Living with chronic illness has taught me that I’m so much stronger than I ever thought I could be.
I was 30 and newly married when I sat with my husband in the doctor’s office, officially getting my diagnosis of chronic vestibular migraine.
For months, I had been experiencing debilitating dizziness, vertigo, and light sensitivity that left me incapable of driving or working at a computer. Despite being so ill, I couldn’t help but ask my doctor what this meant for us and starting a family.
Of course, no doctor could give me a straight answer, many quoting a rule of three: One-third of their patients improve while pregnant, one-third stay the same, and one-third get worse.
I couldn’t imagine getting any worse, yet I felt my biological clock ticking away. Because of this, my neurologist and I created a plan of treatment that could mostly be continued during pregnancy.
Still, I wondered how I could ever care for a baby when I could hardly care for myself. How could I safely even hold them if I had a vertigo attack? What would my sleep schedule look like?
All of these fears are so relatable for anyone with chronic illness. Little did I know I would also have to battle infertility along the way.
Before my diagnosis of chronic migraine and vestibular migraine, having a family was a must for us. We wanted two or three kids and talked about traveling with them. We would be the cool parents who took them on lots of trips.
When I got sick, that vision that was so clear began to fade. I wanted to be the best wife to my spouse and the best mom to my future kids, but felt I couldn’t do either with this new illness.
Every effort to have children got put on pause while I focused on my treatment plan.
It’s hard to change your path like that. There’s a deep ache inside of you when you have to put aside your dreams for reasons you cannot control.
However, I do think those dreams gave me a big push to try anything and everything I could to improve. I researched day and night, asked my doctor about new treatments, tried acupuncture, massage therapy, and diet changes.
I would have probably done headstands all day if someone said it would help (news flash: It doesn’t).
As I began to see some improvements in my symptoms, the vision of a family started to come more into focus. I could see it more as a reality, rather than a dream of my past.
When I began to have more good days than bad, my husband and I decided we would start trying just to see what happened. I wasn’t in a huge rush because I was still working through my life with migraine and all that it entailed.
After almost a year of trying, I received my first positive pregnancy test.
Sadly, a short time later we learned I was having a miscarriage. I blamed myself and my broken body, which couldn’t seem to do anything right.
Somehow, I found the strength to try again, and about 6 months later the same thing happened.
At that point, we were referred to a reproductive endocrinologist for treatment.
Not only did I have trouble getting pregnant, but I also struggled with staying pregnant. After three losses and countless injections and treatments that were really tough on my head (and heart), we moved on to in vitro fertilization (IVF).
This decision resulted in a happy ending. Our little boy was born this past February, healthy and happy.
So, what about that “rule of three”? I experienced all three throughout my pregnancy.
My first trimester was rough, resulting in many days of nausea and vomiting. Apparently, this is more common in women with migraine, vestibular migraine in particular.
I tried everything from ginger to vitamin B6 to pressure points, but not much seemed to help.
The only thing that did help? Knowing things would eventually get better.
It’s something I reminded myself of often when I was first sick with chronic illness. I knew this couldn’t be my life forever, that things had to improve.
If I had hit rock bottom, it could only go up from here. I took things one day at a time and waited for the day the clouds parted a bit — and they finally did, about 16 weeks in.
I won’t sugarcoat it. Labor was difficult. As I was wheeled from my delivery room into the operating room for an emergency C-section, I had one of the worst vertigo attacks I’ve had in a long time.
As a COVID-19 precaution, you’re currently required to wear a face mask during delivery, so vomit was hitting my mask and coming back all over my face. I could hear my baby crying, but couldn’t hold him because I was so dizzy and out of it from having my anesthesia adjusted to combat the vertigo.
The silver lining was that my husband got to be the one to hold our first child, which was a sweet moment for someone who hadn’t been allowed at a single ultrasound.
Although I had to deal with anxiety and PTSD from my birthing experience, it’s amazing how I don’t regret one bit. I currently can’t imagine life without our little one.
If I could give two pieces of advice to anyone living with chronic illness, they would be not to let your illness sway you from things you really want, but also to prepare yourself for those hurdles to be a little bit harder.
I’m not the mom that can power through sleepless nights because I know my head will not cooperate. Because of this, I’ve realized I have to ask for more help than the average mom.
I have to be a little stricter with my diet, prioritize my mental health, and stay in communication with my neurologist on any changes.
If there’s anything I’ve learned from living and parenting with chronic illness, it’s that we’re much stronger than we ever thought we could be capable of.
Alicia Wolf is the Owner of The Dizzy Cook, a diet and lifestyle website for anyone with migraine, and an Ambassador for the Vestibular Disorder Association. After struggling with chronic vestibular migraine, she realized there weren’t many upbeat resources for people following a migraine diet so she created thedizzycook.com. Her new cookbook “The Dizzy Cook: Managing Migraine with More Than 90 Comforting Recipes and Lifestyle Tips” is available almost everywhere books are sold. You can find her on Instagram, Facebook, and Twitter.