Working with migraine: The Haze has lifted….

Working through a migraine_ Yeah, me too. No advice. Just me too. Help.

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 sheer 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 incompetent in handling it… she said I could not miss another day or I would suffer dire consequences, as a 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 limited 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 beneficial.  How struggling to hold a death grip on 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, inevitably end up in a place where suicide seems like a good idea, and I will be in a mindset 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 chronic 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 sensitive to light, and that damned hormonal trigger.  Here is a 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 difference 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 fluorescent 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 accommodation for invisible disabilities- we are invisible to insurance companies, to social assistance, 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, administration, 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 through 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.

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2 comments

  1. I've been reading your posts for a few months now. Not very long, but long enough for me to understand that your experiences with migraine are so very much like mine. I was in denial for many years about how sick I was. I kept thinking things will get better. The next med will work. The next doctor will get me back to at least a functioning level. Sadly, here I am 8 years later so sick (and sick of being sick) that I've agreed to let the neuro docs botox me in a week. Desperation.

    I would like to pass along some advice I was given that helped me tremendously. Admit you're too sick to work and file for disability. Since you have a job, your first step should be to file for short-term disability through your employer. You qualify. Chronic migraine qualifies. Go directly through HR. Do NOT tell your boss or your coworkers. HR cannot discuss your situation with your boss. (Read your employee handbook.)

    Your employer sounds less than sympathetic, so you may need to eventually hire a lawyer. Going on short-term disability through your employer will allow you to take the time you need to focus exclusively on self-care. It will reduce your stress (which, as you know, keeps the migraine going). It will also allow you to have some money coming in (not your full salary, I know, but something is better than nothing). This permits you to at least pay your bills and retain your health insurance. As you get toward the end of short-term disability, you may need to file for long-term disability with your company. Again, keep your lawyer close by and updated as to your situation. Once your long-term disability has run out, and if you're still too sick to function/work, you may need to file for Social Security Disability. Again, you'll need a lawyer to help you through this process. (I used a former 30-year employee of SS who now helps disabled people get disability benefits.) Yes, migraine that lasts for weeks on end (or months), qualifies you for SSI/SSDI. I know. I'm THAT disabled too. My only regret is that I didn't file sooner. I've been on disability since 2007 and I am making some progress in improving my health. For one thing, I'm not vomiting every day. BIG improvement!

    Also, I wonder, are you taking triptans AND an anti-depressant? If you are, you may be experiencing Seratonin toxicity which makes the migraines 100 times worse. I know, because I had this for 3 years. Fired the neuro and went to Dartmouth-Hitchcock Medical Center's neuro team which is a 2-hour drive each way, but well worth it.

    My thoughts and prayers are with you.

    Like

  2. Thanks you for that post. No I am not an anti-depressants, although I have been on the past as a preventative, they just do not seem to work well with me and in 2010 I was on cymbalta and tried to commit suicide, whether from the pain, or the pain and the cymbalta, either way that was the last of that.

    I have been on short term leaves with this employer I believe four times now… but each time it comes to long term leave I get shot down for whever reason and have to go back whether I am ready or not, sometimes right when I am on an new med and I have no idea if it will do a thing. It discourages me because I know how they look at chronic pain and I know how difficult they make it for us to get on long term and stay on it. But I also know there are lawyers who specialize in fibromyalgia, which I also have, and I thought maybe I should get one of them to help me since no one else is inclined to. It seems everyone else is fine if we just suffer and suffer and suffer until we cannot take it any more, but it is never their fault. They system sucks for us. I will definately consider this, because honestly I can't think of any options any more. I can't think of any replacement jobs either.

    Like

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