Modern Migraine Mama

Being in a relationship or marriage with another person is hard—there are silly fights over socks left on the floor or whose turn it is to take the trash out—then something BIG happens in a relationship that changes the dynamics. I have been happily married for almost 15 years to my graduate school sweetheart. I fell in love with my husband the day I met him, but didn’t tell him for MANY months; when we finally professed our love to each other it was supposed to be happily ever after. But 6 years ago, a new woman entered into my relationship with my husband. This woman was NOT invited to my happily ever after. This other woman is my chronic illness.

Chronic migraine entered my life like a thief in the night–slowly emerging from one spinal surgery after another–till finally settling in and setting up camp in my body. When I first started having my spinal surgeries; for the herniated discs that were causing me horrific pain; this other woman in our relationship was nameless–she simply flittered in and out of our lives. Three times she came around until we finally thought we had been victorious at fighting her off.

After my son was born, the B&*^% was back. By this time, my husband and I had affectionately nicknamed this other woman in our marriage as Patricia, or Patty for short. When Patty entered our marriage, I never in a million years imagined that she would stick around as long as she has. She is a mean B*&*$ that hangs around WAY too often in our home; destroying everything in her path. She’s irritable, frustrating and NO FUN! She never wants to leave the dark cave, let alone cook dinner and spend time with family—I hate Patty— she is EVERYTHING that I AM NOT.

Like I said before, being in a marriage with someone is hard work–it’s not like the fairy tales that we were brought up to know. Its constantly fine tuning an instrument; that can get out of alignment with one grain of sand. We had been married almost 11 years before Patty entered into our lives–our marriage had hard times (like most do), but having multiple neck surgeries and infertility makes for some big challenges in even the strongest of foundations.

Last December, when I went to Michigan to “hopefully” battle Patty for the final time in the inpatient program for my chronic migraine–I was SO hopeful that she would finally leave my life. She had slowly begun to destroy everything in her path: my life, career, relationships, hopes and dreams. When I left the inpatient program I was so overwhelmed with joy–I had pain levels that were manageable and more tools for my tool box than I ever had before. I prayed Patty would be put to bed–and maybe now only come out every once in a while.

What I’ve learned over the past year is that healing is not linear—one step forward—six steps back. As soon as I feel like I’m gaining traction again, then here she comes with guns blazing that mean old B Patty. I’m going to be 100% honest–Patty has caused some fractures in the once solid foundation of my marriage. These fractures are not unrepairable–in fact we are working DILIGENTLY to patch these fractures. My sweet, loving and kind husband is doing the BEST he possibly can and is just as sick of Patty as I am! The thing we have learned in this last year as a couple is that we CAN NOT let her drive herself between us. We must join teams and FIGHT this monster together—because lets be honest–we have no idea how long she is going to be around. So we might as well learn how to manage life with her.

I hope and pray that one day Patty will be in the rearview of our life, and I will have my migraine attacks managed to a place that I can HAVE a career again, I can fall in LOVE with cooking again and can be the FUN and ADVENTUROUS mom I always dreamed I would be. But for now, I spend each day walking the chronic tightrope, holding fast to the days when I have little to no pain and leaning into the waves when Patty sails in again. This is my reality. This is life with chronic illness.

The days tick by like a lonely clock on a waiting room wall. Every day is the same routine; care for my son, care for myself. But the big ELEPHANT that has appeared in the room over the past two years is..who am I? No longer am I the girl that had big dreams and took challenges on head first. Who would jump into a car for an adventure at a moments notice. No, that girl is long gone. That girl was taken from me by this illness. An illness that is invisible to the naked eye, but completely and utterly has rattled me to my core. It has smashed dreams and desires. It has cancelled trips and plans. It has left me in a hugh undone mess.

I turn 40 in just a few short months, and the thoughts that continue to play over and over again in my head are….”THIS is not where I was SUPPOSED to be at this point in my life”. You see, I had big plans… College, Grad School, Marriage, More Grad School, Family and Career. NONE of these plans included a life changing illness that has left me nothing more than a shell of the person I once was. Every now and I again, I get a glimpse of her, but I have to admit, I am PETRIFIED that she is forever gone.

But how do I move forward from this? How do I find the “NEW” version of me. Where do I even begin? I’ve spent HOURS rolling these words around in my head—trying to define who I am now. I am NOT my illness, but what do I like, what will my career look like; or even worse, will I ever be able to go back to work?!

This illness has caused me to take a momentary pause in my life–to stop, reflect and change course. I will find this “new” version of myself. It may take some time, but my firery spirit will not keep me from searching for my new passion. The thing that makes me excited to get up each day. I will rise from these ashes…it may take longer than my TYPE A personality would like..but I WILL rise above all of this.

I have found myself feeling more and more drawn to advocacy for chronic illness and for parents and families whom are struggling with chronic illness themselves. These two things are very near to my heart, as I myself am a mom who struggles on a daily basis to care for my child and myself. So perhaps THAT is my new passion.

That’s the thing about passions, desires and dreams–they have the ability to be changed. You do not have to stick to what you wrote down in your diary when you were thirteen years old. So I am setting a new goal for myself..over the next 6-9 months, I will pursue this passion of advocacy–in whatever form or fashion that may manifest–and see if THIS is what I was made for. I have always said, there is a purpose for all this pain–for suffering through 8 years of infertility, for managing chronic migraine for the last 6 years and through it all fighting like hell for my marriage. You see, the “in sickness and in health” part of your wedding vows; were taken VERY seriously by both my spouse and myself–we just never in a MILLION years dreamed it would happen so early on in our marriage. I am forever grateful that I have a man in my life that didn’t just give up and walk away when things got hard—that he has fought tooth and nail to take care of me and my son.

