What would you do if you were on the floor, writhing in excoriating pain from a cluster headache attack; you’re praying will only last 20 minutes instead of 30 then suddenly the sound of your 10 year old son screaming out in pain while throwing up from his own migraines are echoing across the hall????
THIS IS what really happened this afternoon.
THIS HAS BEEN my life since February……well the part about sharing a genetic disorder with my son is.
I am a migraineur of 27 years who developed chronic migraines two years ago, was diagnosed with cluster headaches less than a year ago and has a son that was just diagnosed with abdominal and cluster migraines a few months ago.
OF COURSE when people poke fun of our medical condition saying to “Just take some Excedrin, put on some sunglasses, toughen up and just get on with life” I take full offense to that.
If THESE people telling us to take Excedrin, Ibuprofen even Tylenol knew that it is infamous for causing rebound headaches maybe they wouldn’t be quick to comment such gibberish.
Putting on sunglasses can only do so much. The way any person with headache disorders would see it is that advice would be like telling someone to put a Band-Aid over a deep wound that obviously needs stitches. Or my favorite comparison is telling someone who has a massive hangover to get out of bed, put on sunglasses and that eating a HUGE meal will make you feel ALL BETTER. YEAH, that isn’t going to cut it when your stomach churns at the aroma of eggs hitting your nostrils.
The toughen up theory really angers me the most.
I had three kids (one with the help of drugs and the other two were without) so I know a thing or two about pain. When I would rather have my arm cut off or go through child labor instead of dealing with the cluster headaches I get THEN the person telling me to toughen up better run because I am liable to throw an object at their head. Sure they won’t feel the same amount of pain as me, but it sure would make me feel like the person didn’t get the last say in how I handle my health condition.
As for getting on with my life I am trying to. I wake up every morning THANKFUL for another day of life. Whether or not my body decides to cooperate is altogether a different story. There are times my motor skills or balance are off. When that happens I carefully move around the house. I basically do the same things I allow my 9 year old to do. I won’t touch the oven or use sharp objects without supervision. I definitely won’t go up or down stairs unless someone can make sure I can do it without falling. As for driving, I am still on restriction. I can drive ONLY if I feel fine which translates to head pain or dizziness means NO driving!
I wish people would just get my son and I were born with these genetic disorders that currently have no cure. YES we have AMAZING Neurologist that are trying their best to help us, but that doesn’t matter if your body decides to control the whole situation. All we can do is try one treatment after another in hopes we’ll feel well enough to function as normal as possible.
So that is my rant for today.
Anyone who feels I am overacting PLEASE leave a comment…….I DARE YOU 🙂