A girl with her hands over her head looking at the sky
Anxiety,  Chronic Migraine,  Gratitude,  Migraine,  Vestibular Migraine

A Lesson in Letting Go with Chronic Illness

Having to deal with any illness for more than 2 weeks at a time can be such a beat down, much less chronic illness. Look at how many people complain when they have a cold that lasts longer than a week. When it starts extending months into years, it’s incredibly defeating. 

I know it may sometimes come off like I have the answers for everything, but really half the time I’m writing posts to prove to myself that these things can be done. Today’s post is exactly that. I’ve been totally lost in health issues that I can’t control exactly two times in my life, and both happened within just 3 years of each other. 

A Journey Through Chronic Migraine

My first experience coming face to face with debilitating chronic illness was when I developed chronic vestibular migraine. For me, it came on slowly until I could no longer drive or work.

My symptoms started out with mild dizziness that would come and go throughout the day. My doctors gave me rounds of steroids and told me I was just stressed or dealing with a residual head cold. That then progressed to me feeling motion when I wasn’t moving. I still remember driving my coworkers to lunch one day and slamming on my brakes when my car was in park. I completely felt as though the car was moving forward and everyone looked at me like I was nuts. 

From there I had constant dizziness or lightheadedness, extreme light and sound sensitivity. Going to restaurants became nearly impossible. The noise and all the motion made me feel anxious and tired, as if it was all constantly buzzing in my head. Trying to remember simple words was nearly impossible. I would forget what I was saying mid-sentence. I felt so, so stupid.

As things got worse, there were times I could not keep my head on my body. It felt like it weighed a million pounds or like it would pop off and float away. The symptoms are downright terrifying. No one could figure out what was wrong with me and it took a trip to the Mayo Clinic to finally get answers that I had vestibular migraine

A Journey Through Infertility

You never think you’re going to be that person who struggles with getting pregnant. You’re taught to prevent it most of your early years and that it can happen super easily. You have friends that get “accidentally” pregnant. I thought we’d be that couple. We’re young and fairly healthy….the perfect parents!

As we closed on our first year of trying without success, I finally got a surprise positive. Never in my mind did I ever think I would lose it. I was focused on the changes that would happen, where we would put the baby room, and if it would be a boy or a girl. Then one day I began to bleed. My OB confirmed I was having a miscarriage and assured me that none of this was my fault. I still blamed myself for having that wine before I found out.

The doctor assured me this is very common and about 50% of women go through this. That I would most likely never experience this again. 

Yet a few months later I found myself in the same situation, so we sought the help of a reproductive endocrinologist. I kept thinking we would be that couple that just needed a little bit of help. There’s nothing they can find that’s wrong with us. I even got pregnant our first round of treatment with our reproductive endocrinologist and was convinced it was finally the one, only to be back to square one…again. After more failed treatments, we’re now pursuing IVF. If there’s one thing I’ve learned it’s this below.

Acceptance is the first step to healing

I didn’t believe my vestibular migraine diagnosis at first. In my mind, migraines were just really bad headaches. And I wasn’t getting headaches. But after a second opinion with another doctor I trusted, which I always encourage, my diagnosis was confirmed. In order to get better and move on, I had to accept it.

From that point on, I devoted so much of my time to researching my illness, asking all the questions, and trying different treatments to see what worked and what didn’t. Unfortunately there’s not one path for any one person. What works for me won’t always work for everyone else. And so we get into this frustrating cycle of “Ok, I did everything I was told and I’m still not better…I must be broken.”

So how do we move forward when we do feel broken and hopeless? Here are some ideas I’ve been working on myself. 

Five Tips for Letting Go with Chronic Illness

  • Accept the diagnosis. Unless you truly doubt what doctors are telling you, which I totally believe we know in our hearts when something else is wrong. I didn’t quite feel content with my personal diagnosis until two doctors I respected both agreed. However, that second confirmation provided me with the confidence to accept my VM diagnosis and move forward.  This way you move towards treating the issue, rather than being stuck in a perpetual cycle of doubt.
  • Journal. Keeping track of everything from symptoms to how you’re feeling emotionally can be extremely beneficial when you’re in the weeds. Sometimes it’s difficult to see small positive changes that become a little more obvious when you read your own words.
  • Attempt to not compare yourself to others. This is a tough one for me. I recently found myself spiraling when my first scan for IVF showed that I only had 5 follicles, when all of my friends had 20-30. I felt like a total failure. Only when I began to share did multiple people remind me it just takes one. It just takes one right treatment. One right medication. One right lifestyle change. That one thing could be the difference for you.
  • Visualize what you want. I spend a lot of time visualizing all the things that can go wrong with  this treatment when I should be visualizing what I want and seeing myself overcoming these challenges. Even research has shown that people who imagine themselves doing a certain task actually improve their performance at that task. 
  • Find support. Whether it’s within the Migraine Strong Facebook group, support groups, or through instagram, reaching out to others going through the same thing can help immensely. Occasionally when I share my story, I do get the comments of “Just relax, it will happen”, but most often I get other people who tell me their journey and share the positives. In fact several women reached out to me to express that out of 1-2 follicles, that was how they got their miracle baby. I even have one new friend who went through her retrieval just a week before mine and shared all the details with me, which helps calm my nerves a little bit. It’s totally the same with migraine. Reach out to someone who gives you hope, or perhaps just share what you’re going through. Tell them your fears of trying new medications or frustrations finding a doctor and learn from each other. 

As if chronic vestibular migraine didn’t teach me this already, I’m realizing that I CANNOT CONTROL EVERYTHING. It’s so sad. I hate it. But I need to accept it. I literally cannot force my body into producing more eggs or completely curing my migraine disorder. But I do have control over how much I let it worry me and take over my life.

So in the famous words of Queen Elsa…I’m going to try to let it go. 

A Lesson in Letting Go with Chronic Illness

I’m Alicia Wolf, owner of The Dizzy Cook, a diet and lifestyle website for anyone with Migraine. After struggling with chronic Vestibular Migraine that was incorrectly diagnosed for months and feeling so alone, I set out to create a space that offered positivity, hope and encouragement to other sufferers. I develop Migraine friendly recipes that follow the Heal Your Headache diet, as well as gluten free options. Although the diet was just a small piece in my treatment plan, it really helped me get back to feeling like my old self and having 100% days again. In an effort to promote awareness for Vestibular Migraine, I am also an Ambassador for the Vestibular Disorder Association and a writer for Migraine Again. I’m currently working on a cookbook that will be published February of 2020.

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