Living the life of a chronic migraineur

The following post is not something that I have written, but was written by Emily A. from migraine.com. A lot of what she wrote, is like she took the words right out of my mouth. I am a spoonie. I live with migraine every day of my life, some days are just much worse than others. I haven't given up hope. I know it is so hard for many to understand, because on the outside, we don't look sick. I do my best to show my brave face when I am in public. I can tell you first hand, that living with chronic pain day in and day out can lead to depression. I find myself getting more and more depressed as the days go on. I am in a relentless battle with time, my health, my life... What life? Hibernating because the pain is so intense that if I try getting up and moving around I will start vomiting, get very dizzy, light headed, short of breath and possibly fall if my leg goes numb. Did I choose this life? I honestly don't know, but I do my best to make the most of what I have. I take advantage of the days that I am feeling better. Sometimes I push myself a little too hard, and I know I will pay for it later, but I want to live my life. I don't want to sleep my life away. I want to be there for my girls. I want to make ever lasting memories with them. I take each challenge as it comes and I deal with it the best way I can. Humor and sarcasm get me through the really tough times. I still love to make people smile. I still love and care for others. I love serving others and helping them in any way that I can. I am very independent and it is very hard for me to ask for help. I feel bad enough asking people to drive my girls to dance on the days that I cannot drive. It is what it is and I will continue to carry on.

http://migraine.com/stories/realized-morning/

Things I realized this morning

Posted by Emily A—March 17th, 2014

I woke up this morning and cracked my eyes to the usual mind numbing pain that always greets me in the am. I have gotten used to the feeling that welcomes me to the day and have learned to wait for a 30 count before it hits. Sometimes I almost feel a little squeal of glee if it takes a full sixty seconds or gasp ninety before I get hit with my familiar friend.

Approximately 10 months ago I was diagnosed with chronic migraines. That day I was hopeful for the first day in a long time. After a yearlong cycle of a migraine day in and day out, visiting my doctor every month, trying every single medication under the sun, MRIs, and CAT scans. I finally had a neurologist look at me and give me an answer. Halleluiah! Now, I had been no stranger to migraines, often getting them for months on end but never one straight for a year and never one without any end in sight. So when I got the diagnosis and the decision for Botox I was certain. This is it. This will fix me. I am going to get these shots and all will be well.

  

My first round went fine giving me a slight respite, but my friend came back soon after and has subsequently been able to stand tough against the last two rounds of Botox. So I am now rounding out 2 years of the same migraine.

That’s what brings me to this morning; I looked in the mirror and finally registered what my doctor had said. He said Chronic Migraine. And that is what it is. It is a chronic disease that has to be battled every day. People will often say, oh yeah I have had a migraine I know how that feels. But imagine having that migraine, that you may have had for 4 or 6 hrs, maybe even a day, I have had it for seven hundred and thirty days give or take a few…..

One of the hardest parts of having a chronic migraine is that I don’t look sick. In fact chronic migraineurs try very hard for people not for people to know that they are having a bad day or avomiting in your head day, as I like to call it. But as Christine Miserandino tells in her, Spoon Theory, it often will take all our energy to do the smallest outing that we pay for the next few days. You can often tell us apart by the fact that we wear our sunglasses on cloudy days, can easily be distracted by watching the floaties and auras floating around you as you talk. Our words and thoughts often get lost or scrambled. And our intentions are good but our follow through is lousy. I always have grand plans of what I can do for the day, week, and month but often find that after I have made it through my first few tasks dealing with the roaring in my head makes it impossible. When I am out of my bed I dream about crawling back in it and covering my head to block out life. When I am in bed I day dream about what my life was like before. Before I realized the word chronic…..

It is very hard for chronic migraineurs that don’t look sick because they can be told, at least it isn’t fatal, or at least it’s not cancer. But chronic migraineurs have an extremely high incidence of anxiety and depression. There are many days that I sit and dream about the quietness that death could bring just for the release of the constant pain that is going on in my head. No I am not “suicidal” I just have a chronic migraine. I think that that is a thought very common in people with chronic conditions. Looking into the abyss of chronic, at times can feel like a long stretch in front of you. I am very blessed that my husband and children understand that mommy needs to spend a lot of time in a dark roomand that sometimes that they all need to be very quiet but it is very hard to tie them to this quiet life as well. One night the four of us were driving in the car and after admonishing them for being so very loud I asked my husband if they were as loud as they seemed to me. While he supported me to the girls, he quietly told me, no they weren’t that loud at all, and suggested maybe I should get ear plugs. I looked at him horrified. Didn’t he realize that’s where the pain releases? If I use ear plugs it will get trapped in there! Completely irrational but, that was my first thought!

I woke up today and had to admit to myself every day is my fight. There is no cure. There is no magic combination of pills and herbs and yoga positions that will suddenly take this away from me. Does this mean that I am going to stop doing and trying everything. Hell to the NO! But I can no longer sit down and pretend that the next treatment it going to make my life a completely different thing. I will always be either in this place or waiting to be in this place. So, if I can’t keep the plans I made, I apologize, and if I can’t chat on the phone please understand that if feels like you are shouting in my ear, if I haven’t texted you back I probably forgot it was there, if you really want to find me, you know where I will be huddled in my bed that is dark and quiet. Believe me I wish I were with you.

For a chronic migraine, there are no triggers, life is my trigger. For chronic migraineurs there are no cures, there are only patches that will get you through to the next bout. Have we tried, acupuncture, herbal remedies, diets, standing upside down on our heads? Yes. The answer is if we have gotten diagnosed as chronic migraines then we have tried anything, and if by chance we have been able to get up and put our mask on that day please let us wear it, under our sunglasses and large hats. It took a lot to get there, and ain’t nobody got spoons for that.