Alice in Wonderland Syndrome AIWS Day

Overview of Alice in Wonderland Syndrome

Today was one weird AIWS day.  Normally when I get AIWS migraines I do not go to work, I do not drive and generally I try not to move.  It like trying to move in a funhouse when you feel distorted and so does the envriment.  But missing work is not an option so I dealt with it, but I should have found a ride somehow because that is too much for me even to handle.

Today I drank the vial that made me small.... as in I felt I looked about three feet tall, that the ground was way too close and my feet kept mis judging because it did not match my eyes.  Everything else seemed too small, warpy and too far away.  When I drove I felt like I was going really slow down suger stretched out roads and when I stopped at a light... still felt like I was moving.  All this made me sick to my stomach.  Then the migraine kicked in super instensely, as those ones always seem to be, but they usally only last eight hours... or maybe it was the aportive, pain killer and nap I took after work that helped beat it?

My Birthday next week

I actually forgot about it, but maybe that is because I have been focused on getting through the day more so then any specific day coming up.  Still, nice to know I survived another year, which is always a pleasant surprise.  Thinking on that I went through my old journals, just to remember some things, since that is why I was journaling... to remmeber things.  It reminded how insanely inexperienced I was when I was younger, even though at the time I suppose all that drama was important.  There was some good stuff in there, some painful stuff and a lot inbetween, but what stuck out the most was that I could literally see the decline in my health as I progressed through the years.  Back when I was optimistic and surely thought it would all get better.  Of course it didn't and I could see the battles I had with that realization and all the little compramises and sacrifices I made along the way.  I could see the pain winning inch by inch.  Until it reached that point where there was nothing to write about except that battle with endless pain because that was my life.  Is my life.  It does not matter if I am having an awesome day or a bad day, taking a great holiday or just slacking around the house, that pain battle is hovering in the background like constant brain static.  Effecting every choice I make.  So that is what sucked the most.  Because no matter what choices you make, what compramises you make, to ease the pain a bit you ought to be able to find contentment and happiness in everyday events, social activites and hobbies.  Have a fullfilled life in other areas.  While I think that is possibly an attainable goal, assuming I could ever find the energy after work to actually do something, it is clearly not something that is reflected in my personal history.  What I see is someone retreating more and more, just trying to stay above water, and becoming a hermit.  Surviving, mostly.  Surviving because I still had a few lingering dreams and hopes which were obliterated last year, which has left a void I still struggle to fill somehow.  And I think what a moron that shrink was to imply I could fullfill some of my wants when that there was unrealistic and rather cruel to imply when it was not true.  However, as I said we can survive and endure with the simple things, we just have to find the things that do not add stress and make us happy just by doing them.  But damn that is hard.  I was thinking of making a Bucket list of things I would like to do, to experience, just to give me reason to anticipate the future... but I am drawing a real blank on it.  Except that I want a tattoo.

Anyway I was thinking it should not be so hard to find a little peace despite our health issues.  Obviously we cannot deny those health issues since they have a way of reminding us they are there.  Obviously that does limit some options in our lives.  But it should not control our lives until we are just consumed with the idea of surviving.  I know when I was off work, blissfully, I got a great deal of enjoyment from writing essays and papers to post on those sites like Hubpages and Bukisa, as well as of course, my enjoyment of creative writing.  And I think it would be a good idea to direct my free time in this area because it makes me happy and not because I will get any tangible reward from it.  And that there is a start.  The largest obstacle to this task is the fatigue I feel after work and the grogginess I get once I take my Elivil at night.  Sucks the brain power right out of me.  Unfortunately, Elivil added to my other two preventatives works just enough to make it worth while to stay on it so I have to work on my motivation to do something, anything, besides the effort it takes to endure work.

