Chronic pain and Significant Others

Migraine and Spouses - Actually you can take this and apply this to all chronic illnesses.

"If you suffered Migraine before you were married as much as you do now, do you think your spouse would have stuck by your side?
One of the worst and best things a headache specialist/neurologist ever told me was something like this:
“Do you know how incredibly lucky you are that your husband has stuck by your side through all of this? Most marriages could never survive everything yours has withstood.”
It was the best because it reminded me how much my family loves me.
It was the worst because it reminded me that I have put my family through so much, that it becomes not a normal fact, but an astonishing fact that they are still with me. This thought makes me sick to my stomach." - migraine.com

How many times have we come accross accounts of spouses who have not been understanding and who have not stood by their spouse or significant other.  And, by the way, I should be using the term 'significant other' even if it is a mouthful because it is more broad and i for one have never been married but have been common law relationship for 14 years, but never could find a easy to use term 'common-law spouse' does not roll of the tongue... 'that guy I'm shacked up with' works well enough sometimes.  The point is that guy I'm living in sin with makes my life a great deal better by being in it.  I am insanely lucky to have him.  It is not only that he does not bring into the relationship those negativities we sometimes get like that we are 'lazy' or 'chronic complainers' or whatever.  It is that he does more than his share; he does all the cooking, he does all the food shopping.  Those sorts of things that mean a great deal in every day living.  Obviously I know it I am damn lucky he has stuck by my side all this time.  When he met me I was twenty, in universty on my way to becoming a philosophy professor... by the age of 22 I was diagnosed with fibromyalgia, which I did not let stop me until the migraines became chronic and it became quite apparent that it was not just my body with was crippled but my mind as well, so just holding a job was difficult enough.  It was a slippery slope.  I coped with the fibro pretty well up until my Masters, but the migraines became dibilitating and not... treated. (Ever tried to read Kant with a migraine?  I would not recommend it.  Whereas I was writing my thesis on a metaphysical paradox of time using transfinite mathmatics.  yeah.  not so fun with migraines.  It was a diffiuclt choice to not proceed with my phd but an obvious one)  Working full time was difficult because some jobs were impossible as I found out I could not do shift work at all.  Frankly, full time work is diffilct enough with poorly managed daily migraines. He tells me sometimes 'I got myself a smart one' and I say 'nope, you got yourself a crippled one'.  But he does not mind that I am gimpy and we laugh when I bump into walls and use the wrong words.  We laugh a lot, which is a good thing, because I need to laugh.  Weird that he thinks he is lucky to have me but I really think it is the other way around.  I mean honestly life would be easier for him without having to deal with a partner with a chronic illness.

So there is a lot of guilt that comes with being in a relationship knowing how things could have been if you were the picture of perfect health.  But honestly... life just ain't like that.  And if someone does not stick around for the rough bits, well, then they just are not in it for the long haul.  Because while my man may have stuck it through some rough bit in our twenties that most people do not deal with when they are younger and that shows the strength of a man quite frankly... fact is, life being as it is, he has not had perfect health himself either since then.  And I have not gone running for the hills.  He had kidney cancer which literally scared me to death, but we got through it.  He also has gastroparesis which is a chronic digestive system problem where he does not digest food properly which when untreated was extremely painful and is still a chronic condition that flares up.  So no one is perfect.

Granted the whole chronic pain thing limits my ability to do.... pretty much everything.  Sometimes I think my partner would be out there doing more if I were able to as well.  Because I'm a complete hermit.  I can barely work, so when I get home, I have no more energy left in me.  And I definately know one of the reasons I feel I need to work is because I feel like it would be too much of a burdan on him stress wise, financial wise, to have to support me because I am crippled by pain.  Guilt is a powerful thing.  So is love.

Eventually we wonder... why don't these treatments work?

