Recently, one of our patient advocates shared an emotional video of her venting to the community her frustrating morning with migraine. While it is great to try to be as positive as possible, everyone needs time every once in a while to just let out their negativity. In response to the candid thoughts in the video, we prompted the community to take a moment and vent together. Here are some of your heartfelt stories and struggles that we wanted to share.
“I would have to say that I miss out on a lot of extended family functions. I can deal with the pain, because it is most of the time, but lights, talking, and some smells are too much and I can’t attend a family get together. I am so tired of missing events, missed a wedding a few weeks ago, and also missed some work. Today, I am trying to relax and take some of my other meds so this one will go away and I can go to Thanksgiving dinner”
“On the really bad days, I start to panic. I start thinking this is never going to end, I’m going to get another one tomorrow, the day after tomorrow, the day after that, and so on. I don’t have a life anymore; it’s completely dictated by migraines. I don’t go out, I don’t have friends, they got tired of asking me to do things and me canceling because the migraine was too bad. On the really bad days, I think even death would be better than this no life I live”
“I’m sick of listening to myself complain. Can only imagine how my husband and others feel. I honestly feel like a burden and I wouldn’t want to be around me. I’m having trouble seeing the good or happiness in anything. Just over it. Over trying meds that make you feel like crud, procedures that only make it worse. Was always the one who told people and myself to look at the positives and now I only see negatives”
“Thanks for the space to vent – I’m tired of it all too today. I’m tired of the war between feeling lazy while resting and feeling miserable while pushing through. I’m tired of the daily migraines that never quite get to zero, of apologizing for missing things, of maintaining hope when so many treatments have failed, of being strong when I’d rather be in bed, of trying to differentiate between migraine fatigue and depression fatigue. I’m so close to finishing my master’s degree but migraine makes it all so incredibly hard. I’ll go back to being my optimistic, driven self tomorrow. Thanks for the reminder to really experience and acknowledge our suffering instead of skipping past it and trying to fix it right away, I actually do feel a tad better now. Hang in there everyone!”
“I started back to work part time after being on leave and had two good days only to be hit with this week-long migraine. I wish my co-workers knew I’d give anything to be back there, to have my personal AND professional life back. I’m trying. My life is so small right now. No one would want this”
“There’s so much I could write about the utter frustration of a lifetime of migraine, but I think what’s bothering me most right now is the utter lack of comprehension and understanding of the majority, not just the society generally, but even (ex) close friends, relatives and doctors. The only doctor I ever saw who really ‘got it’ had severe chronic migraine herself and so did her kids”
“I live in perpetual fear every day, never knowing if it will be stolen by a migraine. I fear going to events because I don’t know if I can follow through the whole thing without getting a migraine. Every morning, I wake up and ask myself if I feel a migraine coming on. I never know when I’ll be attacked by this lurking monster”
Venting can be so healthy in moderation, so continue to share your much-needed vents with us as the time comes when you need to just let it all out. Please remember, you are not alone. Our community is a safe, caring, helpful, and receptive place for your struggles, and we all want to help in any way we can. Also, if things seem to ever get to overwhelming, take a look at some of the resources listed within this article which lists many other supportive outlets.