The irony was amusing at first

While doing my yearly review learning at work I did a module on dealing with customers with mental and physical disabilities, visible or non-visible, with respect and consideration.  While it is very important for people who deal with the public to have that consideration wouldn't it be grand if they treated their employees the same way?  Not to say they do not, or at least in some places and most definately with visible disabilites... as I recall I was told there could be no considation for a condition like mine, being pain and neurological issues, but if I needed ergonomically correct office equipment they would get right on it.  You see most companies have a policy of non-discrimination against people by age, sex, race and disability.  I question however if they have any training for managers and up on how to treat people with disabilites, visible or non-visible.  It seems to me if they understood the psychology of the chronically ill they would not screw up so much in helping those individuals adapt and excell in a work enviorment.  I mean We know what it feels like to feel trapped, angery, fustrated, depressed and insanely guilty when it comes to our relationship with work depending on the day, the pain and the expectations.  We understand how much of an impact a manager has on a disabled employee when they make any sort of vague threats or comments on how they are not meeting expectations.  It is idiotic to tell such a person that they Must do certain things and the Must be present at all times and their performance Must be error free.  You cannot treat them like they need an attitude adjustment or that they are irresponsible children.  The mental and emotional impact cannot be denied even for those of us who manage to remain positive in regards to life and pain management.  Worse of course when we are feeling particularly ill or in more pain to have such treatment.  And such treatment would not even be seen as wrong by most people.  But it is.  They should want to empower that employee to find ways to adapt to the enviroment, to manage stress and to find those small compramises that will get that person through the rough times.  That is something an employee can do, since that is what we try to do with every other aspect of our lives, we simply do not have the power to do so with infelxible employers.  So it simply makes sense that it would be incorporated into management learning.  Otherwise policies will be interpretated as people see fit and people with disabilties fall through the cracks.

Life can be such a contradiction

I am going to go for work training for a position I was supposed to do years ago but got canceled due to one leave of absence or another.  I want to get it done because doing the job I am now which is the same in every way except for one small difference I get paid less while other people with no experience get hired for the higher position with the higher wage while they take their time to do the training.  No fault of theirs though, just idiotic work decision making there but rather irks me.  Yet who am I to complain?  I am just that less dependable person who works great when I am there but is not considered to be good employee material due to having the audacity in having a chronic condition.  I feel like I do not have the right to complain or make demands.  Like even I blame myself for my illness, which is just plain stupid.  I know I should have made a formal complaint in how I was treated in the times when I was not doing very well physically and they liked to kick me when I was down but I never did.  Not even when it almost killed me.  While I hold myself accountable for every single thing I cannot do or do not do well enough I never held them accountable for the emotional havoc they put me through that made everything so much worse.  I am still tempted to, because I do not want anyone to ever go though what I did because someone does not have the proper training to handle a chronically ill staff member, but I always fail to do so because I do not want to make a fuss and I do not want to adversely affect someone else's career when that error only affected me, no matter the consequences of that.  Odd that I can be sympathetic, not want to cause another person to suffer in any way and can forgive so easily when I was not shown such consideration.  My point is, I do want to get this training done.  It is achievable.  It is a short term goal.  And that is about as far as I can allow myself to have any ambitions at all.

It will not however make my work situation any better, but nor will it make it any worse.  In fact like every single thing since last year and my suicide attempt this is simply a reflection of how absolutely nothing changes.  Now it must be pointed out that my boss had to push to get me to go to this training, despite the fact I was set to go to it before but had been demoted instead.  And I find that a little insulting really.  I mean I am glad she went to the effort, despite past errors on her part, but it makes me cranky that my employer seems to think a disability is some sort of personal failing on my part.  Yet they proclaim otherwise in their promotions, just don't walk the walk.  What is sad about all this is not that my employer really tried to screw me over in the past, because that is hardly a surprise (I'm sure many of us have similar stories about their disability in the workforce), but rather that I feel there is no point in trying to change their perspective.  Or anyone's.  That the fight to say my needs count for something, that I have just as many rights as everyone else, that my suffering is not tolerable... is simply no longer there.  Sure I survived my own attempt at ending the pain for good, but it was horrific to know how little that changed anything.  It is easier to endure even the most severe of migraines for eight hours any way I can rather than call in sick and ensure the guilt placed on me for 'missing' work, for 'failing' my co-workers and customers.  I think it was nice before when at least I had that glimmer of hope some medication would work, that my doctors would understand my suffering and also think it was intolerable it was ignored or that work would compromise with me like they would for anyone else with a 'visible' disability. And I don't even have the mental energy to be depressed that is the case or to strive to make it any different.  My doctor wants me to check in with my neuro and I simply do not see the point... he messes with my meds and it could dramatically effect my pain levels and desire to continue to survive and if I am not sick 'enough' to qualify for some consideration to make my life just a little teensy bit freakin easier then what is the point of screaming when no once can hear you?  It is like one of those horrific sleep paralysis dreams but in real life.  It is like bashing your head into a wall repeatedly... it will just cause you pain and the wall will not give.  So it is less emotionally painful to do what others want me to do, as best I can, so I can suffer in peace at night and not have to fight every single person for just a hint of a chance to make it slightly better.  I am out of my depressive funk but still ambivalent to my own survival.  Since apparently there are no compromises and the patients opinion does not count and it is frowned upon to have an exit strategy I find myself giving up on others because they will never get it but maybe I can find a Migraine Canadian charity to help out with so that maybe others will not become so disillusioned and we will not lose any more of us to suicide.

