Definately not a success

Migraine knocked me hard today and maybe that was why I was so groggy yesterday.  Anyway I called in sick to work, not because of the pain because let's face it nothing new there, but because of the other not so pleasant migraine symptoms that went into overdrive.  Feels like I have the stomach flu without the flu part, although all day fighting this thing and I do feel like I've had the flu for a few days.  Wake up in the morning migraines seem to be the worst for this because they are already full blown... you don't even get a chance to manage the pain and other symptoms.  Going to work however is very important for several reasons that have nothing to do with me, but you know you're down for the count when it is not only the acute pain making it difficult to move but also the distance you will have to move from the bathroom that are an issue.  So I took my triptan and a painkiller and tried to sleep it off... without having the phone near me so my boss could not call and guilt me into going in.  Which she would.  Anyway, long story short, I still have the migraine, my stomach aches and for some reason that triptan decided to give me chest pains.

And I have that sick feeling that tells me I feel guilty for being too sick to leave the house and that I will not have a pleasant day tommorow.  I loath it when other people make me feel worse than I already do but on the mental and emotional level as if it is just not enough for them that I have to battle all the physical pain every damned minute of every damned day.  At least there are only two days left in the week.  I can get through it knowing that as long as I don't think about the next week.

Remember the magnesium has an article about magnesium today, and you know, I am really beginning to love that sight.  They have some awesome info on there.  Anyway, magnesium.  Apparently about 50% of us migraine sufferers are deficient in magnesium. (And for those of us with FMS, chronic illness and IBS can also make you deficient in magnesium and studies have shown for FMS, as well, we do not actually process it well and this dificiency does not show on bloodwork).

"Magnesium is an essential element that is vital to the function of every cell in the body. It regulates literally hundreds of chemical reactions, modulates the function of
various cell receptors, helps open and close blood vessels, and performs many other functions. Changes in some of these receptors (serotonin, NMDA, and others) and blood vessel constriction are intimately involved in the development of migraine headaches. Our research also showed that a regular blood test is completely unreliable.

So, how do you know if you are deficient and should take a supplement? Here are some other signs of magnesium deficiency: cold hands and feet or just feeling colder than other people around you, muscle cramps in your legs or feet, which often occur at night, and PMS symptoms in women. But you may be deficient even if you don’t have these additional symptoms and since there is little downside in taking a magnesium supplement, it may be worth a try." (

Personally I know I have a migraine deficiency because a) I have FMS and most of us do, b) I have IBS-D which gets worse with migraines which means absorbing vitamins is an issue and c) I get wicked muscle craps in my legs at night and sometimes in my neck, shoulders and back.  In my case I think I might go for the magnesium shots.  But until I ask about that I have added my magnesium pill to my other pills in my massive pill box sorter so I don't forget to take them regularly this time.

Other vitamins that might be good to add are your stress B's and vitamin D (vit D for sure if you are like me and work rather poke your eyes out than walk in the sunlight and get those D's the old fashioned way).

I found something to distract me from the pain...

.... more pain.  My whole week off has been one, long migraine week.  So the infinite amount of things I ought to have done, I simply did not want to go there.  But, on Friday my migraine was not so bad so I thought I should do some exercise, since I have slacked off on that while we had a house guest for two months.  So I did about ten minutes of yoga and such.  Nothing major.

Now yesterday and today the pain in my arms is so bad I can't actually straighten them.  Elsewhere also bad, but my arms significantly worse.  So the FMS pain related to actually moving my muscles distracted me from the migraine pain.  Yay!  I still don't know if exercise is even all that good for FMS, but for some reason I think it is a good idea to move my muscles once in a while before they just decide to give up on me.  What seems to be important is doing this minimum amount about three times a week if possible... because skipping a few months and then doing it is not fun at all.  I slathered on a bunch of muscle cream to help with the pain a bit, but still can't really straighten my arms.  Might be because I am quite double jointed, so my arm straight looks backwards and curved and my muscles are protesting that right now.

