10 Lessons from 10 Years: lessons from 10 years of *almost daily* chronic headache/migraine
- Julianna Woodland
- Oct 6, 2023
- 5 min read
Don't worry: the main message here is hope!!!
#1: The sun will come up tomorrow, so don't give up today
Whatever version of this works for you: hold true to it!
It will get better I promise, and it's important to hold onto hope! The Danielle Byron Henry Migraine Foundation: was started by my longtime headache specialist Dr. Dan Henry and family in honor of their daughter Danielle, for whom suicide was the end of the path with migraine; as it is for so many.
When I first started seeing Dr. Henry I was probably 15 years old, newly diagnosed with chronic migraine and full of despair as I did not know what this new future would look like. I remember saying at one point that I did not think I wanted to "be here anymore" past the age of 25 if I was still having migraine.
Well I am currently typing this at age 26 with a headache, adjusting to the fact that I have chronic migraine likely forever. It's all about perspective baby!
When you feel like you are at the lowest of the low: try to remember what it feels like to be having a good day: because I promise you will again.
#2: MIND OVER MATTER: aka your brain is so much more powerful than you realize.
I think migraineurs have some of the most powerful minds ever because you are almost constantly battling something within but if you can look at that as a strength you can harness that mind power and inner will/strength to accomplish some incredible things!
* learn to challenge yourself because you WANT to not because no have to.
* do this by learning new skills, hobbies, etc.
“Change your thoughts and you change your world.” —Norman Vincent Peale
****we truly create our realities!! change your perspective == change your life :)
#3: My mom was right: but it's ok to learn at your own pace ----lessons from being diagnosed with chronic migraine in my teens!
I'm coming to learn more and more that all of the things my mom has tried to get me to do for myself (ie: take breaks, eat healthy, no processed food, mobility each day, prioritize sleep, etc. etc.) were usually correct but I was a teenager when she was trying to teach me life practices that often felt completely opposite of what I wanted to be doing for my age-usually because they felt against the grain or too "slow" for what you are supposed to be doing as a kid.
*but guess what*
it's ok that I eventually came to the same conclusions as her and I am grateful that I learned from the best! (that's you mom!)
#4: It's not in your head
You didn't make it up, you are not exaggerating or pretending, you understand your body better than anyone else. Trust yourself. Listen to yourself. Go with your gut. Literally. Find a Dr. that doesn't feel condescending, find a community that speaks to your experiences, because you and your experiences are valid. Invisible does not mean made up or not that bad. And it's not normal to be in pain all the time!
"Many medical professionals want to help their patients get the best care possible. However, the misconceptions of migraine often cause people to unintentionally dismiss the impact it has. As a result, medical gaslighting can occur. Medical gaslighting can cause damage not only to your diagnosis but also to your relationship with your doctor. A patient-doctor relationship is one built on trust and understanding. It is important that patients know how to be their own best advocate and for doctors to be understanding and compassionate about their patients’ conditions."
#5: Hold onto a habit---if nothing else
Developing routines and habits and then STACKING THEM TOGETHER has ultimately been how I have been able to function the most successful I think. For me; this is ultimately an energy thing. I like to get my tasks done in couplets so that I feel my energy is used most efficiently. Even if you can't remember through the fog the names of the meds you take or the reason why you do your skincare in a certain order just retaining the muscle memory to do those tasks and actions is helpful for me.
*Even when life gets down to just a checklist of:
meds:
eat food:
go for a walk:
*making sure I can still get those checked off each day is good because you deserve to keep taking care of yourself!
This is why I find habit trackers/journals or just the habit of moving your meds from one place to another after you take them etc. a good thing to do because sometimes it's hard to remember if you even did something when you have so much brain fog/fatigue etc. etc.
#6: Live life at your own pace, and in your own way: even if it's against the grain
Perhaps the biggest lesson I have learned from chronic migraine: Even if it goes against the able bodied pace of the world, do what is best for you! Yin + yang. Fast + Slow. Race + Rest.
#7: Remember to have fun
You will spend a lot of time being a caretaker of yourself, and things that used to be fun might just not be anymore:
*taking a shower now starts to feel like a chore
*walking around target used to be fun now it's a nightmare
*you would never just invite your friends to go shopping now.....
But this doesn't mean life isn't fun and you can't be fun! Finding new things to enjoy or enjoying the same things in a different way is just part of navigating migraine.
*Try to remember that currently, media displays WhAt'S fUn in pretty ableist ways, and you aren't just limited to alcohol, roller coasters, loud music, parties, etc. you can be fun however you want!
#8: Accept/Don't a label you feel comfortable with: But address your migraine
IMO: my life gets easier with people when I just address my migraine! I used to try to never address it unless i needed to but why was I spending so much extra effort masking the fact that I have a 24/7 headache? Life is easier when I just live openly, and then when I can excuse myself or attend to something that I need to due to migraine it's so much less of a hassle to address each time!
#9: FIND A COMMUNITY
This is paramount to mental health in my opinion when living with a chronic illness or disability like migraine. Find somewhere that you can go to find resources, education, and support!
Here are a few:
The American Migraine Foundation has the online Move Against Migraine community
The DanielleFoundation has multiple communities/resources for age specific groups such as migraine at school!
I have found lots of online communities! I love following other accounts of migraine warriors as it makes me feel valid in my own weird lil life and we can chat online and send each other our funny ice cap selfies! Some accounts I love:
#10: Never give up hope!
Even on my darkest days in the middle of my darkest weeks in the middle of my darkest months (you get it) I was lucky enough to be surrounded by people who WOULD NOT let me give up even though I expressed that I wanted to! Migraine really is a painful experience to live alongside so make sure to communicate when you need help. But remember that more and more medication, devices, studies and more are coming out all the time: and refer back to lesson #1!
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