As a spoonie/migrainer/potsie/whatever else you want to call someone who deals with chronic health issues, it’s taken a whole lot of experimenting to know what coping mechanisms out there work best when it comes to the physical, emotional, & spiritual weight of dealing with the heavy burden of daily physical pain. Twelve years in, I’m STILL learning, but- I do know what I can’t currently live without.
Here’s what I’ve found to be absolutely necessary for thriving and surviving in the midst of daily suffering right now.
sleep
TBH- I wish this were different, but sleep is the absolute most important piece of the puzzle when it comes to managing my pain. If I get less than 8 hours of sleep, I’m certain to have high levels of pain upon a few hours of waking up. If I sleep a whole lot, as in up to 10/11 hours, I can usually get through the day without my pain becoming severe. This also applies to NAPS. Even if only 30minutes, an afternoon nap can be the difference between severe and low grade pain at the end of my day.
supplements
My Journey with supplements is an entirely different blog post, but the long-story-short is that I’ve spent years experimenting with every single supplement on the planet proven to help brain health. The two I’ve found to be most helpful in managing my pain and inflammation? Magnesium and Valerian Root.
One reason both of these are helpful is the mild sedative effect (or MAJOR if I take a lot–Magnesium hangovers are a regular thing in my life 😉 ) which helps ensure a good night’s sleep. But compared to other sleep aids, I’ve found each of these to have an impact on the severity of my pain.
I primarily consume each of these through supplement form, and as far as specific types and brands and all those influency things, I have found almost every kind I’ve tried to impact me similarly.
An alternative way of consuming Magnesium that’s easier on the stomach is also an Epsom salt bath, which in my experience- works wonders.
food
My relationship with food has been complicated to say the least, but paying attention to what foods make my pain better and/or worse has been a gamechanger for me. What bothers me became quite obvious as my body became increasingly sensitive (fun fun), and pretty much every possible headache trigger known to man applies to me, but this is also an area everyone is incredibly different. I’d encourage you to try an extended elimination diet in order to crack the code on what helps you feel your best.
I also have to say that this is not always helpful simply to let me know what foods to avoid (avoiding all the things is very HARD). But it does let me know what foods to lean into during a flare up, and for when I throw following my diet out the window–when I will need to up my rest, supplements, etc to counteract whatever I’ve consumed.
medication
This is my least favorite part of the list, but I gotta say, when I started working with a neurologist and got on a preventative medication (in my case, amitriptyline), it was a total gamechanger for me. I’ve fiddled with this dosage a zillion times over the years depending on what season I’m in, but have not yet found a way of surviving without taking it at all. When I got diagnosed with POTS in 2015, I also added a daily dosage of Propanolol to counteract my super spiked heart rate upon standing up. Just like the amitrip, I have also failed to find a better way to keep this spike from happening apart from taking this med (and believe me, I’ve tried).
I’d also be a major liar if I didn’t say taking abortive meds like Tylenol and Relpax don’t regularly get me through busy days and exposure to triggers.
exercise
Major deconditioning after avoiding movement for years in order to keep my pain down between activities led me to lose virtually all my neck (and the rest-of my body) strength, In addition to throwing tension headaches into the mix of causes of my head pain, I also soon learned the ways less muscle increases POTS symptoms, in the form of worsening my circulation and Tachycardia, leading to even worse headaches, heat tolerance, and overall weakness.
After a LOT of gradual work on reversing this, I’ve now found some form of movement every day to be essential. At this point, this ranges from a couple 30-second strength training poses, to playing soccer.
Movement also really helps me sleep, and as a sporty-girl at heart, even in the throngs of a migraine attack, I also just think it’s fun. 🙂
frequent crying
I’m one that has to remind myself to do this, but breaking down with someone close to me while being brutally honest about my current pain level leaves me feeling less alone, and can be an incredible source of strength.
socializing
Full stop- I hear you when you say that doing anything to do with other human beings sounds absolutely insane. And it has limits. If I’m in severe pain, actually leaving the house to drive myself anywhere can be straight up dangerous and lead to stupid mistakes (I might be really good at losing important things). Holding conversations can also end pretty badly (the awkwardness is at another level while in a flare).
BUT, when done within my limits, I am consistently amazed at how much of a gamechanger for my mental health simply being in the presence of other humans can be when I’m not doing well. Whether it be in the form of sitting on the couch with a roommate, my sister’s kitchen while she tells me about her week, or attending an event that those same roommates or family members give me a ride to and provide me an escape from when I need it…I cannot count the number of times I’ve been spiraling and genuine connection has reminded me it’s not so bad
coconut oil
I actually believe coconut oil is the answer to all things. Need a natural makeup remover or moisturizer or way to deal with skin that’s really itchy and inflamed? Struggling to eat fish or vegetables your body needs but you really don’t enjoy eating? Or a way to make your morning coffee more fluffy and fulfilling? This naturally fatty and (IMO) tasty substance won’t let you down. *ps, in my case this has not caused any cholesterol problems (I promise you I get it checked regularly due to this devotion of mine)
music
when I need to make a drive or clean my house or write or doing literally anything productive when I’m really struggling, cranking some 90s pop or a musical soundtrack (both of which I’m a sucker for), can literally carry me. Well done praise and worship also can have the same effect when I’m really struggling to pray.
service
I KNOW. This is another that feels like the absolute last thing you feel like doing when you’re not in a good place. But whether it be through aunthood duties or work I love or putting on a picnic, service genuinely carries me. It’s another way of taking the focus off myself and allows me to tap into a passion that is greater than my pain (praise God).
prayer
I’m not going to say this is always easy in the midst of pain, and it often looks like sheer wrestling with God. But at the end of the day, knowing Jesus knows my pain and is with me in it & is somehow always healing (physical,spiritual, emotional, etc.), is what grounds me in the midst of every mess and creates a genuine desire to keep on living.
