Migraine. One word. One simple word, but if you suffer from migraines it is the most painful word in your vocabulary. If you live with chronic migraines as I do, just the thought of saying that word makes you cringe and sends chills cascading down your spine. The thought of the nausea, vomiting, piercing pain from light and sound, the dizzy spells, fatigue, medication refills, and missing time with your family can bring tears to your eyes.
My migraines haven't been all that bad lately. It has been about 3 weeks since the last one hit. 3 weeks 1 migraine, that's heaven! It sometimes amazes me how after a migraine is over I can go for a week or two without ever thinking about that word. Without ever recalling that pain. But once the spots appear in my line of vision or I feel that tingle behind my right eye it sends me crashing to my knees praying that I am dreaming, that this is all just a big bad nightmare, but I know I am not! And before you know it the pain hits me like a ton of bricks and I am running for the nearest dark, quite place.
They have a word for people who suffer for migraines. Migraineur. I had never heard that word until today when I was in the midst of desperately searching for a way to stop the pain. It basically means a person who suffers from migraines. I never would have thought that there was a word for people who get migraines??? You can certainly tell that it wasn't invented by someone who actually suffers from migraines. If it was it would be a lot longer and have lots of very bad words crammed inside it.
I think every Migraineur has the the same thing in common; Fear of the unknown!
The fear of not knowing when the next one is going to hit.
If you are going to be able to make it to your friends baby shower on Sunday or your daughters graduation next Tuesday. Living with the fear that tomorrow could bring on the worse pain you have ever experienced is sometimes overwhelming. So I try, I try hard not to think about my migraines. To live in the moment because tomorrow I could be trapped in my closet for 8 hours unable to hold my baby or help my daughter with her homework.
So because of this FEAR I pack my calendar. I can get a lot of stuff done in one day. I can write a few blogs, spend an hour building block towers with John Paul, dance with Liam in the kitchen, spend time talking on the phone with my mom and best friend, volunteer to do lunch duty for my daughters class, do three amazing art projects with Annabelle and Judge, make dinner for a sick friend, take the kids to the park, visit with some people from our church, make dinner for my family, and spend quality time with my husband, all in one day. IF, it’s a "good day". But, if it’s a bad day, if the migraine kicks in at 2 AM and is at a level 7 by 6, I’m lucky if I even get one of those things done – let alone 2 or 3 of them. So, I do my best to cram. I try and get as much done everyday as possible, because you don't know if tomorrow will be a good day or a bad day. And once it hits....well that's where the next fear comes into play......
The fear of not knowing it you will make it through this one.
We all know we will survive but at the time of the migraine, when the pain is at its worse and you feel like you can't breath, you start to wonder if this could really kill you. If it is possible to die from this much pain. When you suffer from migraines sometimes all you can think about is making the pain go away, You feel helpless and hopeless. You feel like beating your head on the concrete until you are unconscious is the only way to get the pain to go away. And when the pain is at its worse you sometimes think that death is the only way to get it to stop and that is beyond depressing. You are helpless the pain has total control over you, and there is absolutely nothing you can do to stop it. You want to know when it will be over and that leads us into the next wonderful fear......
The fear of not knowing how long this one is going to last.
Fear of thinking that it is going to last FOREVER (OK ,maybe not forever, but thinking about the pain makes me little dramatic). The thought that it may not be gone when you wake up in 5 hours or even tomorrow is heartbreaking. Feeling that if the pain isn't gone in a few hours you just may DIE! Like giving birth; things are always easier when you can see the light at the end of the tunnel. With a migraine there is no light. There is never a light and that leads us to the next fear....
The fear of not knowing if it is really over.
This one is especially hard for me. I can't think about this fear to much. It makes me physically ill if I do. To think that not only have I suffered for 2 days and missed out on countless moments with my kids, but now I have to worry if this is just a small reprieve before it comes back ten times worse, or is it truly over for good this time. The thought that the migraine I just worked so hard to get rid of could come back by 6 am tomorrow if I don't take it easy, it makes me want to cry, kick, scream, and even vomit it seems so unfair. It makes it hard to agree to anything with anyone because once they have heard “Sorry I have to cancel because I had a migraine yesterday and I am trying to take it easy so it doesn't come back.” they may slowly back away which leads us to the next fear........
The fear of not knowing how people are going to react when they find out you get migraines.
I have found over the years there are 3 different kinds of people when it comes to dealing with someone else's migraine problems and each group reacts a different way:
These are the people who you tell and they genuinely feel bad for you and hate the fact you are suffering. These are usually close friends and family. Most of the time I try and only tell “the caring” people and even then I sometimes don't tell them. I guess it is because I hate the pity, it makes me feel weak and worthless, like a crippled person.
I sometimes feel when I tell people they look at me the way I see myself. Weak and worthless. I know they don't really think of me that way. Now how is that for irrational? I know they only say something because they care, but when I tell people, I feel like I am admitting defeat. I want to be stronger. I want to not be crippled by pain, but I am and that is so hard for me to admit. I have been strong all my life and for a migraine to take me out, well that is just plain depressing. “A migraine kicked my butt and I stayed on the floor in the closet for 10 hours today and missed out on another precious day of my kids lives.” It's really just pathetic.
2.The “Not so helpful advice folks”
Most of these people belong to group one also. These are the ones with the not so good advice that make recommendations that are impossible. I know they have the best of intentions but saying things “Oh if you slowed down you probably wouldn't get them as bad.” is like telling a person “If you stop breathing I am sure the pain would away.” We know this, and lets be honest I am a mom of 4 “slow” is not in my vocabulary. Even if I managed to slow down a little bit, it still wouldn't help. I sometimes try to let things go, but then we get back to the first fear and the stress of not knowing if I am going to be able to help Annabelle finish that art project that is due Monday, or if I am going to be able to clean the house before the next one hits. Just thoughts like that bring on more stress than I can bare.
Some of these are also the people who love to say "Oh, well you could leave this, this, and this until tomorrow." that makes me want to scream. Leave it until tomorrow? Tomorrow? I may not be able to get out of the bed tomorrow. NO I do it while I am able to do it. I do it because tomorrow I may not be able too. And, I hate that. I hate that I may not be able to do what I want to do because of a migraine.
3. The skeptics.
Oh boy the skeptics. These are the people who have never had a migraine and have no idea how bad the pain can really get. These are the people who don't believe they exist. People like this make people like me suffer 10 times more than we should have too. Because of people like this people like me develop the irrational fear of what other people think of us, which leads to the fear at hand. This can really prohibit us from getting help because every time you go to a doctor your worried if they believe you or think you are just there to get high? I am still a firm believer everyone should have at least 1 migraine in there life time. That would change the way a lot of people look at people who have migraines.
The skeptics say things like “Oh how can it be that bad?” But let me tell you there is no words in any dictionary to describe the agonizing pain you experience when you have migraines. I would rather give birth to a cow. Seriously!
If a person doesn't suffer from migraines or have a child/spouse/parent who suffers from migraines they will NEVER understand. They can't understand how migraines get in the way of living your day to day life, not only for the person who suffers from them but also for everyone around them.
The list goes on and on it is something that people with migraines have to live with. They may not say anything and we may even go a few days without thinking about it, but all it takes is a slight tingle behind the eye or a nagging headache that will not go away to bring all those fears and feelings rushing back.
It is the roller coaster ride of migraines and fear.....all we can do is hang on.
A picture I didn't know my husband took during my last migraine. I found it on his phone this morning while looking at pictures of the kids.