I am a person who suffers from chronic migraine attacks. They are random and extremely painful. I also suffer from bouts of depression, anxiety, and insomnia.
But lately, I am trying to move past those labels and live the best life I can live.
I am trying to focus on “healing” instead of “pain”, which is very tricky for someone who has been so focused on “pain avoidance.” I am adding in more tools for de-stressing. I try to do good things for myself with the purpose and intention of “this will calm me down” or “this will make me happy.”
I used to spend a LOT of free time researching migraines. Now I try to spend less time on research in general. And when I do research, I try to look up positive articles, like “re-wiring my nervous system.”
I am trying to avoid the trap of paranoia, worrying that every headache will turn into a migraine. I pop the pills I need to take, and then I find a good distraction.
I am trying to take care of myself on my good days, and spend less time worrying about the black holes of time I miss when I have bad days.
Am I still in the habit of berating myself for not being normal? Not as much. I am more accepting of my condition and its limitations. I am trying not to get as frustrated when I miss out or have to cancel plans. This condition does not make me a bad person. Sometimes I feel like one, because I am not reliable like I wish I could be. Just because I have certain (really negative) thoughts in my brain doesn’t mean they are true.
I’ve been going through the ups and downs of this roller-coaster life. Sometimes it’s hard to write in this blog because of the dramatic emotional changes that occur constantly. I’ve had moments of feeling “normal” that make me SO elated and blissful, and I want to write in this blog, “OMG, I AM DOING AMAZING! 🙂 ” …which is soon followed by pain and depression and negative thoughts like, “OMG, I CAN’T STAND BEING ALIVE WITH THIS TORTUROUS PAIN ANYMORE!”
Feelings are temporary, and knowing that is comforting. I enjoy the good moments while I can, and when I am in a bad moment, I know that I will feel good again.
What is it about a seemingly innocent suggestion from a “concerned” family member who just wants to “help” that can send me into a spiral of guilt, self-loathing, and tears?
I imagine I am not the only one to experience this.
I’ve read tons of articles about how to prevent migraines. I’m sure you’ve heard these tidbits before too. I sigh with relief when one doesn’t apply to me. “Quit smoking cigarettes”… well, I’ve never smoked cigarettes ever in my life, so SWEET! Done and done! “Maintain a healthy weight”… okay, cool, I’ve been doing that for my whole life, so SWEET! Done and done!
Sometimes, a suggestion hits too close to home…
“Maintain a consistent sleep schedule. Go to bed at a decent hour, and figure out your magic number of hours of sleep, like 7 or 8, and stick to it.”
I’ve had insomnia my entire life, and I have SO much anxiety surrounding bedtime. I wish I was a better sleeper, but it is truly difficult for me.
So when a “concerned” family member points out this fact to me for the MILLIONTH time, what did I do? I said that “it’s hard for me, but I guess I could try.” And then I locked myself in my room and cried and spiraled into that guilt/self-loathing pit.
I have no idea how the f*ck do that. And this person wants me to control the very thing that has eluded me my whole life? And is basically blaming the fact that I am in horrible pain right now (and for the last 15 years, up and down) on something that they are basically saying is my fault?
And one of the worst parts of it all? … They could be right.
I don’t know what to do. Try harder, I guess? See a sleep psychologist? I don’t know.
In too much pain to play this game right now.
P.S. My vacation was GREAT! Much too short…and I only had a couple of attacks, that were managed well with pain medication.
I am learning a valuable lesson about life right now: How to accept myself and be the real me. I think I still spend too much energy trying to be “normal” and like everyone else. People-pleasing doesn’t do me any good. And it doesn’t help the people around me either. It’s no wonder that people can’t understand my chronic pain situation– I don’t speak up enough!
So okay, I have to try to face the facts: I have a disability, but that doesn’t make me a “sick person.” I have chronic migraines.
What else does that entail, besides torturous head pain?
Sometimes I am sensitive to noise and light.
Sometimes I am in a brain fog or I am forgetful. I may ask you the same questions over and over again because the answers aren’t sticking.
Maybe for me, going to bed at 1 or 2 am and sleeping in is how I function at my best. Maybe I’m not one of those people that can wake up super early and go to bed super early. Maybe forcing an unnatural sleep schedule is actually making my migraines worse.
So yes, right now I have to focus on my health more than some other 27-year-olds. I am more high-maintenance when it comes to self care, but that’s okay! Especially if it will help me function better.
I’m reading books about calming my anxiety, which helps too. I try to focus on deep breathing throughout my day, and relaxing any tense muscles.
I also think it helps making fun plans for the week… but also being honest and feeling able to speak up when I need to cancel!!!!
And lastly, I have to remember that getting better is also about feeling better about myself, with or without a headache. It’s about taking care of myself and self-endorsing when I do things that are good for me. I can’t control the results.
My phrase of the day:
**Don’t be depressed about the things you can’t change or control.**
It’s better to be proactive about the things I CAN change and I CAN control.
The good streaks always come to an end. I let them trick me again. I told myself not to get my hopes up, but optimism got the best of me. It fooled me. And I’m feeling very low right now.
My low-pain streak lasted a whole 10 days. INSANE, right?! I almost started to feel like a normal person, and not a chronic migraineur. I thought, “OOH, maybe I can have a life after migraines…”
But now I’ve had many days of relentless, seemingly-endless migraine head pain. Back to being horribly and unbearably tortured.
Before my good steak, I thought I was getting close to accepting life as a disabled migraine sufferer… but then I had a good 10 day break from that life… and now…
I HATE THIS SO MUCH.
IT’S NOT FAIR.
I’m grateful for those blissful moments without migraine head pain. But when I start feeling so high on NORMALCY, it makes the crash back to Migraine reality even HARDER. Of course I’d rather have some good moments than none at all. But here I am, feeling super depressed again. Such a roller-coaster.
My sleep hasn’t been good this week. My stress levels have been high. The holidays are usually a nice time, except this is my first holiday season without my Mom. She was the best at getting everyone in the Spirit– baking her famous cookies, cooking delicious meals, and picking out the *best* presents.
So where do I go from here? I have to be honest with myself and those around me. I’ll try to take care of myself as best I can and cheer myself up. I know I can make it through this low point. Holding onto hope for more good days…