Life can a downright battle. Fighting your body every second of the day is difficult enough, but how do you get through a work day when all you want to do is collapse?
Very carefully, that’s how. The past five or so years since my diagnosis with Arnold Chiari Malformation Type I have led me to experiment with different methods in the hopes of finding relief. None of these tips unfortunately lead to some magical cure-all at the end of a bright, sparkly rainbow, they might help you get through a flare, though. Caregivers and awesome friends, put these suggestions in your back pocket (or care package!) for a rainy day.
*Disclaimer: I’m not a doctor. What works for one person won’t necessarily work for another. Just keep that in mind!
It might sound like a no brainer, but drinking water is important. Most of us have grasped this concept, but my neurologist suggested adding Gatorade into the mix. I’m telling you, this is probably the most helpful advice I’ve ever received from a doctor. I carry the single serving powder mixes with me, but you can drink it straight from the bottle, even freeze it as ice cubes (genius!).
For those with fibromyalgia, I also add a couple drops of liquid B12 to my water bottle before I leave for the day. This is something I’ve slacked off a bit on, but two flares back to back have me back on it.
Heat or Ice
From all the discussion I’ve had with other spoonies, it seems either heat or ice will help, but not both. Ice, for instance, makes my pain worse. But, a hot shower can relieve some of the pressure in my head so fast I’ve almost passed out in my shower. Unfortunately, showers and heat pads aren’t really conducive for a fast-paced library. That is where hand warmers come in! You can sew them or glue them, but these little packets of beans are very handy (get it!?). Pop these suckers in the microwave, and boom, instant travel sized heating pad. If cold is helpful, I would find a gel ice pack and make a cover for it in the same way the hand warmers are made. Put the pack in the freezer and keep the cover with you.
Protein and carbs, people. Taking my emergency migraine medicine makes me sick, so if I have to take it, I have to eat something with it. But, if I have a migraine, I’m usually nauseated, so eating can be tricky. I love the Kashi chewy granola bars; the dark almond mocha. Fig Newton bars are also a good one to carry. If you’re not the granola type, breakfast shakes can be incredibly helpful. Carnation Breakfast shakes are constantly on my grocery list. The whole point, though, is to keep your energy up. Caffeine is in most migraine medication, but living off it
like I do just means you are prolonging the crash that will inevitably happen. Snacks=not passing out.
Watching the weather can alert me to high pressure, but for the most part, I never know when I’m going to go through a flare. That’s why routines are important. My morning always involves making coffee and feeding my chunky cats. I check my planner to see what I need to do before work, then drink my coffee and shower. Then, when I get home in the evening, I change into my PJs, talk with Husband when he wakes up, we eat, then I check my planner to see what I didn’t get accomplished yesterday (the #ListersGottaList challenge, for example). If I didn’t have a routine, every day would be unknowable and unplannable. Having the ability to plan meetings and programs at work tells me I might want to make sure I have emergency meds in my bag for that week, or I definitely need to carry more granola bars that day. My routine is the only thing that saves me sometimes!
By relax, I don’t mean sit with book catalogs and write out purchase orders. That’s work. You have to find something that you like to do. Visit your local public library and grab some books or graphic novels, rent some movies, or pick up a hobby. For me, decorating my planner is my zen, along with embroidery. Neither of these hobbies are very demanding in terms of physical output. But, there are nights where my hands go numb and I can’t do either of my favorite hobbies. What then? Then, I read, scroll through Pinterest, and snuggle with my cats. Sometimes, a chronic illness diagnosis means all of your hobbies go out the window. The Unbroken Smile has eleven activity suggestions for chronically ill, and The Chronic Illness Diary of a Young Adult talks about how the diagnosis impacted that bloggers hobbies.
Remember, no two sufferers ever have the exact same experience. What works for me might not help you in the same way. But, I have found most spoonies to be investigators; we search high and low for anything new we haven’t tried. Except the all kale diet. I’m not doing that.
How do you cope with your illness? Leave me a note in the comments!
Have a great day with lots and lots of spoons!