Migraines Are NOT Convenient

"How Convenient". I've probably heard that phrase a million times or more. My family notices when I miss dinner with the in-laws, going grocery shopping, making dinner or cleaning up the dishes, Church, picking the kids up from piano practice as I promised, and going to work just to name a few. But, how many times do they notice when I miss going to the movies, bowling, shooting hoops with "the boys", or watching football on TV?

You know and I know that migraines are not convenient. I can't pick and choose which events are spoiled by them. To others it may seem I control the strings, but in reality this monster is the puppeteer. My migraines determine the movement of my legs, arms, eye lids, right side and wrong side up, standing or laying down. It controls when I can eat, sleep, walk, talk, drive a car, clean the house, get dressed, and even engage in the things I love to do and with the people I love.

Everyone, other than a fellow migraine sufferer, seems to think that I can control my illness. Control when it allows me to participate and when it puts me in a choke hold. If someone does not suffer from a debilitating disease, then they have no possible idea of the limits I have on my life. No idea of how long it takes to recover from the blitzkrieg.  They just can't conceive the weight of the struggle to make it through a day.

Sometimes, I wish I could wear my pain like a sandwich board, to signal those around, that I have a disease that prevents me from participating. As if, the tears and drooping of my eye are not enough. Some might think that the fact I'm in bed with the blinds drawn and a pillow over my head might be enough. But no, those around me have seen that so many times that it has become the norm and doesn't really register with them. My friends and family have gone blind to the fact that I'm using every ounce of strength I have to keep from clenching up in a ball and screaming at the top of my lungs.

No, migraines are not convenient. Just because I cannot participate does not mean that I choose not to participate.

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Living With An Invisible Illness Is WORK

Living with an invisible illness like migraine is WORK. I believe that the fight myself and others have is as hard as any 'real' job in the world. In order to keep our sanity, balance, ability to get life done, and not fall overboard is a job. It's very difficult to make the people in my life understand that my invisible illness is real work every day. Even on the days that do not appear to be affected by migraine.

Too many of us know the frustration of having to prove our illness in some way to others with a minimal understanding. The angst of continually trying to explain the reasons why we are not able to complete, a typically simple task at this time, due to the monster storm that is brewing under the surface of our facade. This illness feels like a sinking ship, the deck slippery and going down fast. It's a fight just keeping our heads above water as we watch our lives going down in a swirling sea.

Unfortunately, the rest of the world cannot see the waves crashing over our heads or the water pulling at our feet. Our foothold on a slippery deck that wrenches at us everyday. Each day "our work" may be simply making it through the day. The sinking ship that is everyday life, and keeps us human seems impossible to right. But, we hold on to our life preservers; the loved ones at our side. And, keep trying to reach the rescue boat; which is the thought of a normal life. Don't give up, because we all can reach the warmth and safety of a rescue. Somehow, somewhere, there is a solution to our individual pain and we all need to keep searching to find our own safety. Keep the hope in your life.

 

The Beast Of Burden

I have been burdened with writing this article for nearly two weeks. It's not that I don't know what to say, but that I don't know how to say it. I finally just sat down at the keyboard and started typing. This is what I got.

The beast is migraines in my case, though it could be any number of chronic or invisible illnesses that are suffered by others. The beast has been with me nearly every day over the last few years. It is always lurking, waiting to strike. Sometimes without warning. It presents a burden in a couple of ways.

Migraine is a burden on every day life. Waking each day, with one eye closed tight, hoping the beast is asleep and will let my feet touch the floor. It rides my back even when it is not attacking me, and threatens to strike at any time. I can't make definite plans without allowing for the presence of the beast. My calendar is filled with "penciled in" events. Nothing written in ink. That would present a specific target for the monster. Sleeping, waking, eating, going out to shop or see a movie, going to church, even when I go to the restroom can be determined by the force the beast lays on me. The daily grind of living with this beast tests my strength on a daily basis. And it tests the strength of those I love.

The burden is on our loved ones and friends as well.. It scares others away. Friends who were close no longer call or visit. Family gets tired as they are sucked into the grind. They reach a point where they are overwhelmed by the beast as well. It becomes tiring for them. They may not be able to see the beast, but they definitely feel it's presence. Almost as much as I do. They begin to not make plans, or make their plans without me, leaving me feeling like an outsider who is lost and alone. So many times I have stayed in bed, nursing a migraine, in an empty house. Compassion gets harder to find as the one's around us have to deal with the monster in our lives.

Sometimes, I feel as though I am the beast that preys on my family. A beast of burden that weighs them down as much as my own beast does to me. There are times when their actions and their words reflect the burden that is placed upon them. I try to suffer my illness in silence and not involve my family, but there is just no way that I could live without them.

Do others have the same sense of being a burden? Do you have ways to fight back against the beast and gain your life back? Please share.

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Between

Seems I live a life (of or in) 'between'. I do live a life, only it seems to be in shorter spurts than that of others. A life in between migraines. Between pain and the dread of it returning. Between migraines and depression. Between sickness and health. Between, in bed and going back to bed.

This isn't a life that is just between me and my family. It is between me and my hobbies, my friends, my work. Between prescriptions, doctors visits, and clinics. Between enjoying time with family or friends and the inability to stand. And, I live between hopes. The hope of life without migraines, without living in a cave, without taking handfuls of medications, without wearing sunglasses day and night.

It is a life between us, the millions that suffer from migraine disease. It is because of the 'between' that I live my life, write this blog, share my story and share information that I find useful. But, let's not keep it between us. ;)

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Migraine: The Invisible Storm

Living with an invisible illness like migraine is WORK. I believe that the fight myself and others have, in order to keep our balance, get life done, and not fall overboard is probably as hard as any 'real' job in the world. I'm definitely trying to make the people in my life understand that my invisible illness is real work every day. 

Too many of us know the frustration of having to prove our illness in some way to others with a minimal understanding. The angst of continually trying to explain the reasons why we are not able to complete a typically simple task at this time, due to the monster storm that is brewing under the surface of our facade.

Unfortunately, the rest of the world cannot see the waves crashing over our heads or the water pulling at our feet. Our foothold on a slippery deck that wrenches at us everyday.  Trying to determine if "our work" is for the profit of regaining our lives or simply making it through the day.



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