I am not sure what tomorrow will bring, but we are told to not worry about tomorrow, for it has troubles of its own. So for today I will, inhale deeply; focus on the special time I am being able to spend with my son and trusting (and hoping) that the next season of my life will include me rising from the ashes of my former life.

Being a parent is tough— add a chronic pain condition to the mix and it can feel down right impossible. I am here to tell you that some days it does feel impossible, and I have to call in for backup–but over the past two years, I have developed some strategies for coping and surviving my toughest days while still being a present mom to my son.

1). Develop an outdoor/exercise routine— I am a routine girl–always have been. Even on the days I do NOT feel like going outside; I will still take my son for a walk around our neighborhood. Exercise has been proven to help with chronic pain, so I figure I should at least give myself a few minutes a day outside with a gentle walk If its a bad day, I will give myself 10 minutes of walking–and if I do not feel any better, we turn around and come home. On other days, after 10 mins, the pain may have subsided a bit and will allow me to finish our walk. The exercise and routine is good for ME but also WONDERFUL for my son.

My son is 21 months and LOVES being outside. We live in an area of the country that is fairly hot, so we have to do all our “outside time” early in the morning to avoid the scorching heat and humidity that can easily aggravate a migraine. When we return from our walk I will allow my son to play outside for a few minutes. Usually with sidewalk chalk or bouncing the ball around. I AVOID NOISY LOUD TOYS on days when I am having very high pain–it can exerastibate an attack very quickly! If it is an extremely hot day and my pain is rising quickly–we play in the garage for no more than 20 mins then come inside to cool down.

2). Easy meals/snacks– Meals…ugh..I feel like meals are one of the hardest parts of my day when I am having a bad attack. My son actually LOVES smoothies, so I will sometimes make he and I a smoothie on the days when I am feeling very nauseous. He thinks he is getting a treat, but actually I’m hiding lots of yummy veggies in his smoothie! 🙂

There are a few store bought items that I keep on hand if I am having a particularly bad day and JUST cant even put a sandwich together here are a few of my favorites:

TIP: Muffin Tin Snack Tray–If you search on pinterest you can find LOTS of ideas for healthy snacks. Here is one page that I particularly love! My son is still a little young to be left unattended with a snack tray–BUT I do put them together for him to have and bring them out during the day so he can choose what he would like to snack on. It helps me by not having to THINK too much during an attack (hello brain fog), and allows his toddler self to make choices (WHICH he loves!)Mothers Morning Out/Preschool

3) Mothers Morning Out/Preschool– I am currently a SAHM–with my health and little job prospects in our area–staying at home is my best option right now for our family AND my health. If you can afford it I would HIGHLY recommend a Mother’s Morning Out program. Often these are run through churches or community organizations and are VERY affordable. Being that my child is an only child, he doesn’t have any brothers or sisters to play with. And I am often feeling too crummy to get him to any sort of play group. So this option works well for my family. He goes two days a week for 3 hours. This has helped me TREMENDOUSLY! On days I feel ok, I can run errands—on days I feel horrible I can drop him off and come home and climb back in bed for a few hours. If you can make it work with your budget I would look into this. Just to give you an idea of cost, our church charges $115 a month for the two days a week–thats WAY cheaper than hiring a babysitter! All in all this has worked out well for our family because it gives me time to rest and provide some self care AND lets our son get some socialization with other children his age!

4) Quite indoor activities– Its a rainy or HOT day and we are stuck in doors ALL day—and my head is POUNDING—what do we do all day! Here is a list of things that I have found are perfect for this situation:

TIP: AVOID and HIDE ALL TOYS WITH SOUNDS AND FLASHING LIGHTS!!!!!!! I have learned this the hard way! I will often tell my son that we will play with those toys OUTSIDE on another day, or when his dad gets home from work!

5) Nap when they nap–This phrase was repeated over and over again when my son was a newborn–but I have found it is equally effective now! Whenever my son goes down for a nap–I take a nap or rest. The dishes/laundry/housework can wait–your child needs you to be at the best you possibly can be–so allow yourself some grace and REST whenever possible!

TIP: Children are essentially little adults–so talking with your child about your chronic illness can be very beneficial. Since my son is so young, its a bit harder to explain to him the ins and outs of why Momma doesn’t feel well–but he knows it–Kids are so instinctive and can pick up on the subtle things you do (or don’t do ) when you are having an attack. This article , put together by the American Migraine Foundation gives some great talking points for talking to your children about your chronic condition.

All in all, having a chronic pain condition, makes parenting complicated; BUT NOT IMPOSSIBLE! You just have to be more strategic about your energy and how many spoons you want to use up for the day. Some days, I admit, the most I can do is lay on the couch–AND THAT IS OK! Other days when I feel good, I will take my son to the park or to a local play group. The thing with chronic migraine is no matter what you do RIGHT, you sometimes JUST get an attack–and you have to be prepared for how to manage that and care for your children. Ill also admit that there are days that I know something is SO special and important to him that I will push aside my pain, slap on my sunnies and just do it—because that is what being a parent is ALL about–sacrifice.