I have had migraine attacks since I was 5 years old. At first my migraine disorder was episodic, meaning I had fewer than 15 attacks a month. After college, I started working at an incredibly challenging job, and the stresses of the real world hit me hard. Since then my disorder has become chronic, and I have a migraine almost every single day.
To this day, stress is one of my biggest triggers. My migraine attacks vary in levels of pain, but are an all over extreme stabbing, pulsing, squeezing, searing head pain that’s difficult to describe if you haven’t experienced one. With the head pain comes severe neck and shoulder tension, stomach issues, visual disturbances, shaking, throwing up, diarrhea, loss of speech, and confusion, along with audio, visual, and tactile sensitivities. My attacks only seemed to get more intense the older I got.
For years I powered through the pain, and was working a very stressful job when my husband and I started trying for a baby.
I will be brutally honest in saying that I was mostly bedridden for about 20 weeks with migraine during my first pregnancy. I had to cut back my hours at my job and switch to part time, but I was still missing work.
That was when the real fear kicked in for me. I was about to bring a tiny human being into this world, and I was so sick I could barely function. How was I going to be able to take care of my baby if I couldn’t even make it to work?
Luckily, my migraine attacks subsided for a time. I was able to enjoy the “glow” through the rest of my pregnancy, instead of constantly battling pain. With my second child, my migraine attacks were much more manageable. That time around, I felt like a normal pregnant mom with a toddler — tired, but happy.
Parenting with chronic illness
Now I’m a proud mom of a 4- and a 7-year-old. We made it through the baby phase, and now I have a toddler and a bright first-grader who show me every day how hard work pays off. Long days and short years is the best way I can describe being a mom with chronic illness.
Despite my periods of light remission from pregnancy, every day I wake and go to sleep with a migraine. It escalates and deescalates during the day depending on countless factors. Children are wonderful, needy little people that require attention at all times of day and night. Pain doesn’t care that my kids need breakfast and want to be played with.
Dealing with mom guilt
Almost all moms experience some sort of guilt when it comes to parenting, and those of us with chronic illness are no exception. Being a mom isn’t easy. Being a mom with chronic illness feels almost impossible sometimes.
My guilt revolves around not being able to be the super mom I always imagined myself being.
But over the years, I had to give up on the desire to be the “perfect mother” and simply allow my children to see me as human. I’m not perfect, I‘m not always healthy, and I can’t always do the things I want. This is my reality, and the truth is that all parents have to do the best that we can with what we have — and be gentle with ourselves in the process.
I feel guilty for missing events and milestones. I missed my daughter’s first dentist appointment, and it felt like I was the worst mom. Guess what? She has had many, many more appointments that I’ve been at since then. It was OK.
I feel guilty asking for help. I feel like I should be able to do everything. Well, I can’t. Asking for help is hard, but I’ve learned to lean on my support team of friends and family. They are ready and willing to help, but I need to be honest and ask for it.
I feel guilty for not being able to do as much. On weekends, I hear my husband outside playing with my children, and I feel upset that I can’t be there. I’ve learned that if I can’t do physical activities, then I need to have quiet activities on hand like crafts, books, and puzzles around the house so I can sit with my children and watch them paint without chasing them around the yard. Quality time is quality time, even if it’s quiet and contained.
I feel guilty that I cancel plans. When you’re unwell, that often means you miss out on events and activities, like playdates with other kids and parents. I try not to slam our days with activities in general, but if we do need to cancel, I try to have a plan B activity in place for my kids.
I feel guilty about my mood swings. Being in pain is exhausting and maddening. I have to work extra hard to be conscious of my moods so as not to take it out on the wrong person. Meditation, yoga, warm baths, and deep breathing all help me cope with my moods.
I feel guilty that migraine is hereditary. My children have higher chances of having migraine, and that is a heavy burden.
The best way I deal with this guilt is by teaching my children the value of their overall health. We talk about nutrition, not weight or beauty. Fruits and vegetables are filled with vitamins that are good for your body. Protein builds muscles. Healthy carbohydrates provide energy. The body needs a lot of water, so drink up! We focus on how the food will make us feel. My children help with grocery shopping, meal prep, and cooking.
