One to the blessings of social media, when living with a chronic illness, is the ability to learn what tools other people are using to live their best life with their disability. In the spirit of ‘sharing what’s worked for me but might not work for you as we are all different’, I’m going to just list in alpha order some of the things I’ve found most helpful. Feel free to share yours in the comments.
B12 (Jarrow Methyl Sublingual) – These little tablets are one of the very few things my body doesn’t adversely react to. They get my levels up from below normal to low normal, and that’s good enough for me. The thought of getting regular shots (recommended by several doctors) eeks me out, so this is my substitute to deal with low B12 and MTHFR.
Aspirin (Low Dose Chewable Bayer) – Can’t explain it, was told it’s likely placebo by a Dr, but for some reason these help with lite pain. Heavier pain would likely take a frying pan upside the head, but these little things help. I read an article recently that said the reason people might respond so well to aspirin with MECFS is that MECFS causes brain inflammation, which this reduces. Even Harvard lists Aspirin under CFS.
Cane – Definite love / hate relationship with ‘McCane’. Love the balance it provides and hate that I have to use it or I look like a weeble wobble. My vestibular system is a
hot, hot mess these days and this really helps just keep me upright.
Chamomile tea (Traditional Medicinals) – I’m telling you if you want to calm your central nervous system give this a try. I am extremely sensitive to seemingly life-in-general at this point, but this stuff feels like settling into a warm bath for me.
Coconut water – Tried this out of thirst one day (previously didn’t like it) and ended up immediately seeing results, and enjoying the taste. Now if I miss a day, like today, my mouth feels like the Sahara desert. Not sure if MECFS, FM, or POTS, whatever it is, coconut water helps quench the desert!
CVS Max strength Antacid & Anti-Gas – I’ve been taking this for decades (originally it was Maalox) but with the worsening stomach issues over the past five years this stuff has been so helpful. I will say this – it blocks the absorption of B12, soooo you can’t eat it like it’s candy.
Fitbit heart rate and sleep monitor -Monitoring my heart rate and deep sleep percentages has given me so much insight and understanding into what is going on with my body. Learning that those odd symptoms I was having were simultaneous to lowering and raising heart rates and deep sleep amounts was like a lightbulb going off. I finally knew my body was reacting for whatever reason and it wasn’t all in my head. It was empowering to know that. Also, it helps me pace everyday to stay in a my best heart range to avoid PEM best as possible. If I hear the word deconditioned one more time 😳… the FACT is on my bad MECFS days my heart rate is crazy out of control, and on the more baseline days, it’s steadier, that has NOTHING, nope not one thing, to do with conditioning.
Himalayan salt (Trader Joes) – Another surprise find. Tried it, couldn’t believe how much better I enjoy the taste and also, how much it helped! When I don’t use it daily the POTS gets worse. That’s about the depth of my knowledge there. I was told by a Dr “salt is salt”, …maybe it is, maybe it isn’t.
Shower chair – So, so helpful and my Dr ordered it so insurance paid. Highly recommend, especially for those of you without a bathtub.
The Mindful Path to Self-Compassion – I’ve talked about this book before. I love it. I didn’t even read the whole thing because my retention is about as good as a hamster drinking redbull but the parts I needed to read I did, and they have stuck with me. Long story short: I had no self-compassion when I first got sick, putting everyone else before myself, this book taught me how to add better balance, as well as how to be totally okay with insomnia. It’s a keeper.
Wheelchair (transport style) – As much as I fought the idea of needing the chair, I’m thankful I finally cut myself some slack (see above) and got it. It helps me get to doctor’s appointments, but it’s also helped me do some other things that I’m very thankful for. I don’t have the strength or stamina to push the wheels of a wheelchair, the transport chair requires someone to push me (which is no walk in the park), and it also causes next level neck pain, which is slightly lessened with a desk chair cushion. So, some day when I’m able I hope to get a fitted, motorized chair.
So that’s it folks, a quick rundown. I’m sure I’m leaving things out, like my nutribullet for when you don’t have the energy to cook and then chew all the food. I’d love to hear if you have any things you stumbled across that are super helpful. Thanks for poppin’ in today! A few more doodles below as I continue to follow along with world watercolor group on Instagram. Hoping this week is kind to you and if you are in the Midwestern or Eastern US, stay safe and bundled up, actually no matter where you are stay safe and cozy.🌸