What to do or not to do

Work is a complicated situation when we are ill.  Constant issues arirse at work when it comes to chronic illness.  It can be hellish.  Where I work we have a policy not to discriminate based on disability and other rules they have not followed with me.  We have a group not affiliated with the back to report these things.

And I feared for my job at the time so certainly did not want to piss people off... we have a no retialitation policy as well but we all know these are around that one.  I was threated I would get fired on more than on ocassion, told I would not get the promotion I have been aiming for, told I would get demotion, was in fact demotted after one leave.

So I wonder if I should report all that, my blog being a good way to track what occured and when.  The reason I think this is because I am no better than I was and it could get worse and I will end up with loads more stress as a result.  Or, conversly, someone else could have similar health concerns where they will treat them the same way.  And that is just not right.  But I debate on whether to mention it.

Holy Hell I hate the sun

I am hunting for some very good specs because glasses with the clip on sunglases, does not cover anough and I am still bombared in the eyes making them hurt, water and spike up migraine pain.  Specs are very important.  So I give up on compramises and I found a sunglass store where I check off all the things I need and will see if I can fork out that amount or not.

When You’re Not Sick Enough

When You’re Not Sick Enough A very good essay. And when is sick enough enough anyway? And no, I have proven it is not when you want to kill yourself or when you try to kill yourself... maybe when you actually do, but then it is rather moot. And I hate that people have this unreal expectation that you ought to 'look sick' and that when you 'look fine' clearly you are in no pain. That is plain idiotic. When I look like crap it is usually when migraines hit that special lets throw up all the time look of pale and trembling. Or that I have not slept in days because I can't bludgeon myself with a pillow look. Otherwise pain is rather easy to mask... with a little extra makeup and a fake smile no one knows the difference. Unfortunately 'sick enough' to warrant long term disability is really not something everyone agrees on. Although it is odd people seem to think I am okay to work every day full time when working every day full time without to ability to call in sick is what led to my little leave of absence in the first place. But clearly trying to kill myself because of my pain problem amazingly cured my pain problem such that now I am totally fine with enduring a daily torment much like I image hell must be like.

A very bad migraine weekend and Monday

Sometimes a migraine just goes effing out of control.  If I managed to sleep an hour straight last night I was not aware of it.  I tossed and turned.  I was too hot, too cold.  Nausea and with abdomen pain.  With an intensely sharp migraine.  Oddly enough right before I Needed to be up and I was out cold and somehow managed to bypass my alarm clock altogether.  An awesome way to wake up already late for work in severe pain with a bad case of confusion and vertigo.  I was not a 100% sure it was Monday or what time I was supposed to get up.  Just out of it.  I decided that today was simply a day that was not going to be achieved and I called in sick.  Which was a good thing because it went from bad to worse.  It is amazing how fast you can feel like you have the worst stomach flu ever and not actually be sick.  The migraine pain though was intense.  It hurt to move my head.  It hurt to breath.  And it definitely hurt to walk.  Even though every blind in the house was closed it was Way to fricken bright.  And my vision just went haywire.  With the photosensitivety sometimes comes obscured, blurred and double vision and that was the case today with the right side of my visual field.  it was like looking through a haze and every object was so doubled it was practically two distinct objects.  The invasive light making everything even more hazy.  And periodically through all that were some bright white shooting stars.

So having used a sick day I can't do the same for a couple of months, which sucks.  I must, must make a doctors appointment ASAP.  I should have today but what was the point, given I do not know what my calender looks like at work and I have to find a time to get that done either on my lunch or when I am not scheduled with a customer.  However, very important I get it done since I am completely out of sleeping pills (uber important when I can't seem to sleep) and Lyrica (which is also vital since it is one of the three preventatives to manage the migraines, somewhat, occasionally).  If I had bloody well managed to get into work then I would likely have an appointment already or at least enough meds faxed in to make it to the appointment, but my brain firmly disagreed with this plan. F U brain.

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