We also value physical activity. Strenuous exercise can trigger a migraine attack, but some sort of movement can be really helpful. Just a slow walk or gentle stretching helps to keep my body strong and to recover from migraine attack. I instill in my children the importance of fresh air and active bodies to improve health. A hike in the woods or walk on the beach can make a difference to the mind, body, and soul. Making it fun and restorative are the keys.
I can’t help the genes I passed on to them, but I can teach them how to live a healthy life. I hope that these habits and relationships with their bodies will positively impact their well-being for life.
Chronic parenting tool kit
All parents need help and support when raising a family, but having a chronic and sometimes debilitating illness means you have to be extra prepared. Here are some of the things that help me be the best mom I can be:
- Support system: It takes an army to raise a child, as they say, and I am lucky to have a great network behind me. I have family and friends who know about my condition and who I can reach out to when I need help. I have carpool moms ready for pick up, grandma ready for a sleepover, friends ready for playdates, and a husband ready to take over after work. Building a support system has allowed my children to continue with normal life even when a migraine attack knocks me out.
- Advance planning: I am constantly in “prepare for the next migraine” mode and find that the more I’m prepared, the less of a struggle it is for everyone. I keep food, drinks, and snacks prepared at all times, and I encourage my children to be independent. I also prep meals for the week that my husband and children can throw together after work without much hassle.
- Migraine management: I make sure to have my migraine tool kit ready at all times, even if we’re on the go. I keep my medication safe, secure, and filled. I have a variety of other products I use to prevent and ease symptoms, like lotions, essential oils, and sunglasses, all nearby so that I’m ready when a migraine hits.
Getting past the guilt
As a parent, there will always be things to feel guilty about. You will say the wrong thing, miss the event, and lose your temper from time to time. Those of us with chronic illness feel this acutely. But the truth is, getting mired in guilt may cause you to miss out even more. As a parent living with migraine disorder, for me it’s all about perspective.
I spoke with a couple other moms who live with migraine, and two things we all have in common are empathy and gratitude. One mom I spoke with who experiences episodic migraine and anxiety said, “I may be down for a day or two, but it’s better than suffering from something that would take me away from my kids all the time.”
I feel the same way. Living with a chronic illness means that I am taken away from my children more often that I’d like to be. But I feel grateful that I have such an amazing support system. I feel lucky that I have a doctor who listens to me while others go to the ER and face stigma that prevent them from getting the treatment they need. I feel empathy for those who suffer more, have no relief, and are alone. I feel lucky in a lot of ways. When others say “I don’t know how you do it,” I think, I don’t know how others do what they do!
One mom told me she keeps the saying “this too shall pass” in her mind on difficult days. I think this is a great way of dealing with both chronic illness and parenting in general. My son is currently going through a toddler-tantrum-meltdown phase, and I tell myself almost every day that he will grow, learn, and eventually pass through this. My migraines are constant, but being reminded that I have fought this battle before and come out on the other side is comforting. I may not know when, for how long, or to what extent, but I know this too shall pass and we will all be stronger.
I am also inspired by my daughter, who is more amazing the older she gets. She is self-reliant, helpful, and an amazing caregiver. I see how she helps out with the dog, her younger brother, and even me occasionally, and I am so impressed by her maturity and compassion. She understands that people are different and struggle with their own issues. She is kind to everyone, motivated, and loving. I see these things and have to give myself credit — I may not be “super mom,” but in her I can see that I’m doing something right.
When I really step back and think about it, I’m doing a great job despite my chronic illness — and in a way, because of it. Migraine steals away precious time from me and my children, so when I am well, I find I’m not multitasking and playing on my phone while we’re together. My focus is on them and the memories we’re making.
Even though most days I curse migraine, because of it I don’t take my time with my children for granted. I make every day the best I can, and they are thriving.
NPS-US-NP-00307 MAY 2018