I wish there was a point to all this

There are times when I think about the decades of pain ahead of me that I am just frozen in terror at the thought of it.  So I tend not to think. Period. Sometimes though I want to do something about it.  Not me specifically because I do quite few things that make little difference, but rather for us altogether.  Raise awareness or something.  Because those of us with chronic pain suffer so damn quietly.  I know that hurts a great deal and we suffer more because of our silence but also we feel that our voice is not heard when we have the audacity to complain about our pain.  That is the fustration I have faced this last year and why I get ticked when people tell me how well I am doing.  It is like last year never happened.  Like my losing the battle was no big deal.  It should be though, right?  I may have accidently survived, but some of us don't.  I mean I complied a collection of my past diary entries and blog entries so that I could see the very slow progress to that suicide attempt and it is nasty, but asside from that, there were at least five posts or entries refering to someone else killing themselves.  We care about that.  We worry it could be us in five years or ten years.  But after last year I just felt like I had no voice.

I love having a blog because it gives me a voice and maybe that helps anyone that reads it.  I sure hope it does.  And I write articles, as I have posted on the side bar and I think those might help bring awareness to facets of our lives.  And I could even make an e-book with those articles and blog entries and sell it, but it would not reach many people.  Maybe I could donate the proceeds to a worthy migraine association.  And then at least I could try and help us.  Not sure if that would work, but it is something I was thinking about.  And myabe I could have others write a bit about their struggle and add that in.  Or write an essay about what the pain does to them. But I would need to know of a good migraine association to give the donations to.  In Canada I have not found much, but if anyone knows of any I would like to know.  If not, then an American one or a National one. And I have another option that I am thinking about to get the word out.

I want us all to connect together.  Read each others posts, make comments.  Give support when needed.  Share stories.  I think us connecting together is important.  I just wish I could do more.  Reach more people who suffer like we do, reach more people that done so they can finallty 'get' it.

I don't know but maybe if I could do my part in raising awarness or helping others then there would be a point to all this.

Finally! Some Awesome news about Triggers

I cringe every time someone asks what my migraine triggers are.  I get migraines more than not, quite a bit more... so I think a good response is 'Existence', 'Working' or 'You'.  All fine answers depending on the person.  Worst of all are the people that tell Us what we should Not do because it is likely the cause of all our migraines.  Because clearly we all have exactly the same brain... so obviously we all have exactly the same triggers?  Quite frankly I don't care if they are right... I just don't think they have a right to tell me what to do about my health.  I don't go around telling people their donut habit is triggering their fatness (last thing I need is someone telling me eating chocolate cheesecake is not only causing my migraines but also causing a weight issue).  Or that beer is triggering their morning nausea problem. Or their stupidity is triggering my slapping them in the face problem.  We all have things we could change to improve our health and it is just not polite to tell others what they should do, for a problem they have never experienced while ignoring the fact they have their own damned problems.  I'm just saying.  That ranks up there on the top ten things I hate people say about my migraines.

On to the topic though.  I have given up caffiene because I heard it can trigger migraines and my doctor recommended it.  So I did.  It made no difference.  One difference it made was to shut up all the damned people who kept telling it was clearly the cause of my migraines. I'm not really sure if it did anything else since migraine pattern frequency remained as it is.  Too bad, it would have been nice to have them reduced from such a simple thing. I had a neuro once who told me once my hypothyroidism was treated my migraines would be substantially reduced, but he was wrong as well.  Triggers are tricky and numerous.

Here is an interesting read about food triggers. Food triggers and Elimination diets I've been meaning to try an elimination diet but my doctors have never recommended it and, in my case, it would have to be monitored by them.

Now on to the awesome news: Chocolate is not a migraine Trigger!  Yay!  Okay, less of one. The Good news about Chocolate  For me chocolate is not a migraine trigger, but in that first stage of a migraine it is something I crave.
"We concluded that people may be eating chocolate in response to other migraine triggers, like skipping meals, stress, and menses, and then falsely blaming the chocolate for triggering a headache. Chocolate eating can also be a response to cravings that often occur at the first stages of a migraine that has already started. While chocolate may indeed be a trigger for some people, it’s probably not a common trigger as had been previously believed."

Try to think of ways to describe...

how much my head hurts but not repeating myself.  It's tricky, because let's face it, chronic migraines are disabling but rarely treated as a disability.  So just saying my head is killing me does not cut it.  Kind of ignores all the funky and weird neurological symptoms, which frankly when people ignore they think you just have a headache.  I was thinking about how we describe our pain today because I said to my man 'My head hurts so bad my teeth ache'.  You know the sort of migraine I mean.  When it lingers so damn long the pain begins to migrate away from the head, into the jaw, the teeth, the neck, the shoulders.  Now That is a migraine, eh?  If I say my head hurts so bad my toes ache, that is a clear indication I am about to overload and explode.