Why Treatment Isn't Working Study - I had to post about this little article because honestly it does occur to us after awhile.  With all the medications out there, for those of us who have tried and tried and tried... why do we not find that successful combo?  What is it that is complicating the situation?  One thing the study brought up would be the most obvious... high frequency of attacks.  It is simply harder to treat them when they are that frequent and I think the brain just gets wired for all the activity frankly and hieghtened for the triggers, so high frequency is definetely an indication there will be problems with treatment.  Having migraine before the age of twenty years old is another sign and again that might just show how the brain becomes hard hired for it, expecially since it is still developing until 21.

Then of course the co-existing conditions... sleeping problems and such things as fibromyalgia.  That would be me on both counts there.  Yes, my migraines are extremely frequent, but I do not believe they would be if I did not already have FMS and the sleeping problems associated with that syndrome.  Sleep is a big issue for sure, and I get a lot less morning migraines now that I am on sleeping pills than I used to, which means less missed work since I am not waking up with acute migraines as often... I just work up to them in the afternoon.  Anyway, other conditions can complicate migraines in many ways.  For example, other than the sleep issues FMS causes a great deal of muscle pains (less with Lyrica) and with chronic migraines there is a great deal of neck pain... with the both I ended up with pain that spread to my shoulder and down my arm, restricting my ability to move it every time I had a migraine and when the migraine went away it was just extremely sore.  Took six months of physio to work that out.

It is good to know they are looking at the cases of where treatment is not working and trying to figure out the conditions why it is not.  One question that always annoys me to no end is when people ask me why my migraines are so frequent or why they are so difficult to treat.  As if it is abnormal.  It isn't abnormal, but it isn't common either.  Chronic migraines are more common than people think for certain and those that do get them chronically do not necessarily have the same issues with treatment.  With all the different forms of triptans and preventatives out there many people find effective treatments.  But there are plenty of reasons for treatments to fail as well and I happen to be one of the unlucky few at this time.  Just the way it is.

Acutely chronic

On the form my doc had to sign for my employer, because my employer like to be asshats sometimes, at the very top it has these boxes to check off whether the patient has a temporary, chronic or acute condition.  And my doc said well 'you have a chronic and an acute condition'.  That is precisely the point right there.  Because people, employer specifically, assume chronic means you will always have it, it will always be the same, therefore you must deal with it and should never miss work for it.  Which is wrong on so many levels.  That being said chronic conditions can be manageable, like my Fibromyalgia is.  My employer has never had me call in sick from FMS.  It is a chronic pain condition, it is an invisible disability, and yet, I never call in sick for it.  I had a flare up where I had troubles walking for a year and yet I came in every day, walking in a shuffling slow pace, but there without complaint.  There was a year I slept with wrist braces on both my wrists and wore one to work daily from a flare up there, again no complaints from me, never called in sick.  It is chronic condition, it can cause flare ups that are painful and can effect how I work and movement.  In my case, the pain of it is significantly reduced by Lyrica and the other symptoms managed in other ways.

  Chronic migraines are a little different, because they can be manageable and they might not be.  If they are then they are still chronic, but they are being effectively treated such that the person is not missing much work, just the occasional untreatable migraine.  Still means they are getting over fifteen migraines a month, it just mean with their medications and treatment plan they have been able to reduce the intensity of those migraines or abort them when they come, or shorten the duration of them.  That was me at my best and I still missed more work than the average employee, but it was all right because I was within policy guidelines and was not harassed about it.  Plus because the migraines were managed I felt so much better, I had achieved that blessed balance.  That was a long time ago though and it did not last long.

Acute expresses the fact that yes, I have chronic migraines, but they are not being treated effectively at all, therefore there the pain level is extreme, daily, which causes a great deal more absences.  Since I am coming into work with migraines, untreated, or partially treated and working the best I can, causing that migraine to linger to the next day, where I repeat, and by the third day I am drain emotionally, physically and mentally and tend to then miss a day... or make it though till day five.  Acute means I fight to get to work every day and fight the pain every day and when I lose the battle and call in sick it is usually when I'm on the third day of a status migraine where by then nothing will work and there is nothing more I can take.  The numbers of absences don't look good at all, about two days a month on average, but from my perceptive that was really, really hard.

