chronic migraines chronic pain the life

Reflecting on 2011

Someone from a migraine forum posted a poll regarding how many migraines we suffered in 2011 and my answer was above the highest possible answer for the poll, which made me reflect a little on this past year where I have suffered an estimated 300 migraines, possibly more given some months were quite nasty.

Life lesson

2011 was actually an exceptionally bad year.  Bad from migraine frequency.  Bad for emotional well being.  Definitely bad for persistent long lasting random symptoms.  Some might think it was, in fact, better than 2010, given I did not try to kill myself, but honestly, that should not be the meter to rate ‘successful’ treatments by.  But by all means, if your chronic migraine patient kills themselves consider the treatment a big ‘fail’.  This year was so bad that if I had not reached that emotional and physical breaking point in 2010 then I would have in 2011.  Maybe inevitable really.

We all likely have our own breaking points when it comes to pain especially when other factors are tossed into the mix.  Always good to throw out a reminder of that suicide attempt by the way, because I have to remind myself of what went down.  It still feels unreal to me.  Maybe because there was no real backlash from it really.  Don’t get me wrong, for a bit there everyone was stirred up and I felt really bad about that, and still do every time am reminded of what pain I could have, and did, cause to others.  But there were no discernible changes to my medical treatment (aside from being taken off Cymbalta and being put on an alternate, stronger, sleeping pill for a short duration).  It was like they completely understood how someone suffering that much pain all the freakin time would go there, but because it was completely understandable such that any rational person would go there, there was no reason to be overly concerned about it.  Even though the pain levels remained the same.  The treatment was not really changed.  Expectations on the work front were exactly the same.  … yet… even though all the conditions remained the same they did not think I would go there again.  Which actually if I were inclined to do so they sure made it easy for me to do so if I wished.  There was just enough concern to ensure I was not going to jump off the nearest bridge but not enough to effectively do anything about any of the factors that led to the desire to do so.

When I realized how completely indifferent the world was to the amount of pain I endured it actually made me more depressed than I was in 2010… the irony of that is freaking hilarious.  So I was a bit numb at first.  Sort of just dumbstruck that when certain professionals were forced to become aware of the actual amount of pain I endured and did not care to do anything about it anyway… it hurt me in a real way.  Totally different if they do not ‘get’ how much pain you are in.  After the numb faze came the angry frustrated faze (why won’t they do something?  Why do I have to endure this?).  And then just the acceptance phase (obviously nothing I do, say or feel is going to change a damn thing so just… do what they want).  Such that at the end of 2011 I was just tired and ready to move on.  Really the last half of the year has been survival mode… I was in too much pain, too tired, so I just got through one day at a time.  When there is that much pain things get hazy, so I don’t remember much after the emotional rollercoaster was finished.

So 2011 should have been more about recovery and stress reduction, but as usual, not.  Weird how every time we realize we need to seriously reduce our stress levels the rest of the world decides we are not ‘sick enough’ and begin to torment us endlessly.  Not saying it was a bad year for that per se, just still reeling from 2010 really on that score.  Spent the first three months of 2011 just being emotionally numb and coming to terms with the fact it made no difference how my emotional welfare was because no one but myself and my family cared or took it into consideration.  It was like the emotional pain was just an unpleasant side effect of chronic pain, to be expected but not that big of a deal.  I just had to suck it up and remind myself to be emotionally okay with that… because, trust me, for a bit I was not okay with that, just the fact I was being forced to endure more brought tears to my eyes.

That being said after 300 hundred migraines imagine how many sick days I had… I actually don’t know but I know it was high because I remember being reminded of it more than once by the boss lady.  And even though I had too many sick days I was not threatened with being fired, so in that sense, 2011 was a rather good year.  Except the usual guilt from missing work and the unfortunate fact my migraines have been so severe I literally could not even ‘show up’ in a boatload of pain and coast through the day, because I was doing that, a lot, and there were simply some extremely acute untreated migraines and persistent status migraines that slipped through the cracks of my ability to treat them and/or my ability to cope with them.  Not nearly as many as you would think with that whole 300 marker, but too many.

Nothing changes.  Nothing stays the same.

I want to hope 2012 will be better, but if the past predicts the future then that sure isn’t going to happen.  But less awful would be nice.  You know when your medication is just that perfect balance where yes, you still have chronic pain that cripples all aspects of your life, but, you have just enough control to maintain, to sort of function and to get by.  That there is a damn good year.  Most would hope for better but unfortunately, I have to be realistic.  My best year was when my medication was at that best results of a 50% reduction in migraines.  That means my bestest of the best years I had about 150 or so migraines.  Still chronic.  Still really, really not fun.  But just better enough I could feel like I was getting somewhere.  Let’s face it a 50% reduction is damn awesome even if it doesn’t sound like it sometimes.  It is also very hard to maintain because it is not just the perfect amount of medications, it is also about other factors like other crappy medical conditions, lack of sleep and in some years an insane amount of work stress.  So getting back to that would be so awesome.  That is what I want to get from my net neuro appointment… I’m almost desperate with this hope that he will just do something.  I don’t expect a cure, man, just a little less crappiness is all I ask for in the new year.  Although given the weirdness of my symptoms lately I really hope he is on the ball.

Okay.  Point is. 2011 sucked balls.  Let’s just forget it happened… I mostly have anyway. 2012 will not likely have any vast improvements.  The secret is to actively not think about how much it will suck and to force yourself to repeatedly believe it will be better for whatever random reason.  Pick and reason and go with it.  Don’t reflect on the past for longer than a day because reflecting just brings to mind all that suckiness.


One comment

  1. Great way to look forward. 2011 sucked balls for me too. From May to about November it is a blur I don't remember too much.

    Is there ever a possibility for you to travel somewhere to see if there is better help for you??

    My life was such major suckage of unremitting pain I started emailing world class researchers and specialists I found in PubMed (there is an email link on many abstracts). I went on hospital websites, I talked at length with clerks who answer telephones to get into doctors who were booked up for a year. I went on, and a doctor from India helped me discover the Cleveland Clinic. I had one or two of the researchers offer to review my two foot high stack of medical records and see if they could work with my local specialists for free. There are kind and knowledgeable people out there in the world no matter where you live that are willing to help and the blessing of the internet is that it is easier.

    Hoping that you find a person, a specialists, a doctor, a clinic, a hospital system – whatever it takes – to help get your life back on track where the suckage is much less and the best of life is much more. Good doctors take note of things – medication is not always the answer but it does help – plus for me getting the occipital stimulator has been a god send.

    I worry for you because I have lived at those dark places where the pain is all that exists and the rest of the world is unreal and doctors throw one drug cocktail after another at you until the symptoms from the meds are hard to distinguish from the symptoms of the headache! Hang in there – I am sure 2012 will be a much better year!!! I could not imagine in 2008 that in 2011 I only have had to go to the ER 8 times all year for The Heachache, compared to 8 times a month in 2008.

    Ya don't gots to publish this. Just wanted to give you a boost and say you can make it better someway somehow. Crossing my fingers, my toes, my eyes and my teeth (well maybe not my teeth) that the answer for you is out there somewhere.


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