So what can we say...

My migraine is so bad I just vomited a little in my mouth (eewww).  (although truthfully I have thrown up right outside my vehicle when arriving at work, then in my trash can and then in the bathroom a few times... so maybe we should say this and give people a little warning.)

I'm eighty percent sure the room is spinning or I have a migraine.

My head hurts so bad I can't blink.

My migraine hurts so bad the pain is maxed out in my brain and has now spread to my teeth, neck and, actually, my entire skin area.

No, I'm not a recovering crack addict but my brain hurts so much I got the shakes.

Either I'm psychic or I'm having a visual migraine aura.

Ever stopped walking but the floor keeps moving? No?  Then you don't have the migraine I have.

My migraines make me so sensative to light I'm seriously contemplating becoming a vampire as I assume That would be a valid reason not to go outside in the daylight.

Sorry, I can't hear you over the ringing throbbing pain in my ears.  Are they bleeding, cause I can't tell, it's all numb.

Living with chronic migraines is like being delusional with dementia; you can never be sure if what you see, hear, smell, taste or even feel is real or if your brain is messing with you, but it's quite alright because you forget about it the next minute

Thank god for holidays

This year I tried to spread my holidays out so every couple of months I would have a breather.  In other words, not having to work so I can suffer in the blissful darkness of my own home.  I said it before and I'll say it again: never underestimate the power of being able to suffer alone.  No facade to maintain.  Sleep if you need to sleep.  Get up when you have had enough sleep.  No need to go out into the bright, noisy world and pretend the whole time that the shards of glass in your brain are not stopping you from doing what society wants of you.  Hell, just not having any demands made of you for just a freakin little bit.  Just pure awesomeness.  Maybe not the sort of holiday other people think about... but for us lifers, it is just so awesome.

I have just started my last week this year of holidays.  And not a freakin moment too soon.  I have been just absolutely fatigued lately.  I don't mean nappy or sleepy, I mean mind numbing fatigue, can't keep my eyes open and too groggy to remember my name, the date and what the hell is going on.  This sort of fatigue could be from the spectacularly horrible month of migraine hell, but not like that is uncommon   Or it could be a bit of a FMS moment... where pain and fatigue just hit you like a wall for a bit for no particular reason except to make pain management that much more fun.  I am really just too tired to do much of anything right now.  I think it is an FMS flare actually, because I have had some nasty shoulder, wrist and arm pain that is more intense than what I might expect from a month of migraines, but really migraines and FMS play way too well together and sometimes it is damn hard to separate one from the other.  Anyway, I think I broke my shoulder, or at least it damn well feels like it.  Stupid FMS.  Still I do find after a couple decades of FMS pain, and the horrific flares that happen, I can tolerate that pain quite well.  I may walk gimpy for awhile.  I most definitely smell like muscle creams.  I use the occasional wrist brace.  I most definitely do not do anything that requires walking for more than five minutes.  Other than that, that sort of pain is my baseline pain.  It is equivalent to a normal person's zero.  Sometimes it spikes right up there, but normally it is just there in the background making me aware of how I cannot move in my environment   So who knows?  Maybe another decade of chronic migraines and I will begin not to scream silently in my head at the very thought of walking out into the sunshine and spending eight hours under florescent lights, in front of a computer screen trying my damnedest to understand what the hell people are saying.

I wonder sometimes what it feels like to be in no pain.  I think sometimes all that background pain is like static or electricity.  You don't realize how bad it is until the power goes out and all that background noise just stops and it is so quiet you can hear yourself breath.  Like maybe people who are not in pain are just not as aware of their movements and their bodies as some of us are.  I know I perceive time differently.  The future differently.  Goals and ambitions are very short term ones.  So of course I perceive space differently and how I move in that space.  I am always thinking about the cost of doing things.  How much extra pain I am willing to go through to achieve a goal.  Like recently we had to clean the house because I am refinancing my house, so we needed an appraisal, which means I at least had to do some of the cleaning I have been to tired to contemplate for the last few years.  Washing walls and such.  Even with assistance  after accomplishing more than I thought possible, I was impressed... but the price was nasty.  I mean of course I felt muscle fatigue and pain fairly quickly. (less than if I was not on Lyrica by the way).  But that instant pain is nothing compared to the agony the next day.  I could barely walk.  The pain arched from that damned tendon on the bottom of my feet all the way up to my hip joint.  Of course the pain lingered for about a week.  I knew that going in, but it needed to be done so I weighed in the pain factor and just got it done.