So yeah, I need to get rid of the acute part.  Just lower the frequency and intensity down enough that I can begin to find a way to manage them again.

Topamax aren't you a fun one?

I am still tapering up on my dosage.  At 50 mg now and on to 75 mg for a month then 100mg for a month.  I will be keep a detailed migraine diary so I know whether it is working or it is just wishful thinking on my part.

That being said so far the side effects are interesting.  The tingling is weird, sort of spontaneous tingling in random places.  It concerns me only because of course the tingling, then numbness of the permanent nerve damage I got from the status migraine, makes me worry that I might happen again.  I also get the case of the stupids a bit but not so bad, not as bad as I get with a migraine... hell, today's migraine made me write 3 instead of S all day and J instead of F and then just garbled some words right up.  So forgetting what I was saying or doing for a few minutes... minor.  The worst has been the fatigue and sleepiness.  I have been just so insanely tired all day long.  I don't get any better quality of sleep at night, but all day long I have to fight to keep my eyes open.  I hope that wears off as I get used to it.  I tried spreading them out a bit to limit this because I was finding in the morning I was groggy as hell with horrible after-images following things and sluggishness and clumsy falling into walls and such.  So I take one in the evening and one at bed.  So far does not make a difference, when I spread my Lyrica through the day it helped a great deal with those side effects.  I'll have to wait and see once I am at the 100mg for a few months, once my body gets used to the full dose for awhile.

The Haze has lifted....

I had a profound realization, like the puzzle pieces just snapped together, all because I have had just, just enough a decrease in pain to actually be able to think clearly about the reality of my fate.  I know the facts, and have always known the facts, but knowing the facts and being able to think clearly about them is something entirely different.  Lets put this in perspective by giving a flashback to 2010...

2010... I was in survival mode.  In constant pain.  Migraines every day.  Just like the year before, just like the year after.  I was getting a lot of pressure from my employer about my absences from work due to my migraines.  Treatment was just non effective.  My neuro appointment was in the distant future.  I could not have another leave of absence, or at least I could, but if I did, I knew I would be demoted and my workplace would likely become more hostile to me and I could not endure that.  I was desperate to power through to my next neuro appointment hoping for... something.  (damn, that is like deja vu all over again, because it happens over and over, but I forget over and over).  I was not sleeping very well.  I was emotionally on edge from the lack of sleep, from the pain, from the shear desperation of it all and certainly from the additional stress added by my employer and by the special way she made me feel guilty for being sick.  Now, being a crappy employee sucks for her, sucks for me, makes for a sucky situation.  Sucks more when she is incometant in handling it... she said I could not miss another day or I would suffer dire consequences, as demotion and other veiled threats.  You know, the sort of push, push, push you give somone like they are a lazy ass kid so they smarten up and become a model employee... except I wasn't a lazy ass kid, I was a severely stressed, emotionally strained, sleep deprived, in extreme pain person with self destructive thoughts praying for a heart attack and pushing me into a corner when I knew I could not get accomadation (as there was no accamadation for my 'disability') and I could not get long term leave (cause I am not 'sick enough' or insane enough or whatever)... well, not a good idea.  I had a status migraine, I was extremely emotional, the thought of suffering like that for another few decades seemed plain idiotic and I did not want to call in sick and suffer the 'consequences' nor could I manage to go to work in that level of pain... so I chose option 'B'.  You cannot expect someone to make rational choices in that much pain, in that sort of situation, with limitated resources and optioned when they are in a haze.  Survival mode is very hazy thinking, it is all blurry... years go by and I remember very little, but I know I have been in this very same place over and over again (because I blog actually).  It is reactive.  There is no way out of the situation, just getting through the moment.

