I am Ellie. My goal is to raise awareness about living with migraines. Public perception of chronic illnesses is still very negative, especially invisible chronic illnesses because we "look fine" on the outside. Hopefully, you'll learn more about migraines and living with a chronic illness as you read more from my blog!
Yesterday, I tweeted about how writing a thesis with chronic migraine has been one of the most difficult things that I've done. It got an outpouring of love and it just so happened to be on a day that I finished the first draft of my body chapters. I was already feeling good, and I'm a month out from my final deadline. But it hasn't been like this for the whole process. I feel like I don't read enough about young adults with chronic illness going through school/university, so I thought that I'd spend a bit of time writing down my own experiences over the past year.
My thesis process started a year ago when I applied for a grant to do my research. I'm writing about the development of pain management as a medical specialty, and how the physician organizations that were created within the specialty became advocacy groups that influenced public policy in the 1990s and 2000s. It's a deeply personal project for me, as the first doctor who took me seriously was a pain management specialist. In essence, this is a look at how the pain problem (including the rise of the opioid crisis) came to be in the United States.
There's been a lot of emotions that have gone into this project. Writing a thesis is not an easy process, even for anyone who is able-bodied. Throw in a debilitating chronic illness and anxiety, and it makes a hard process even harder.
One of the main issues that I keep running into is completing the deadlines that I set for myself. This is applicable to anything outside of a thesis, either in work or in school, but I've been feeling it particularly often with this. I'll say that I'll want to write 10 pages by the end of the week, but then get hit with pain at some point and have to make up my classwork or completely lose a couple days. Then I would get upset with myself that I couldn't hit that deadline, which was self-imposed, and if I couldn't even finish that, how could I complete my thesis?
It's thinking like this that would lead me to feel like I was failing, that everyone around me was hitting their deadlines and was on track, but somehow I wasn't capable of doing this project. Which, quite frankly, is bullshit.
Just because I have down days, which I will always have, does not mean that I am not capable of doing what I put my mind to. Like everything else I've done in college, I just needed to do it at my own pace. So what does that look like? It means that I need to set realistic goals for myself, taking into account that I will have great days where I do everything that I set out to do and more, and I'll have bad days, where the best that I can do is get up and get out of bed. If I defined myself by my down days, I would feel defeated and incapable, which I did for a while. There have been so many days that I've sobbed on the phone to my parents, crying about how I'm behind and why am I even doing this if my brain won't work?
The reality is that my thesis is as much about my mentality and belief in myself as it is about the writing and the work that goes into it. I need to be kind to myself and understand what I need to work well when I am feeling okay to do so. I can't force myself to work with extreme pain. When my brain isn't working, it doesn't help to get upset at myself. I can only do what my body allows me to, so it's better to take the time to rest and recover than it is to push myself and put out mediocre work, or even worse, gibberish. Just because I am disabled does not mean that I cannot do this. I am passionate about my work, and through this whole process, I've come to know SO much about this topic. I mean, if you ask me a question, I promise you that I will spend hours answering it and discussing the evidence with you. My inability to work on some days is NOT connected to my passion or my ability to finish the project in the long run. It's just another fact of my life. I am a young, disabled academic. I can't work in the same way that my able-bodied friends can. And that's okay.
A main theme of my thesis is legitimacy. Whose pain was considered real? Whose pain deserved to be treated? As we all know, this is still an issue that many people with chronic illness and chronic pain deal with today. In a way, writing about these different theories has made me think about my own medical traumas where my pain has been ignored or dismissed. It's been difficult to work through my own history with chronic pain as I write about the ways that chronic pain has been understood historically. For a long time, pain was seen as either somatic or psychogenic (body or mind), and was theorized that it was impossible to be both. Now, there's the widespread idea that chronic pain is connected to both the mind and the body, not one or the other. But I've met people and doctors who have tried to convince me that my pain was a result of stress and anxiety, that it was somehow me that was creating my chronic health problems. On the other side of that is illness-splaining, where people think they know what treatments will work for me without bothering to ask what I've tried. One funny letter from the 1970s I came across in the archive I researched at recommended fire walking as a modality for chronic pain relief. Fire walking. As in walking across hot coals, barefoot. To relieve pain. Yeah, these type of "recommendations" for pain have been going on for a very long time.
At the end of the day, we are the ones who know the most about ourselves and what we need to succeed. Whether the task is completing an assignment, cleaning our rooms, or writing a senior thesis (or master's or Ph.D dissertation), we are the only people who know what we are feeling in our bodies and how to plan to succeed in our goals. The biggest part of what I've learned throughout this whole process is that I need to take it a day at a time. Every day provides a new opportunity for me, either to learn to treat myself more kindly if I'm in pain or to write about a topic that I love, even if I don't do as much as I want to. Anything that I do is good enough. Whether I write one sentence or five pages, whatever I am able to produce is something to celebrate. I've started telling myself that every day, and even though it doesn't seem like a lot, that extra bit of confidence helps me a lot.
On April 16th, I'm going to hand in my thesis. It may not be perfect, but I'm going to be proud of it no matter what. Because anything that I do and complete is something to celebrate. Repeat after me: I am capable. I am disabled. And I can do this.