Apparently all that intense migraine hell and fatigue are not affecting my appearance  since everybody is telling me how good I am doing.  Nice little pat on the back.  At least I suffer well.  As I mentioned in a post already this month these comments are getting on my nerves.  I expected them though, because I have been playing by everyone else's rules lately and so of course I seem to be functional.  Outwardly.  Going to work is all that is really required of me.  Once I get there, no matter how much pain I am in it is just a matter of getting through the day minute by minute if need be.  Getting there is damn hard work... and a fistful of meds.  But we all labor under this problem.  Pain cannot be seen.  So it can be doubted.  When I was obviously struggling with it last year, people noticed.  Because the very thought of getting through the day brought tears to my eyes.  That was from the emotional strain of dealing with chronic migraines combined with guilt of missing work combined with the intense stress work shoveled out to make me feel that much worse.  It happens.  It is a heavy, heavy burden to bear.  After my leave of absence when the fact hit home that nothing I said or did or how I reacted would change a damn thing because although I was sick, I was not sick enough.  The pain did not change at all.  I just bottled it up and tried not to think about how much of a price I had to pay to function in the way people expect me to.  So I show up.  I get it done.  So that I can get home and just relax for a moment to do it all over again.  I just put my facade back on, the very same on I have worn for a long, long time.  It just cracked a bit last year.  Now it is back on and everyone thinks I am 'doing so well'.  And since they all believe that, then maybe I am.  Maybe I don't need to hope things will get better.  Maybe survival is good enough.  Maybe if I pretend hard enough I will even convince myself I am doing better.  I've done that before after all.  I am the only one I really need to convince that I can survive and that I want to.  I really believe that the little lies we tell ourselves can make a huge difference on how we survive.  I just need to find that believable lie.  And then even I will say I am doing better, instead of feeling awkward and uncomfortable when people tell me this because I know it is not true.  Plus with all the migraine aura fun I know something other people just do not get and that is 'seeing is not believing'.

Migraine crunch time

What a bad migraine week. Mostly because I had a crappy migraine weekend which pretty much guarantees a rather cruddy week. Ironic that I have had a few people tell me how well I am doing. 'But you don't look sick' syndrome to the nth degree. Although relatively speaking I am doing better... because of course I am not so traumatized with pain that I have an active death wish. And I am not indulging in optimism or hope, which then lead to disillusionment and frustration. But better? Not really a word I would use. Yes, I have decided that suffering through work is in fact easier than dealing with my employer when I cannot work, due to the emotional and mental strain. I have decided this in the past though, more than once, and usually the pain wins because for some odd reason it does not like to be ignored. Still for a little bit I can just not think about how much it sucks, just sort of numb it out for a bit and so while I may not be better in any sense, I do at least appear more functional. And functional is what most people classify as good enough anyway. Although, I do rather dislike it when mention it because it seems to minimize the strain I am under by trying to do what is required of me. Sort of like the battle does not matter, as long as I am present and accounted for. Especially since I know how difficult it is to maintain. And of course the knowledge, but not to be dwelled upon fact, that I have to maintain. I bought a T-shirt that says 'When work feels overwhelming, remember that you're going to die'... I take comfort in that.

