What’s your biggest Migraine related fear? How do you cope with it?
That the pain will never end and it will kill me. Or more likely it will cause me to kill myself, but maybe it will be a heart attack, or a stroke or a seizure. But the never-ending pain scares me because that makes me fear I will get to that mental place where I will want to kill myself again. A very tangible and real fear given my history.
Coping with it is difficult because every day I cope with all this pain through work and unsympathetic doctors and surviving. How I don’t know. I manage. Then comes along a five to seven-day migraine hell where the pain does not stop, I can’t sleep and I’m desperate, At those times I wish I didn’t have to work, but I know my doctor, neurologist, and insurance companies have given me no options. I wish I had some options, but I don’t know how to achieve them. I’m desperate for relief but know the ER will not provide it. I don’t know how I’m going to manage to function for the next few days at work let alone decades. That is were coping deteriorates and where your ability to reason and think clearly shut off.
That is why I’m afraid of it. The spiral and the slippery slope of despair. The fine line of suicidal ideation and intent. I fear unmanaged pain and the lack of the capacity to deal with it while trying to function in the world. And I have every right to fear that.
You know, you think you can survive in survival mode forever until you can’t. I know that now. I am very aware pain has a limit. And I have exceeded it. Knowing I almost didn’t survive that once, makes me fear I may not survive it in the future. With a sort of hopeless acceptance that nothing ever changes for the better.
I fear every time I on leave. Sometimes the insurance company does not pay for it. I fear every time I am demoted. I fear the possibility of permanent disability. All of these affect my income and increase my debt. All of them make it harder to pay my bills and obligations and that isn’t fair to my spouse.
So I fear pain. I fear me. I fear the future.
I think there will always be that taste of fear if we think about it. Which is why I try to live day to day. Fear corrupted the past. Fear stalks the future. Only in the present moment can I deal with the fears of the day… like how to get through it with the pain I am in.
I look back on this post and these fears. And I know they were very realistic fears given the difficulty in managing chronic migraine. The stress of working with unmanaged pain. And the resulting Major Depressive Disorder. I did end up on permanent disability and this does result in some serious financial insecurity… but you do end up in a better mental place to cope with the pain. So there is that. And all sorts of different coping strategies you can do when you are not in survival mode. I’m basically saying working full-time with chronic migraine that isn’t managed is pretty much impossible. I have no idea how to do it Without getting suicidally depressed. Maybe if the workplace was flexible or the work was from home. Or medication had Some impact. Or… or… but my workplace was not flexible. It was actually, initially horrific. I know a whole lot about what Not to do anyway.