I hate making a list of only 5 people you “must follow” in the migraine/chronic pain community because my list is infinitely long. Every day, I bookmark new blogs, tumblrs, Twitter accounts, and Facebook pages that inspire me. I’ve also learned that people look for different things in an online community - some want support, some want entertainment, while some strictly want facts and up to date research.
Since I seem to be putting twists on these prompts, I’d rather tell you what I don’t look for in a health blog/social media account. I try to stay away from…
- People claiming they have found the “cure” for migraine relief. Oh really? Did you know migraines have been around for thousands of years? And all we had to do was blend kale/do a yoga pose/read your book all this time? How silly of us.
- “Militant Migraineurs.” Blog trollers, people who pick fights, bulliers. People who use angry rhetoric to prove their points. You’ll know them when you see them because you start to feel anxious or hostile when you read their writing and you aren’t sure why. Maybe they mean well, but I feel like I’ve already suffered too much to entertain one of their useless online fights.
- People looking to make a buck off of your health. This is the worst kind of social media in my opinion. It truly saddens me to see people trying to take advantage of us migraineurs this way. Some bloggers really do want to help you or find that connection. But if the moral of every article seems to be… “buy my book/product,” I tend to move on.
So, who should you follow? I think that’s up to you and what you’re looking for in terms of support for your health. But I do think it would help if we were all aware of each others’ blogs and social networks…
If you’d like, please post your blog, tumblr, or Twitter in the comments so we can better connect with each other! Who do you think is a “must follow” in the migraine/pain community?
Tomorrow, Tuesday 4/16/13, Victoria, from Migraine Monologues, is hosting the first annual migraine book club chat at 1 PM EST/ 6 PM UK time. Directions to enter are right here. I’m excited to participate!!! We tried to accommodate all of the UK, East Coast, Canadian, and West Coast readers, so please let us know what times would work best for you next time we do this! We will be talking about the book “Migraine” by Oliver Sacks.
- I haven’t finished reading it/bought it/read it at all! What should I do?
We’d love it if you still participated in our chat! I found this book to be more of a technical manual to guide us through our migraines. I think it would be important to sit on any migraineur’s bookshelf, so if you participate in the chat you might find that you want to pick it up later or or maybe you’ll even “meet” a new migraineur friend!
- How will you be discussing the book?
We are using a password protected chat room. You can find the directions to enter right here.
- When will the next book club meeting be?
The goal is to have a “meeting” every 2 months or so. We will probably discuss what book we would like to read for our next book club meeting. Any and all suggestions are welcome, but preferably something related to health or migraine!
Will you be joining us for the Migraine Monologues Book Club chat? What books would you like to discuss in the future?
Do you ever feel so inspired by reading someone’s blog post that you have to comment or send the link to someone you know? When I read this post by Ellen Schnakenberg on migraine.com, I instantly bookmarked it.
I am so grateful for this particular post because I also made the decision to become more open about my migraine disease. It wasn’t easy at first. I also lost a job and nearly died in a hospital because of migraine disease, which is particularly why I found this post to be so poignant.
I do tell people that I’m a migraine blogger but I wish I said it with more confidence and pride. Instead, I say it with almost some sort of shame, as if trying to connect to others regarding health concerns is a bad thing.
Ellen’s post reminds me of this article from Psychology Today called “5 Tough Choices You Face When Chronically Ill Or In Pain.” The first choice involves whether to be open about your disease or not. Some chronic pain bloggers don’t reveal much of their identity, maybe even giving themselves psuedonyms. I understand why they do this completely. It’s hard to talk about your health. Maybe there are also ramifications regarding someone’s employer or their spouse’s employer. For me, I feel like a failure sometimes, like there’s some sort of shame in not being in perfect health at age 27.
I always find it easier to read and relate to someone like Ellen who describes her daily struggles with her migraines. I never think “Oh how embarrassing that must be for her!” Instead, I think, “Yes! That was me! I went through that too!” I generally find articles written by people who don’t share as much to be a bit less compelling because they aren’t as raw as the writers who leave it all on the page.
I’m really thankful for my fellow bloggers who are willing to be so open about their experiences, and I’m so grateful to readers who say they can relate to what I write about. It helps me share more too. I shared this as a comment to Ellen’s post too.
