Managing migraines - Invisible illness
My Migraine Story
Hi creative friends!
Since my early 20’s I have suffered from migraines. They are not something I usually talk about. But now that I’m reflecting on them I realize it’s because they have become part of me as much as my hands and feet are. They simply exist with me. While often people offer suggestions on how to treat them, I’m not looking for them.
When I started getting them I was in college. I went to the doctor and they offered medicine which made me feel worse because they made me extremely short of breath. After a while I just learned to manage them. But there are so many different aspects to them. It’s more than the pain. It’s also the living day to day with them, even when they aren’t present or doing something to avoid them. While I won’t be sharing which medications I do (or don’t take) because I believe that’s something private and unique to each person I do want to share how they affect me in life and how I cope with them.
Coming up June is migraine awareness month I learned from the American Migraine Foundation #MHAM. They explain that more than 50% of migraine patients go undiagnosed. They also explain that people with migraines are 5x more likely to develop depression than those who don’t experience migraines. For those who suffer from migraines 90% experience some effects in their education, career, and social activities.
For a long time I had no idea that there were things I could do to help minimize or prevent migraines all together. For many years I simply waited until the attack happened. Then I would cope with it the best I could. It would be hard to concentrate on school and later at work. While there is a list of triggers I believe the primary ones to be heat, hydration, not eating at regular times, lack of sleep, and screen time. Unfortunately I live in a pretty hot area so there isn’t much I can do there other than find myself in an AC room. I carry around a jug of water and keep an eat out for eating.
The screen time I’ve noticed is definitely harder because it can be watching tv, being on my phone, or creating on my ipad. What I have done is set timers for myself to help give me breaks. Nothing is perfect and some days I’m better at it than others.
I find the hardest part of living with migraines is living life. Recently I spent some beautiful days traveling and enjoying gardens. While I was out exploring I felt the familiar pain start that alerted me to an attack coming on. I was prepared with water and snacks but it was so hot & humid (even though I was wearing a hat and drinking water) it didn’t matter. I was enjoying the day with my husband and I just turned to him and said I’m starting to have an attack. I sat down for a bit and told him I’ve really enjoyed our walk through the gardens, but I don’t think I can finish it. I didn’t want him to stop on my account and I really wanted to take a moment to take care of myself so we agreed that he would finish the walk (there was only a bit left) and I would wait for him at the front under shade. Once he finished his walk (a 5 to 10 min walk that was left and he said wasn’t too exciting) we went on to go pick up dinner.
What was helpful was that I had my handy snacks and water with me. It was wonderful to feel so supported by my husband. When I have an attack sometimes I just can’t keep going with the activities I’m doing. Sometimes I can. There is so much variation, but it helps that the people around me are flexible with me. In this particular attack I believe it was due to the heat and walking around for so long.
What can others do to help people with migraines?
Check in with them. Don’t assume that just because they aren’t telling you that don’t feel well that they feel okay. What can you ask?
How are you feeling today?
Is there anything that I can do to help you ?
What do you need?
Be flexible with plans. I think everyone has different needs but one thing that those who suffer from migraines can agree with is flexibility is crucial. Flexibility is essential especially when traveling or doing trips that away from home.
For the migraine sufferer
One of the hardest things to do is finding your triggers, but it’s honestly so helpful once you zero in on them. You can’t always prevent the attacks but you can be on the look out for them. The migraine buddy app has been incredibly helpful for me. It allows me to log a migraine attack as soon as it starts, even if it started in my sleep. It allows you to log everything from medication to weather patterns, to activities that you might have been doing when the attack happened. It’s free fro the most part unless you want to upgrade for very specific features. I found that the free version is enough to log what I need.
It has helped me learn more about my attacks. I thought my attacks weren’t very long. I didn’t know what my triggers were. After using the app for almost 2 years I have learned that my attacks can last from one day to a couple of days with various levels of pain. I also learned that my attacks were related to things like the heat, hydration, and skipping or delaying meals. I found that for me they really aren’t related to my period or to strong foods like cheese, although having something extremely spicy can increase an attack. Sleep depravation can also trigger a migraine for me. I’ve also learned what medications work for me and how much of the medication I need.
The other thing that has helped me is to keep a fun digital of the days where I’m feeling good. What I have been doing is taking pictures and then making digital scrapbook pages on my digital passion planner. The reason this helps me is because it reminds me of the good moments when I’m feeling down about my migraine pain. I can look back and see what places I’ve visited, activities I’ve done, and thinking about those moments brings me back a bit of that joy that I felt. Now I’ll be honest I don’t alway do this and I don’t necessarily do this while I have an attack always, but I do look at the pages when I’m feeling low to help me cope.
The biggest thing I hope you the migraine suffer understands is you aren’t alone. Know that the pain will pass, even if in the moment it doesn’t feel like it and enjoy those moments that you are pain free. When you are experiencing pain take care of yourself.