Unfortunately, given I am at about twenty five migraines a month and the statistical impossibility of effectively treating each of those I am actually over medicating in order to get to work and actually to think through the pain. It used to be I would take a painkiller to just dull the edge of the pain so it would go from an 9 to a 7 and just get though it till I could get home and aim to sleep it off. When in fact by not treating it aggressively enough seems to ensure it will endure longer, due to being constantly afflicted with light and having to move. So maybe 'barely able' to function is not good enough when treating pain. With my new policy of never calling in sick, except once every two months as to not rile up the boss, well, takes a bit more to manage the pain, because the pain is more intense and enduring. So maybe better just means more drugged up. Sort of better I guess. I discovered that an all out screaming intense acute migraine like I had today can be significantly dampened by a tramacet in the morning, a maxalt in the afternoon and a T3 for the evening... not eliminated, but definitely dampened. Still all the hours in-between rather sucked. These hormonal migraine weeks are all about trying to dampen the pain because the migraine is not going anywhere until it is damn well ready. I have to argue with myself when deciding how to treat every migraine. Like being stoic about a certain level of pain is some sort of success when in fact I am just making it that much harder to get through the day. Unfortunately, with the way doctors view chronic pain you can't always treat it effectively enough especially when that treatment can be taken away on a moments notice, so being stoic to moderate to severe pain comes in handy. Better than having well managed pain... and then suddenly not. Its like a pain free day... I am sure they exist, or at least the concept is somewhat plausible. So you have one blissfully pain free day. You can move freely. Prance around in the sunshine. Think clearly. All the good stuff and maybe some cotton candy too. Then Bam next day untreated acute pain. It is the difference that you will feel in that moment. Whereas  dealing with moderate pain all the time and then jumping to acute pain, is just tweaking your mentality to that survival mode of 'just get through it and it will all be better, even if past experience completely contradicts this fact'. This is why I think I spoiled myself last year. By thinking that when I was in severe pain I should not have to go to work. That I should take care of myself first. That my health means more than my job. All those lies. And it was awesome to be able to suffer in peace and quiet and darkness. You really cannot ignore the awesomeness of being able to just Be when in that much pain. But what was not awesome was dealing with the fallout at work, the guilt and the level of pain I have to endure daily. For me there will always be pain, 90% of the time some sort of migraine pain and even if I manage to get a day off from that there is always that baseline FMS pain. Moderate pain at work is worse than severe pain at home, because your constantly afflicted with stimulus that cannot be ignored. So by letting myself believe I could call in sick if I needed to made me call in sick more because, damn, it sure helped with the pain. Not calling in sick at all never gives me that break to remember how much better it is. I don't know. That does not sound right, but it's true.

You can't dwell on it though. Got to find ways to distract yourself from the pain and from the reality of it all. Logic is in fact your worst enemy. Because when you take emotion out of the equation and just look at the facts then you will realize your existence literally adversely affects everyone around you from co-workers, employers, family and loved ones and of course yourself. It is all the 'meaning' bit we ascribe to our existence to make it all worth while. Something worth living for. Some 'reason'. Fundamentally chronic pain gets to the point of 'how do I get through this day, this hour, this minute'. Nothing more than that. Mere survival for survival sake... or worse, survival to spare the feelings of others. What meaning is there to that? Just enduring all that pain. You don't get a prize for it that's for sure. Maybe in the end we get someone to write on our tombstone 'finally'. And working full-time makes the pain so much harder to tolerate and treat, but I seem to think that my suffering does not enter the equation since my working is what makes things easier for other people and less emotionally traumatic for me. So I guess I can feel useful. Is that the meaning of the pain filled life... sure moving, light, sound, breathing is really painful but at least I was useful. Because maybe without work I would really struggle to find any reason for my existence. So getting out of bed and going to work pays the bills and ensures people will not be pissed off at my gimpiness is better that suffering less and being useless. One thing is for sure, I only allow myself to think about it to write about it here. I always over-think and if I indulge in that I tend to think that I really got the raw end of the deal somewhere along the line. I wish someone would just say 'deal or no deal?' and I could say 'no deal!' In fact, any moment where I am not in too much pain, or distracted by the fact I have to focus on getting through something or distracted by anything I can distract myself I really think myself into a funk. The one thing a migraine is good for is to put a stop to all that thinking biz, which then helps me cope with all the migraines, although I tend to lose years using this method.