Present-  And, much of the same really.  I had a very interesting conversation with a customer today that actually made me realize how survival mode is not benificial.  How struggling to hold a death grip to my career, to get through one hellishly painful day at a time may never work for me.  It may be that all I will achieve is increase my suffering and, eventually, inevitablly end up in a place where suicide seems like a good idea, and I will be in a mind set where I will not be able to think clearly about that... and it only takes a few moments to make that mistake.  So here is the thing with this young woman, she also suffers from chonic migraines, which is no shocker, unlike what some people seem to think it is not a rare condition only I suffer from because I do everything wrong.  Her triggers are very similar to mine; lack of sleep, lack of food, she is very sensative to light, and that damned hormonal trigger.  Here is the major difference, her migraines are managed.  They may be chronic, but they are not daily and when she gets them she treats them effectively.  What is the differece I wondered?  The main difference?  She takes a triptan finds a dark, cool room and takes a nap to sleep it off.  Me?  I take a triptan, sit under flourecent lights, stare at a computer screen and try to focus on four things at once.  Her migraine goes away, problem solved.  Mine, might be reduced slightly and come back full blast a few hours later, might not go away at all, or once in a blue moon is aborted (usually on a weekend when I can take it, go into a dark room and take a nap).  As I have always said taking a triptan and being exposed to the same damned triggers, pretty much nullifies the triptan.  In other words, I think my treatments would work if I could take them properly.  Every time I have been on a leave of absence my migraines have been significantly reduced and managed.  Working full time causes the treatment to fail because I cannot treat them properly, if I cannot treat an acute migraine when it hits.... then it does not go away, it continues for days and becomes a status migraines, and triggers another and another and they become daily.

What this tells me is that my job is increasing my suffering.  That I will never have well managed migraines working a full time job that is not flexible in hours like that and full time.  And that if I continue to force myself into trying to work that sort of job it will kill me. 

Problem is there is no accomadation for invisible disabilities- we are invisble to insurance companies, to social assitence, to everyone.  It is all up to us to survive.  Which means there are no programs to help us find jobs.

Problem is I can't think of any job with my skills in lending, investments, admistrations, writing that would be flex time.  Some sort of ideal job that has office time and work at home time, or work from home, or flexible hours.  My mind is drawing a blank.  Somehow, while I struggle though the job I have I am going to have to polish up the resume and brainstorm some ideas.  Because I don't want to be going deja vu a year from now ranting about how my employer is harassing me again and how horrible I feel.  I want an out so bad. 

Can't escape the Monster

What I hate about hormonal migraines is that they are impossible to treat, and I think one reason most of my preventative protocols seem to be ineffective is that the stats are skewed for a week and a half out of every month... minimum.  And if that month happens to have more triggers then that span of time is stretched out.  This hormonal trigger cycle started from my last post... that abrupt migraine last week at 4am on Wednesday and has not stopped kicking yet.  It is a nasty one for sure and I have been trying to just roll with the punches but with getting used to this new med concoction it has been tricky.  I have been a bit drugged up in the mornings... with a lot of visual echoes going on, you know where you get all those trailers after everything?  Trippy.  And tripping, into everything.  And the pain is seriously compramising my cool.  The skin on my head is so damned painful right now.  And breathing hurts.  And air touching my skin hurts.  And being awake hurts.  You get the point.

As an extra bonus work has been slow revenue wise, if not work load wise, and of course that comes down on us so we got all chewed out.  We get the privillege of working an extra two hours tommorow for sales.  Which no one wants to do, but I loath to do.  I think my boss must think I have a life when I leave work or something, when in fact I am crippled by pain.  She must think that if she thinks working an extra two hours is easy for me.  I can barely get up as it is, barely get through the day and she is asking I force myself to endure two more hours of pain and take away two more hours of recovery for sales.  'yay go team'.  Expecially on a killer migraine week.  Talk about my fricken bad luck that this crap always falls on bad migraine week.  Damn it to hell.  It is going to be a torment, on top of the torment that is already there.  Because, of course, I already tried to kill the Monster with triptans and failed so I am in status migraine mode which means migraine for bed time, migraine for breakfast.  So two more hours of migraine fun at work is hell.  The sort of hell people just don't get.  So instead of taking an hour and a half nap when I get home to take the edge off the pain, like I have for the last couple of days, tommorrow I get to just ride the high of pain all night long!  Joyness. 