P.S. I'm partnering with the Migraine World Summit to promote this great informational (free) online event happening between March 20-28, 2019.
Join more than 100,000 new and returning attendees and tune in to 32 NEW interviews to find the answers to help better manage migraine and chronic headache. Questions answered include:
What new treatments are available or coming soon?
What can I learn from successful patient case studies?
What new non-medicinal alternatives are recently available?
How can I break refractory chronic migraine?
When should I get a scan for my headache condition?
How are neck pain and migraine related?
How important are sleep and exercise really for those with migraine?
Are supplements or vitamins worth considering?
What are some common drug interactions and side effects we should know about?
What do I need to know about hemiplegic and vestibular migraine?
How important is diet for migraine and headache?
How can I interpret migraine research?
The World Summit brings together leading experts and is an excellent way to learn more about current migraine research related to living and treating migraine. I'm going to be tuning in too!
In June of 2018, I took my first dose of Aimovig, one of the new CGRP medications. I livestreamed on facebook about taking my first dose, posted about how excited I was to try it and then haven't talked about it since. I've always been one of those unlucky people with medications where it either has terrible side effects or it works for a bit and then isn't effective anymore. I was excited to try Aimovig, but also completely terrified. What would happen if it didn't work? Even more terrifying, what would happen if it DID work?
The injection itself was one of the best autoinjectors that I've ever tried. I mean, I've tried the Sumavil Dosepro, the generic Imitrex shot with the autoinjector needle, and I regularly do DHE 45 injections. Suffice to say, I am no longer scared of needles because of my migraines, but I'm still a little wary of autoinjectors. To be honest, the buildup to my first dose was the worst part. I psyched myself out and had to facetime a friend (who's also an amazing patient advocate, you rock Sarah!) in order to calm myself down. I didn't have Ciara's "One-Two Step" playing like I did for my first DHE injection, but Sarah was expertly talking to me about how the anxiety before the shot is always the worst, and the best thing to do is just to do it and get it over with. So, after about 20 minutes of freaking out, the shot was over in 5 seconds. Minimal blood, almost no pain, I looked up and went, "wait.... that was it?" I couldn't believe that 1) I had just taken a dose of medication that could change my life and 2) it barely hurt and it was over so quickly.
It's now been 4 months on the 70 mg dose of Aimovig, and I'm living a fundamentally different life than I have for the past 6 years. I've seen a decrease of 4-5 major migraines each month, with a decrease in severity as well. My daily life is not as badly affected, in fact, I've had less brain fog and cognitive effects with my migraines after I started the Aimovig. This isn't to say that my migraines are gone completely, because trust me, I still get migraine brain a lot, but overall, I'm able to be a lot more functional than I was before. Furthermore, I'm able to be active again. I've written a lot over the years about my struggles with being able to exercise without triggering. Over the past 4 months, I've been able to slowly work up to doing spin classes, yoga for 80 minutes twice a week, and just generally be more active. I still get fatigued and have to ration my energy, but my threshold for activity is much higher.
I also stopped the Botox protocol when I started the Aimovig to see if it could balance out the withdrawal that I usually get around 10 weeks after the Botox injections. As a quick recap, the Botox protocol is a 31 injection migraine treatment that's injected into the head, neck, and shoulders. The Botox helped me for a while, but since I was starting the Aimovig, I proposed to my doctor that we use this past summer as a trial period and fully test it out. Much to my surprise, I didn't experience withdrawal from the Botox after starting the Aimovig, which was great!
I've been hesitant to write anything about my experience with Aimovig mostly because I was worried that publicizing my early success would somehow jinx how well that the Aimovig is working. I'm definitely lucky that I've been able to see such an improvement in my life, especially without any side effects! I take it every 28 days, and I've been able to set up delivery with a local pharmacy so it's convenient for me. I never thought that one shot a month would be able to make my life so different from what I had been used to. I still have migraine days, in fact, I had one yesterday, but those severe days are not happening as often, which means that I get to enjoy my life just a bit more.
Some people may be wondering why I'm so excited about a 4-5 day decrease in my migraines. What difference does it make? When you think about it, I usually spend over half of my month with a migraine, being a chronic sufferer means that I get 15+ migraines a month, usually around 18-20 days per month for me. Taking 4-5 days out from that of severe pain means that I'm looking at about 10-12 days, which is a huge difference.
Recently, Teva Pharmaceuticals and Eli Lilley released two other CGRP medications, Ajovy and Emgality, respectively. I'll do another post soon about the differences between these three drugs, but I do know that there are migraineurs who did not see changes on Aimovig who are going to give Ajovy and Emgality a chance.
I'm currently in my senior year of college and writing my thesis on the development of pain management as a medical specialty and the relationship between physician pain management organizations and U.S. pain legislation between 1970-2010. So, I do have a lot on my plate, but I'm looking forward to being able to see even more success with the Aimovig in the coming months.
Do you have questions about Aimovig, Ajovy, or Emgality? Let me know and I can answer them in my next post!