Stress bites

I am under the usual work related stress.  Everybody has some, it is just with chronic illness you have a few others when it comes to work.  I reduced my work related stress by doing what people want me to do rather than what is good for me.  I have missed six days this year and believe me that is very impressive... however I get about twenty five migraines a month, some of them very acute, so looking at it from that angle it is damned near unbelievable.  It is more painful than it would be if I were not at work, the migraines last longer than they should and they are harder to treat.  And it is extremely draining.  I'm not sure how long I can keep it up but it pretty much has to be as good as it gets.  My boss actually said I was doing 'a good job' and that clearly my 'medication was helping'.  I wanted to say it is not that, because medication is no better than it was, I just realized no one gives a crap how much pain I am in as long as I do what they want me to.  I wanted to say I have been trying to miss as little as possible because if I miss more, it will be easier physically but she will make my life a living hell until I'd rather slit my wrists than go to work.  Because stress bites.  Normal work stress plus pain stress is bad enough without adding increasingly worse work stress about something you cannot possibly control but are made to feel guilty and responsible over and a boatload of emotional stress.  So causing myself more daily pain seems almost worth while since I am avoiding the hell I have been through a few times now with work.

Lately it is not work that is bothering me, or I should say work does, especially in those long bad pain months, but I have an added stressor that is making it such that my safe haven, my home, is no longer a place I can relax in.  You see I own my place with my common law spouse and brother.  My brother found himself a girlfriend, who is significantly younger than all of us and at that lifestage where she has no obligations, career ambitions or responsibilities.  I remember that age well, and enjoyed it, but don't want to live it again.  So this girl and my man really, really do not get along.  She has been living with us going on two months without paying rent, she is disrespectful to my family and in that endless party stage.  The conflict between her and my man is stressing me out.  She is stressing me out too.  My brother decided to buy a condo so we are buying him out, which is also stressful, trying to figure out how our budget will work with two rather than three.  This condo will not be built for about a year and a half.  We feel it is only right for the chick to start paying rent, as my brother already splits the bills and food in half.  Minimum we want her to pay if she is going to stay.  Even better is if while he is waiting for his condo to be built to go rent elsewhere, which Martin wants asap.  Like now.  And that is all stressing me out.  I agree, I love my brother and get along with him, but her for a year or more would be uncomfortable and stressful.  So I have to make sure he understands both those options and now before our refinance is complete.  But I have been kind of ignoring the both of them right now... it is just too annoying and stressful to think about it.  One way or another I just want it done as soon as possible, so when I come home I don't have to deal with whatever crap she pulls and my mans outrage.

And then there is the stress on realizing that once we have the place to ourselves that I cannot be on leave of work again, no matter how hellish it gets, no matter what... because we would not be able to afford it.  Makes me feel trapped really.

Migraine Awareness Week

Take a look at these stats for migraine from the Migraine Trust.

What I would like to do when someone asks me about my migraines is point out the disability factor involved so the one stat on that site that caught my eye is this "Over half (54%) of migraineurs experience one or more attacks per month, and 13% claim one or more attacks per week (Steiner et al, Cephalalgia, 2003)"  At one time, eons ago it seems, I used to get about three to five migraines a month and when treated with a triptan I had no problems managing them, although occassionally one blew me out of the water.  Still, I would not have said migraines disabled me in any way, because they were managed.  Now of that 13% some of us get more than fifteen migraines a month, entering that chronic migraine area... and when you conisder how many people get migraines that percentage seems a great deal larger... consider discrimination, loss of work hours, disability, lack of treatment.  Because once you hit that chronic stage your treatment becomes threefold: a) abortive, which can, but may not abort a migraine and can only be used three times a week, b) preventative(s) of which the aim is to decrease frequency or intensity of migraines but there are literally hundreds to try so find which one, or ones, that works is extremely difficult... and it seems when you hit that magical combo it never lasts for more than a few years, because migraines are tricky that way, and c) a rescue medication, which can be pain killers or anti-inflammatories which are to be used when the abortive fails or when you have already used the abortive for three times that week, but unfortunately doctors are reluctant to provide this option until the patient becomes desperate and they can, of course, take that away at any time leaving the patient flailing for options.

