react, to pain.

Label me not

Alright, I admit I do engage in a little sucidal ideation and, yeah, I did actual try to commit suicide but despite those rather obvious points I refuse to be labeled 'Depressed'. Naturally I can spit out some impressive rationlizations...

1) Coping is not a linear process with a beginning and an end, an end that sits us in 'acceptance' for the remainder of our chronic pain existence. It is a process which fluctuates, sometimes we stick in one stage longer than another, but we will never reach a perfect state of acceptance. Thusly, while I admit to being depressed sometimes, I would hardly say all the time.

2) Migraines affect mood. So while I may be melencholy prior to a migraine, or irrationally and extremely depressed while in a full blown acute migraine... when the migraine is gone the mood is gone. I also get hypomanic before a migraine, but no one would label me manic.

So nice rationalizations. Sometimes I impress myself with my own self denial. But really and truly I deny the label for two very valid reasons. The core reasons.

1) When I was young and undiagnosed with FMS I went to a doctor and said this pain was getting to me, plus I had all these unexplained symptoms that seemed to be rather adding up to something. He took one look at me. Woman. Young. Ergo... depressed. He put me on an antidepressant and sent me off. Well that antidepressant made me an emotional zombie. I slept all the time and only ate when someone dragged me out of bed, and as such lost a lot of weight. I missed my classes, my exams, and really did not care, except I knew I should care. Now I will admit I was depressed. All that undiagnosed pain and stresses got to me. So I know what depression is. I stopped that med. Did some cognative therapy on myself and totally defeated that depression... and, image this, the pain was still there! Wow. So I do not like the assumptions doctors make when they shove that label on someone, because for some wierd reason they think the depression came first and that caused the rest, when it is the exact opposite. They do not seem to consider they ought to treat the underlying condition, rather than the depression. In my mind there are a thousand ways to deal with depression caused my a chronic illness that do not involve medication.

2) My father has FMS and he had a nervous breakdown (I can relate to that, since we had the same reasons... hostile work enviroment). Now I don't know much of what happened with him there so I expect he had more reasons than I know of. Natually in such cases he was forced to see a shrink (and totally relate to that). They got the entire family together for a group session which was brutal. They implied he was depressed in truth and did not have FMS at all (because a shrink would know?) and seemed to convinced him of the same. I was totally insulted and disgusted with the whole thing. Strangely enough my father tried to commit suicide a few times after his oh so not awesome shrikage treatments (um, apple did not fall far from the tree there, eh?) I can relate to his suffering and I know what we all go through, but sometimes I swear shrinks are just plain dumber than dirt.

Since my depression when I was younger (18-20) was profound and pretty easy to accept and understand. I certainly did not deny it then. I certainly did not get any help from doctors or shrinks. I remember that time vividly. And I do not feel like that now. So I still have trouble with that dang label... unless it was more 'episodic depression depending on pain levels'.

Nevertheless, I have to acknowledge the facts. Most people do not deeply desire to have a stroke when they get an acute migraine because a stroke would be a valid reason to miss work. I quite aware that it is not normal to feel that way. I can accept the facts, the habitual thought patterns and the negative behaviours and I can work to change those to tweek the old coping skills a wee bit. So I can deny the label and still modify my behaviours. But I swear, if people start to say if I were not depressed I would not be in so much pain I will throttle them. I get enough with the if you only changed your lifestyle completely you would feel better crap (which I also do not deny, but things are far more complex than Those People think).

Now that I got that out of my system I will follow this post later with a little cognative therapy bit that helps all of us that are depressed, indulge in some sucidial ideation, pray for a heart attack, but not really depressed depressed, or actually depressed depressed. :)

I would love to just redirect you to the new site...

But sadly the redirect function doesn't function. I will continue to persist hitting it and see if it will eventually do something. Or s...