How open are you about your migraine disease or chronic pain/illness? How much do you prefer to share about your health on social media forums? What did you think about the Migraine.com and Psychology Today articles?
[EDIT: 4/11/13: Some readers have noted that they are unable to find this app in the iPhone app store. I’m also having a hard time finding it. This is just one example of many free migraine journals that are out there. I also want to recommend the “Migraine Meter” and “Ubiqi Health Migraine Tracker.” Both are free, and unlike the one I discuss here, are not promoted by any particular pharmaceutical company. Thanks to those of you who pointed this out to me.]
When I first visited my neurologist, he wanted me to track all of my headaches and migraines, with as much detail as possible. In theory, this seemed like a smart way to make pain tangible. In practice, I found it actually painful to write down every detail of my migraines as I was experiencing them.
When I got my iPhone several years ago, one of the first things I searched for on the App Store was “migraine” and I found the “Migraine Notebook.” [Warning: for those skeptical of Big Pharma, it’s made by GlaxoSmithKline but it’s free and there are no ads for any GSK products.] There are plenty of other ones out there NOT made by Big Pharma but this one is customizable, has all the details my doctors want, and doesn’t require me giving them any additional money, so I guess I don’t really feel a lot of guilt about it. (I’m not getting paid or endorsed for this post.)
I’ll include a few pictures to give a better idea of what the app is like. It’s free so anyone can download it from the App Store!
- One really neat aspect of this app is how customizable it is. You can add any additional triggers, medications, and remedies.
- Start by noting where your pain is. I generally add “other” and make a note of either “right eye” or “left eye.”
- The only thing I don’t like about this app that other apps do better is the pain scale. This app only does it on a 0-3 whereas I am used to a 0-10 scale.
- Next, make a note of your symptoms.
- Then, write down which medications you used during this attack. You can see that I’ve customized this one a bit.
- Next, you can indicate different triggers, and this is also customizable.
- This is one of my favorite parts of the app. Here, you can indicate alternative non-medication related remedies that you tried for this particular migraine.
- You can also write additional notes related to this migraine and indicate to what severity the migraine impacted your day.
- My other favorite part of the app is “create my report” option. I will sometimes create reports of different time periods to compare how I’m doing. For example, when I’ve tried different elimination diets, it will give me a good idea of how well they are working. You can also e-mail this report directly to your doctor if you like.
I find it much easier to monitor my migraines using an iPhone than paper and pencil. This seems backwards since the screen should trigger me, right? But for some reason, since all of the information is in one place, and all I have to do is touch the option I want, I find it to be much easier and much less time consuming.
How do you monitor your migraines? What health apps do you use on your smartphone, iPhone, or iPad?
… I would help non-migraineurs realize that migraine means more than just having a headache.
… I would donate money to groups like Migraine Research Foundation in the US and Migraine Trust in the UK to help raise funds for the elusive migraine “cure.”
… I would pay off the medical bills of any migraineur who was denied health care coverage for having a pre-existing condition (migraines).
… I would be persistent in asking celebrity migraineurs with huge followings like Khloe Kardashian, Ben Affleck, or Serena Williams to own migraine disease and be a spokesperson for it.
… I would organize charity events like 5K’s to try to find a cure for migraines and not be afraid of the stigma I would face in trying to raise funds for something society does not see as a “problem.”
… I would give every newly diagnosed migraineur information that I wish I had known, a migraine survival kit, a blanket, and a kitten to help them through their hard times. Unless they’re allergic, then I’d just give them a stuffed animal kitten.
What would you do if money, time, and physical limitations were no object?
Start by joining the Health Activist Writer’s Month Challenge for April! I participated last year and it was a great way to keep raising awareness about migraines and to connect with other health activists. I have already signed up for this year!
Sign up (for free, of course) by clicking the link above. Wego Health will send you a prompt every day to get your creativity flowing and all you do is write a post for each day of April to your website! This helps raise awareness of your particular health cause and gets the community to know more about you as a blogger.
Even if you don’t have a blog, you can still participate! If you sign up, you can just do a post on your Facebook or Twitter page each day. Remember to use the hashtag #HAWMC and preface your post with Day 1, Day 2, etc. to help everyone else follow along!
Will you join the HAWMC this year? What health activist causes are important to you?