A Few Things that have Helped me Live my Best Life, Alongside Chronic Illness

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.🌸

 

 

19 thoughts on “A Few Things that have Helped me Live my Best Life, Alongside Chronic Illness

  1. I love camomile tea. My b12 is in low range as is vitiman d but they are focused on bringing up my iron mostly. (Prescription d at 100 000 iu a week to keep.me above min nada for b12 (yet) with my stomach issues ive caved and use pepto its hit or miss…as an amputee ive had a wheelchair (when needed) for 25 years and shower chair recently as i dont have the energy and strength to get myself in and out on one leg. anymore. Glad to have the online community like yourself to help my days feel a little less darker

    Liked by 1 person

      1. The snow is pretty….from.inside! Temp intolerance im wondering if thats a symptom.and yet another thing i have! Ive always been allergic to the cold since childhood..passed it on to a few of my kids. I get terrible hives, itchy burning sensations, and sleepiness. When i first started getting sick i would get cold spells out of the blue were id shake to my core (in the house out of the blue) then a few years ago the opposite occured, i get so hot out of the blue like i am on fire,even my eyes burn. I get what looks like the lupus rash leading to testing for it and menopause…twice..always negative! Summer temps trigger extreme sweating (which ive never had) so i mostly go out in the evening only. How is the temp thing go for you?

        Liked by 1 person

      2. My son was allergic too (hives) but he grew out of it. I have a very small comfort range, maybe 65-75. Too cold and it causes stabbing pain and an icy feeling that I can’t shake without a bunch of clothes n covers, and a heating pad. Too hot and the normal (since I’ve been sick) pressure in my head skyrockets. It feels like a vice, it’s painful. My face puffs up, my cheeks turn red, I get super irritable and I can become disoriented. It’s very uncomfortable. I think it’s because CFS causes brain inflammation and the body knows that overheating is bad. I know some CFS people (not overheated) have some comfort with head ice packs.

        It’s okay where I live as the weather stays pretty even but on those off days I’m a mess. I’m sorry you deal with it too, it’s frustrating to not be able to enjoy the sunshine on beautiful days and the snow flakes on the wintry ones. Hoping you’re warm n cozy today.

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      3. I am the same when i get a cold spell under piles of blankets and clothes and im still chattering (literly). The first few times i swore i had a high fever but nope..thanks for sharing with me your experience. No fun a lot of us go thru such simular experiences

        Liked by 1 person

  2. Deconditioning is one word I don’t want to hear for the rest of my life. Explain again how deconditioning made me go overnight from someone who walked/biked everywhere, did at least an hour yoga and weight lifting every day, to someone who couldn’t walk 5 minutes without collapsing. Hmph.

    Liked by 1 person

    1. Exactly. So many of us have the same exact experience, and yet the misdiagnosis continue to be rampant. My decline was overnight. My first stress test (at about two months ill) on the treadmill, where I lasted less than two minutes, says deconditioned. I didn’t have a diagnosis yet or have any idea what was wrong or I would have made a fuss about it.

      Thank you for stopping in for a read. Hoping it’s not getting too hot yet for you. 🌸

      Liked by 1 person

    1. Hi, The one I take is Jarrow Formulas® Methyl B-12 1000mcg. It was recommended by a couple people. As far as the shower chair, It really helps with the blood pooling from pots if I keep my feet up. It’s a glamorous life I tell ya. 😉 And yes, an excellent way to warm up! 😊 Hoping today is kind to you 🌸

      Liked by 1 person

  3. Great suggestions! I also go for my gel eye mask that’s in the freezer for migraines (along with prescription meds), magnesium liquid, Voltarol muscle/joint rub. I’ve not tried coconut water, will have to give it a go one day! I’ve not tried those fitness tracker watches either, but I am curious. More so since getting racing heartrates and more palpitations. Will have to investigate a little more as I’m including them in my upcoming Gift Guide post. Would you recommend the regular Fitbit? I wonder what the cheaper brands are like..I’d like one that’s not too big as my wrist is pretty small!
    I hope you have a relaxing weekend, Mishka  ♥ xx

    Liked by 1 person

    1. Those are great tips! I’ve thought about getting magnesium spray. Do you find the liquid helpful? I have the Fitbit charge 2, which I love, but…the charge 3 can be warn in the shower, mine cannot. So that’s a bummer because I know my heart’s doing wonky things but I can’t see what. Fitbit does have a small band, my friend is petite and hers seems fine. They also sell so many replacement bands on amazon. There are much fancier and adored monitors in the pots groups but mine works just fine for me. There’s a whole different set of numbers people monitor, can’t remember what, and mine doesn’t do that. Thank you for the comment and hoping your weekend is relaxing too! 🌸

      Liked by 1 person

      1. Thank you for the thoughts on the fitness trackers! I started looking at them last night after your post – ended up adding a few to my Amazon basket to have a look at 😂I also saw an Honor 5 band which is a lot cheaper but gets good reviews and monitors heartrate, think that’s waterproof/resistant. It’s a shame yours can’t be worn in the shower so you can see what’s happening when you’re standing up in there. Maybe there’s a way of tying a plastic bag around your wrist..? 😉
        I personally find liquid magnesium more tolerable and more convenient. I use the Floradix stuff (https://invisiblyme.com/2019/03/20/floradix-magnesium/) but there is the BetterYou spray magnesium that a lot of people prefer (https://invisiblyme.com/2019/04/07/betteryoureviewed/). I think it’s personal preference. I just like the convenience of drinking a ‘shot’ of it from the fridge.
        Caz xx

        Liked by 1 person

  4. Thank you for sharing this with us, I have B12 jabs every 12 weeks, I’m not going to lie and say they don’t hurt, some do and some don’t. Having mobility aids are an absolute gamechanger!

    Liked by 1 person

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