Strange how some people can acknowledge I have a medical condition, but not think I am disabled by it in any way, not think my ability to function is significantly compramised... in essence not think it is a disability at all.  Stupid invisible disabilties.  It must be because we 'don't look sick' or because we can moderately function under significant amounts of pain that people assume either we are fine and dandy or that because we can tolerate it one day we must be able to endure and suffer it every day.  A stupid assumption to make by the way.  First of all it is hardly our fault we are forced to endure that level of pain every day, eventually you learn to function on a basic level with a sort of 'facade', because we are not given the option.  That does not mean the pain is not there and it certainly does not mean when the pain increases beyond even that level we can cope with it, or that other symptoms of our disease don't also cause signifacnt problems.   And I guess that has always been the boss lady's attitude since she has blamed me for my absences, saying I was letting down myself, my coworkers, my customers, my employer and probably society as a whole by having the audacity of being sick.  How dare I not have the pain tolerace to endure an acute migraines and function perfectly?  Shame on me.  Pity I blamed myself as well.  Point is, things got ugly in the past and it was upsetting and I put it behind me because I don't like to dwell on ugly upsetting things.  But, for the record, they have done and said some pretty nasty stupid ass things.  I vented on here many a time and occasionally would read back and get pissed off all over again because I would remember how many times they jerked me around with all their bullshit.  It is just a corporate game to them.  How to adhere to policy, in the most basic of senses, or not at all and get away with it, so that they can pretend they are doing something so that if my productivity does not improve they have reasons to lay me off, make my life a living hell, demote me or fire me or encourage me to quit or... and this one almost worked, put the pressure and guilt on me until I feel so useless that I'll just kill myself and solve everyone's problem for them.  Just fun and games.  She already told me they don't have accomadations for someone like me, that they don't consider my condition to be a disability... pretty much that disability by policy standards is so limited it is defined as only things that involve conditions that can be fixed by a new chair or keyboard, which they would be more than willing to provide.  Which by the way, according to policy is bullshit, because I looked it up and such things as FMS and migraines are actually specifically listed.  Honestly.  These people ought to actually read their own policy before they spit it out at me.  Every time they tell me something I go look it up to find out it is the exact opposite.  Anyway, I would not even be talking about this crap again if the bosslady had not brought it up herself which just stirred all my emotions up... being as it is that time of the month, I am in a boat load of pain and those new meds are just messing me up.  So she had a letter with all my missed days last year and this year... last year being after I returned from the leave of absence after I tried to kill myself because I did not want to call in sick for work.  Yeah.  And then she gave me this form I need to get filled out by my doctor within 10 days.  She said it is from HR about my ansences and ways to help 'accomadate me' but she already told me there was no accomadation to be made, so I think this is just one of those 'steps', those bullshit corporate policy cover your ass steps that has nothing to do with helping me, because I damn well know at this point there is no helping me not from any angle I have seen.

I don't want to think about that crap.  Or the stress.  Or the guilt.  I will get the damn form filled out.  And I will do whatever they damn well want me to do.  Hell, she and the area manager and my doctor and the insurance company and my neurologist can all get together and have themselves a little chitchat and decide to do what they think is best for me because obviously it has nothing to do with me.  And while they are all busy doing that I am going to think long and hard about why I think it is so imporant I need a career.  Why can't I just get a low stress job?  Why am I doing this to myself when I am physically incapable of maintaining it and by trying I am just asking for this negative fallback?  Stupid is as stupid does.  And it was stupid of me to think all those years ago that I could cope with chronic pain and still have a career I could enjoy.  I should just take what I can get.

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...