Chronic Illness Can Can

I don’t like to dance.

Okay that’s a lie, I love to dance.

I’ve tried to learn how to dance for years, at least beyond the moves I learned from watching Missy Elliot videos, to pretty much no avail. Graceful is something people only called me when I fell on my ass. I had to come to the unfortunate conclusion that all I’ve got is my timing and that’s iffy at best.

Dealing with my chronic migraines has been a lot like accepting that I can’t dance. “At least you got your health” occasionally sounds like “well at least you know that one move.” Because the truth is I don’t even really have that one move and I don’t really have my health.

It’s been a daily struggle for more than 10 years. Although I’ve been afflicted by the disease since I was 9 years old and am now over 30, it’s only really been a major life altering problem since my brother graduated high school in 2008. (Not that this was a catalyst, but it’s a good marking point because it was just about that time that they got so much worse)

And actually calling them chronic is difficult, because the actual definition of chronic migraines is 15-17+ a month and I have full blown migraines maybe 6-10 times a month. To the rest of the world that seems like hell (and it is) but there are migrainers out there that haven’t had a day without a migraine in years- YEARS! And for that I count my blessings, for what they are. But this also means that doctors and other migraine patients don’t offer me the same amount of help as they would the chronic patients and that leaves me with doctors prescribing me pills I’ve taken before that I’ve had bad reactions to because “they might work this time”, people downplaying my pain because “it’s not that often” and the list goes on.

It all compounds together leaving me feeling disappointed, depressed and alone.

I’ve gotten some mental relief by participating in migraine facebook groups and forums, it allows me to converse with people who are afflicted in the same way that I am. Because as much as your partner or family can understand, unless they currently experience the exact same thing as you, it’s so much better when the person your talking to can respond from a place of actual understanding. Again, it’s fantastically validating for someone to say “Yes I too wake up in pain a couple times a week with no warning the night before”.

Never to say that mi esposo and mi familia aren’t wonderful listeners who don’t do everything in their power to help me stay healthy and feel better when I’m not, because they are and they do. Not all those who suffer from chronic illness have such wonderful back up and again, for that, I am thankful.

I think, really, the worst question I get asked is “What can you do about it?” Because my only real answer is “Nothing.” Because for all of the preventatives and all the backing out I’ve done over the years I have not gotten any healthier and there is a good possibility that this could get worse. It has in the past, there is no reason that it won’t in the future and I think this is the hardest thing for people to understand.

Chronic Illness is called chronic because it happens all the time and doesn’t go away; there is no cure for migraines.

I smoke weed, I take anti anxiety medication, I keep my stress low, I have a simple job with the best god damn coworkers and boss I could ever ask for and I eat better than I ever have; and nothing has changed. No amount of gluten free, organic, vitamin lifestyle  garbage is going to make me better. I’ve tried it, I’ve done it, it didn’t work.

And I know that people are just trying to help when they offer advice and I know that I tend to get short with people when they start their response with “Have you tried-” or “My *insert family member or friend* tried this and it helped them!” But you have to understand, I can only hear “Drink more water” before I want to start drowning all the well meaning people on the road to hell.

-Jess