The life

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My psychologist had said something to me that I think a lot about. That no matter what I will have pain, aside from the fact a cure could come tomorrow or a decade from tomorrow… point being I have to deal with this pain and I have to find a way to have a life with it.

How is the question? With fibromyalgia I can see how this is done. Pacing, moderation and staying within your limits… and you can have a mellow, careful life in there.

Migraines, intractable every single day migraines, are not fibromyalgia. They do not respond to pacing or moderation and saying within your limits does not prevent them. Trigger management even doesn’t stop them because not all triggers are remotely controllable and some are stack able. Not to mention once you are daily and intractable it just seems you are stuck in the migraine cycle itself. What is triggering them? Existence? Life? Breathing?

It is a different sort of pain that doesn’t respond to the whole concept of pacing your activities. It just hits. And when it does you are functionally useless.

I have yet to figure out how to live with this. Have a life with it. I attempt things and it really doesn’t work out. The pain and then the assault on the senses make everything miserable. Just leaving the house amps the pain and sensory overload. Driving a car… makes it worse. So by the time you get anywhere, you want to leave already.

Medication, triptans, can be take 3 out of 7 days. But they usually only work for 2-4 hours before the migraine comes back. Yesterday we went out to friends. I took my triptan, which has about a 60% chance of working and it just dulled the pain… but I knew it would be dulled for 2-4 hours. So that was, well, okay-ish. Second problem was massive nausea. I took my double dose of zofran. And hoped it would kick in. It didn’t. We had dinner there and I could barely eat at all I was so sick to my stomach. I was really not feeling myself. Or I suppose I was feeling myself, because I always have a migraine. But I was uncomfortable socializing in pain and nauseated. But I tried. And when we left I felt like I failed because I felt so cruddy. But at least I faked it pretty good. Then migraine came back full speed ahead after, so there was a the least that. Triptan gave me chest pains again though.

Non-triptan days are quite horrific overall. I don’t want to do a thing. Today was of course non-tripan. And I was useless. Tomorrow is non-triptan and I was hoping to get some errands run, but leaving the house like that is torment. Last time I did that I hit a car in a parking lot. So there is That fact.

Where is this life supposed to fit in there? Everything is too loud, too bright and too filled with aggravating scents. My brain hates movement of any sort. All the other symptoms can make me dumb, confused, dizzy and just out of it.

My home is my safe haven. Where I can control my environment and do things in silence and darkness. The safe zone.

He said you’ll always be in pain so you might as well live your life. However, I will be in significantly more pain when I do things with the migraine. The pain gets outrageous fast. The best I think a person can do is take advantage of those brief triptan windows. And before the migraine hits… or I should say the prodrome, sometimes you can get things done in the prodrome but of course it does dumbify the brain.

The other side

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There isn’t an other side to the pain. You don’t come out the other side of this hell… there is just more hell there to meet you. But it is a tunnel and maybe someday there will be light at the end of it, we just never know.

But while in our hell tunnel… ย well ‘no one can chart that blue and lonely section of hell’ that we go through when we have depression with chronic pain, and we are having a hard time managing the suffering that comes with chronic pain. It is a long lonely road that makes it far more difficult to deal with the pain.

The pain itself is a burden that is difficult to tolerate and endure. Especially with daily intractable migraines. Every single day I think now This migraine is a beast. Then the next day That migraine is a monster of a beast. And I wonder how I can manage to do a damn thing when that heavy fatigue and brain dumbness hit me. And the assault on the senses makes me want to avoid the world. Is this the day I cannot stray from the bathroom for more than ten minutes? Or the day I am blinded my auras? The day I cannot eat? It is a day by day life of inches… crawling through the pain by inches. Get through. Repeat. Get through. Repeat.

Depression though is insidious. It sinks into that pain and it says a life like that? It isn’t worth living. Says you are a burden. A useless burden. It says a life of pain is a wasted, useless life. One not worth enduring. It tells you to lie down and don’t get up. To not strive. To dwell on that suffering and see how horrific it truly is. How mad it is to want to exist with it. Sometimes it lies. Sometimes it exaggerates. But it is the truths that really hit you hard. The ones you try to ignore because you need to survive the pain and not swell on it? Those truths. Depression makes you look at them. Stare at them. And realize how horrific they are.

No one said this was going to be easy. The pain. The suffering. This is not an easy person’s life. Depression stems from chronic pain. It is very dangerous. We need to treat it as such. Delicately work our way through it. Piece apart every thought. Worth through every lie and exaggeration. Acknowledge the truths, but know they are the truth of every single person with chronic pain. Hope that slowly it has less power over our thoughts. Try to distract ourselves when it is strong… when the pain is strong.

And maybe, someday, we will have more control over our suffering. Maybe not the pain. Maybe the pain will always be there, maybe not. But if it is, then at the least we can manage our suffering. One hopes and hopes.

So that out the other side… we have more than an existence… we have a life.

Wouldn’t that be nice? To strive for?