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.

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...