June is Migraine Disease Awareness Month. And you know, I am just going to discuss my journey for this post. Because it isn’t easy living with chronic migraine with aura and persistent migraine auras and vertigo. And yeah, that is a bit of a list and that is because migraines can get rather complex as time goes on. And they have.
In the beginning
My first migraine wasn’t until I was 20. Unlike my other medical condititions, it was pretty easy to diagnose. At the time I had a very typical migraine aura, very typical intense pain, light and sound sensitivity, and nausea. I was put on a triptan. I got around 6-10 a month when you could menstrual-related migraines. And the stayed relatively consistent up until I stopped my education at the Master level due to the failure of preventatives helping me and completely untreated fibromyalgia. I entered the workforce. And then it was all downhill from there.
Yes, work no matter what I did, boosted me over the 15 migraines a month. Hell, the more I worked and pushed through the pain… the worse it got until they were every single damn day with no break. Ever. I worked in a hostile work environment due to my employer. The ultimatums, the guilt trips, the discrimination, demotion, ultimatums… all didn’t force me to work through the pain better. No, it made me hopeless and depressed and eventually suicidal. I had an attempt. Nothing changed. Depression got significantly worse. I went on long-term and things were decent for a bit. A relief from being forced to function like that. But they booted me off for some bullshit reason. Went back to work. Tried to kill myself again. Went on leave again and then back again.
This isn’t a fun story. This is a story of unsuccessful treatment, utter despair and torture. That is the life I had. And the fact I made it out alive is just… luck. Happenchance. Otherwise, I would be an all too common statistic that doctors would soon forget about. No one else would have forgotten though. But my employer would have moved on that day. And my doc would have shrugged and just continued on being the disinterested dick he was.
So no happy endings in that story. Except I changed doctors. I went to the pain clinic. I got therapy and medication for the depression. I got painkillers. I got treatment. I went down to part-time. And I sort of got by in a half-assed sort of pretending to function sort of blur of an existence. Better, but not really. Not really because the migraines do not wait for days off, do they now? Nope, they do not. Sometimes I vomited more than 20 times at work… or worse, the other end of the body. And thinking through pain… is not a thing a person can do. So presenteeism… yes. Absenteeism… yep. And I muddled along. Until the vertigo which always came and went and came and went… came and never went.
So now on disability and long-term. I cannot drive. In fact, with this dizziness and vertigo I cannot do much of Anything at All for more than a little bit without rest. But I do not have to force myself to function with high pain… so there is that bonus. Actually being able to do things would be Better, and I certainly aim for Better, but apparently, it is not on the agenda at the moment.
I am going to try a new treatment called Aimovig. When I can afford it, which is not now.
And this is the thing
I don’t tell you this wee blurb of my life to be a downer, man. Although it may sound like that. I tell you this because This is Not my Story… it is millions of people with chronic migraines story. If not change up the details a little. In the end, most of us are disabled and poor and struggling to pay bills. And when people tell us to try alternative treatments and vitamins and supplements we wonder with What money can we do that? When we are living below a living wage?
It is a bad story, not a bad life
So we roll the genetic dice and we got a raw deal. Some like me, load of up on comorbids which just make that much more of a bad roll. It is a suck story, man. But it isn’t Necessarily a bad life. A poor life, yeppers. And that pain thing sure does get in the way of thinging. All thinging. I am going off a 4-day migraine. If that doesn’t sound fun, that is because it is definitely not fun. But we can still have a life. A mellow life full of sunglasses and not too much noise. And pain creams. And ice hats. And supplements assuming we can afford them. And medications, assuming we can afford them.
But we know that our emotional, mental, and physical wellbeing are equally important. So we know we have to get out and about sometimes. We know we have to fill the void of work with passions we are capable of doing when we are capable of doing them. I treated my mental illness and that was a must for any quality of life. So I am not a miserable person. I laugh a lot. I joke a lot. And I make the best of a bad roll. We all do in any way that we can. Because sometimes we are laid out and cannot function in the least bit. And sometimes those days are more than any functionality we gain on other days. And even that sounds sucky. I guess. I don’t know any different really. This is what it is. So I live the life I can with it. We all do.
But some of us we lose along the way. They do not make it through the other side of that deep, dark despair that comes with unmanaged pain. Like I almost didn’t. And so when someone say ‘I have chronic migraines’ remember they can kill. By suicide, stroke, heart attack. Understand that person is fighting by inches through the day for some semblance of a life.
I wrote this about migraine and suicidal thoughts:
I wrote this about chronic migraines:
And maybe migraine poetry and migraine art explain it better than I ever could. Because I don’t think people can comprehend that level of pain… and trying to function with it. How it crushes you. Smothers you. And then breaks you. And it takes years and years to recover from that in order to even find yourself again. And when you do? The pain is still there. Sill has to be survived and coped with and lived with.
Aimovig for migraine
Let’s talk chronic migraine
Migraine matters: Some really, real questions I can answer