So one thing that fustrates me is that some people think I am unique in my misfortune.  They wonder why my migraines are so frequent, what makes them so frequent and so forth... to which I have no answer, although I suspect it was when my migraines were beginning to get worse, but I was on abosolutely no medication because at the time I was trying to get pregnant (Obviously I had no idea my other health issues made that impossible) and that brief time seemed to make the migraines last longer and compound... until I was at the ten a month point, at which it became obvious I needed a preventative.  A contributing factor of course was the fact I have Fibromyalgia, which is comorbid with migraines and seem to share similar triggers.  Then I chose to not continue my academic career and chose a job with shift work which made my migraines severely worse.  Never got better after that.  Slightly better sometimes.  But never below ten a month.  No matter what speculation I have for why they became chronic the fact is I simply do not know, but I do know I am not unique.  By viewing it as something so rare people do not see it as a disability when it gets really bad, they do not see the additional complications that arise with treating that many migraines.  They seem to think that once my apparently incompetant doctors 'discover' that reason that the chronic aspect can be eliminated.  Now most people sympathize with me if they know what a migraine feels like but that is definately not the case and most people still wonder as to why they ended up chronic and why I have had such troubles with treatment.  Some people assume my situation is unique and carry that thought forward to assume I am doing 'something', or not doing something ( like I have no tried every single thing anyone has ever mentioned to me just in case it might have some minor effect), that is directly causing my migraines to be chronic... like they cannot believe that sometimes that is just the case and that millions of other people are in the same boat.  If people saw it for the disability it is, and one that does not just vanish, there would not be so many issues with work places and treatments from doctors.

What to say?

It is really weird when faced with honest sympathy I both have no idea how to respond and it forces me to dwell on the reality of the situation.  It used to be when someone would mention how difficult it must be to have chronic migraines or ask how I can manage I would simply be very vague, sometimes make light about the difficulties of dealing with chronic pain or just brush off their concern with some comment like 'a fistful of drugs helps'.  Because I don't want other people to be uncomfortable.  Now though I just can't pull it off because I know how serious dealing with chronic pain is so to brush it off is directly lying and I don't lie well.  Not a skill I ever wanted to develop or promote.  I do make light of things very well but not one for bold lies.  So when I try to just do the 'you get used to it' bit I have difficulties keeping eye contact and I don't think I pull it off really.  You can tell I am uncomfortable talking about it.  Not talking about migraines in general.  I can really get into that sort of conversation.  Talking about triggers and medications and whatnot.  Telling people getting botox for any reason is not recommended if you like to make facial expressions.  But actually talking about the toll of all that pain on me personally makes me very uncomfortable.  I don't like emotional displays or emotional conversations but when it comes to chronic pain beneath the facade boils a boatload of emotional turmoil.  So I am a little more honest I would say.  I never say 'I'm fine' any more and just go with 'not bad'.  So I say it is difficult and try to suggest it is not as bad they might think... like not every migraine is acute, and sometimes I can abort them completely, and sometimes I can dampen the pain part of them but seriously, come on, they are practically daily and every single damned day is a new battle with different symptoms and different intensities.  We all know how damned draining it is. 

Sometimes I think people just would not want to realize how emotional I could become if I were bluntly honest about it all... and sometimes I think I just don't want to face the reality of it by being blunt about it all.  Because when I am blunt about it, usually when someone asks me when I am drunk, then it always makes me think clearly about the reality of it.  And I find the reality of it very difficult to face sometimes.  I get to thinking of how many years I have lost to pain, where the only defining feature of the last decade was pain, and then I think of the many more years to come that will be exactly the same way.  Then I think about the torture of working with these migraines because that is what everyone wants me to do and how inevitably I will fail every single on of them.  It makes me depressed you see, which is why I stopped doing a migraine journal.  And why when I read back through previous posts I am so glad my memory is so bad I don't remember some of those things.  All the realness makes me fearful of my future.  The only amount of realness I can take is handling one day at a time and never dwelling on the past of future.

I hope though that my defining moments of the next decade are not also pain.  But pain steals time.

Anyway facing the realness this particular time, when I was drunk, made me have a pity party when I got home.  I only allow myself one every year to get it out of my system.  This one began when my spouse was cranky about my bro's girl friend mooching off us with out paying.  And I said 'But neither do I.  I barely contribute at all.'  And it went down hill from there.  But in the end a good old pity party kinda makes me feel better the next day, like I got it out of my system.  Still this month has been brutal and I am getting emotional about it. There is always that aspect of guilt when it comes to chronic illness or chronic pain... this idea that you are failing loved ones in some way or are not functional enough. Those sorts of thoughts will always occur to us but it is far worse to exceed our limits, to make no compromises for our health and in the end make things substantially worse.

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...