Well, it's a long way off from Invisible Illness Week in September, but seeing as how I just found out about it, I'm sharing about it now.
It's a week for others who have an illness that others don't see to get mutual support and have a sense of community and not having to wonder if the answer to the question, "How are you?" is supposed to be the easy, "Fine, thanks and you?" or the real, "Feel like crap today. The illness is acting up and I have to accept that I just have to make it through this bit of time to get out on the other side." or the sometimes even more intense, "Shut up! Your whispers are so loud they are making the ax cleaving my brain dig even deeper, so please just be quiet!"
Only that last one is not the best to maintain good relationships, even though it is why I grit my teeth sometimes. I do sometimes tell Casper, my dog, "Be quiet! Just be quiet for a minute! Please!" Karen realizes then, before I do most of the time, that a migraine is going on because I'm usually long suffering and very patient with Casper. He just responds by trying to lick me and kiss me. Dogs are love. Well, at least Casper is.
Nights like right now I know I'm in for a migraine when I slow down enough and the insomnia stops. It's not even just being tired and wanting to sleep, it's a total absence of the sleeping thoughts and feelings kicking in. It is almost 4AM, and I am finally starting to get a migraine, like I expected. Lack of sleep is a trigger. Florescent lights are a trigger. Going shopping for a bit, driving home in the rain with bright headlights coming at me from oncoming traffic and from behind with reflections off the night vision mode for the rear view mirror, all of that is a trigger one each by itself, but together... yeah, I don't stand a chance of no migraine tonight/this morning.
Anyways, this post is supposed to be about what I choose to do, in spite of my illness, or along side of it as it is always a constant frienemy. I do my best to choose to accept the pain and stuff when I can't control it and hope that the medicines work. If they work.
I choose to go shopping anyways. Yes, I wear a dark hat and sunglasses even on dark and stormy nights, making the shop staff think I might be a burgler, but I do what I have to have less of an impact from the environment on my system.
I choose to create. I went to the store and got yarn for a gift for my dad and a second gift for my mom. I also picked up a journal I've had my eye on for months. It's been months because the first store didn't sell them anymore and hadn't for a while, longer than a couple of weeks.
I choose to pray for folks when I can't do anything else. I choose to use the mantra, "Pain is just a mental event." when the prayers are too hard to do with the pain in the cranium. I choose to live and be messy and be myself and take care of things as things happen and am learning to be much more decisive than I used to be.
I choose to have fun! That's been my mantra since childhood. If it ain't fun, why in Sam Houston would any one do it? Whatever it happens to be.
I choose to love strong. I choose to drink water mostly, but when needed vodka or rum don't go astray. Beer is too yeasty for me. Oh that's another thing. Somehow, I am supposed to go gluten free to see if that elimination diet does anything for my migraines. Then, I'll have to decide if there is an effect, whether to suffer the effect and enjoy bread and pasta and couscous and did I say bread? and muddle through another migraine.
I'm getting used to them. That doesn't mean that I have to like them, or understand them all the time. I can't. Even my neurologist doesn't understand migraines and why sometimes there's a slow burn to build up to the pain and others it's all I can do to get to the bathroom before my stomach revolts from the sudden intense onslaught of pain and associated nausea.
I choose to ask God to use my suffering to bring peace to others. I guess this is what was meant by lifting up your cares and worries to God when I was younger. I never really understood how you could give something to God, one because all is his to begin with, and two because how do you give someone your pain? How do you let go of your anguish? How do you let go of your brokenness and leave it at the foot of his cross? How do you let the Great Comforter comfort you? How? Why?
That's one question I will never know the answer to. Why did this happen. I had none of the markers for the bacterial meningitis that almost killed me and left me with migraines. Compared to my friend who has blood cancer, at least mine is just something to suffer through and not die over, not unless I get bacterial meningitis again. If I do the ventricles in my brain may get backed up with cerebral spinal fluid as the meninges that filter the fluid into the outer layer of the brain and the spinal cord will be even more scarred and filled with debris. It is like I have arthritis not only of the joints but of the meninges too. :-) A little gallow's humor there if you don't mind.
Anyways, it is now after 4AM and this is getting just a teensy bit long, so I'll hush for now. I need to find an image that does this post good. I know just the one too.
Image is from: http://www.bioidenticalhormonemd.com/assets/images/img_brain-electrical-activity-mapping-beam_1.jpg
I chose this image because it looks like the electrical storm that the migraines sometimes feel like in my brain. I know that the meninges isn't really in the brain, but on the outside of it, but that's the easy to explain the geography.