Yesterday’s topic for Migraine Awareness was:
With Chronic Migraine, the odds are greater than 50 percent that Migraine will ruin our day. Do you, or someone you care about, have Chronic Migraine? Tell us how you keep going, against the odds.
Which I wanted to post about, but unfortunately my internet was down most of the day and I had to rest the remainder due to the severity of vertigo. Today’s topic, on the other hand, I did address in the post; Elle magazine and migraine, as it relates to the #migrainepose issue that has been going on in social media.
So let’s talk chronic migraine
I have had migraine for 21 years, and about 17 of those were chronic. More than 15 migraines a month. And then when I started working, out of university, I increased rapidly to daily migraines. I blame the sleep deprivation due to my pervasive insomnia with fibromyalgia. I never got enough sleep. And that is a massive trigger. However, once I was daily… it got stuck that way. No matter what I did. So most of that time I have been daily chronic migraine with aura, persistent migraine aura, and for the last 8 years also vestibular migraine.
Treatment of chronic migraine
For chronic migraine you can take 2 triptans a week, otherwise, there is a risk of rebound headaches. Obviously, for me, this leaves 5 untreated migraines. Which is why preventative medication which can reduce intensity and frequency of migraine is important. I, however, have been told I simply do not respond to medication. I have tried numerous preventatives, and combos, and sometimes more than once, to no avail. I am on my second trial of botox, round three, and not responding well. Chronic migraine is complex. It isn’t easily treated. It can take years to ever find something that slightly works. And some of us are still looking for that. Chronic migraine is very sensitive to the environment. We are often forced to function with the pain. What I have learned is that when exposed to light, noise, scents, and having to move and think through the pain… just makes it far more intense. Aggravates the pain immensely. So every day severity is high.
What the major problem with chronic migraine for me has been…
trying to sustain my career by pushing through the pain. Not only did this not work, but I developed severe depression. So I had to give up the career and work part-time. And even that has failed me. It has taken a significant part of my life battling to survive work. And by doing so, I had no acceptance of living with chronic pain. It was torture. And how can one accept that? Because you cannot exceed your limits day in and day out without the pain wearing you down mentally, emotionally, and physically. It is only within the last five years I have come to terms with what it is to live with chronic pain. An acceptance that I cannot control the pain, but I can endeavor to manage the suffering. An acceptance that I have limitations I cannot exceed and knowledge, and some wisdom, of the consequences of exceeding those limits on a daily basis. There are a lot of consequences, but some of them are life-threatening. Trying to establish a relationship with pain where ‘I’ survive it. A more gentle compassionate relationship to pain.
Life of inches
Chronic migraine is life-altering and the impact of it affects every single part of your life. You try to hold onto bits and pieces, but it falls apart again. You push the pain, and it shoves you to the ground. I can it a life of inches. Crawling, dragging, my body inch by inch, moment by moment to just crawl through the pay surviving the pain
And I had to learn to live with that impact. Understand that pain cannot be pushed around. And you can, gently, carefully, live in the pain gaps. And you must do a lot of self-care to manage the pain. But the price and consequences of trying to hold onto things I just couldn’t functionally manage have been brutal for me. I almost didn’t survive it, because I didn’t want to survive it.
We have to pace. We have to use self-care. We have to manage our meds. And we do many other things to help manage the suffering. I prefer meditation. And we have to survive any way we know how. We will endure