Y’all…WRITERS BLOCK. 👀 Not sure if it’s because it’s finally beautiful outside and I desperately wish I was at the beach 😎, or maybe Spring Fever is creeping in, but the brain fog is level 10. I do have a funny video from Instagram to share with those of you who are veteran chronic illness patients, but it has two cursies so you’ve been warned. (The cursies are only written on the screen (not out loud) and it’s only funny if you have your volume on.) It’s from one of my favorite chronic illness content creators.
I guess since nothing else is coming to mind I’ll share another update on my last update. First things first, the flare of 2020 has mostly lifted. Somewhere along the way I accepted a declined baseline and so here I am, the best of the best. After the update post two weeks ago, I went to the cardiologist once I had the strength to deal with the appointment. Funny, not funny, thing about MECFS flares, too sick to go to the Dr. She said the plunging/spiking heart rate is just POTS and I’m going to try midodrine again, she’s put in an order for the little heart monitor buddy that sticks with you for a couple weeks for the irregular rate on my BP cuff and that should come in the mail soon, and as far as my oxygen dipping down into the 70s with any exertion that’s just to be expected with chronic illness. Basically, when I flare the signals from my brain to my heart seem to really go wonky, and that’s the norm (for me). Feel free to message me or comment if you want to share you experience or advice on any of that. I welcome other people’s experiences as these diagnoses seem to be better understood by the people that have them. I hate to say this but in my personal experience nearly all of the best advice I have received hasn’t come from health care professionals. I totally get people not wanting unsolicited advice and when it comes to healthy people telling me about their aunt’s sister’s neighbor’s mushroom potion cured someone I feel the same way, HOWEVER when I know someone else has the same illness I 100% want to hear what you have to say because I know you have firsthand experience. So that’s it out of me for today.
Hoping today has been kind to you! If you’re looking for something good to watch and you have any interest on the development of human babies, there’s a six-part series on Netflix right now that’s really fascinating called Babies. A few more doodles below. Thank you for stopping in today and sorry for the pointless post. Hopefully next week I’ll actually have something to say.😬
Good to hear from you 🙂
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😊 Thank you for stopping in! Hopefully I’ll find some words by next week. 😋
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“not wanting unsolicited advice and when it comes to healthy people telling me about their aunt’s sister’s neighbor’s mushroom potion cured someone”……….oh my goodness, when I read this I literally laughed out loud. 🙂 thank you for the laugh and I really hope someone will be able to give you helpful advice!
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Glad to see you had a chuckle! One of those things only a chronically ill person can feel in their soul. 😂
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so very true……….I have heard stupid things like this before and it makes me crazy……
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An update definitely counts as content, Mishka, and considering how you’ve been feeling I think you did great putting this post together. I’m glad you were able to get to the cardiologist and get a little reassurance about the HR being POTS-related. The monitor buddy sounds like a good idea. When do you start back on the Midodrine? Fingers crossed for that, too. I have low blood pressure and when flaring I think this gets lower (it certainly has when in hospital, too) and I do notice extra irregularity with heart rate, a little more skipping though I think most of mine previously was due to inhalers as it’s reduced since changing to a different one. I’ve never been tested for POTS so as far as I’m aware I don’t have it, meaning I’m afraid I’ve got zero useful experiences or suggestions to offer. However, there is this great mushroom potion…! 😉
I love that little toadstool, so sweet 😊
Take good care of yourself lovely. Rest up, enjoy Netflix, try not to worry about things that you don’t feel up to doing lately just take care of YOU ♥ xxxx
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Ah yes the magic mushroom potion. 😁 Sadly it was actually a true recommendation. Sigh. 🤦🏻♀️
Thank you for sharing your experiences, it helps to know I’m not the only one. My BP cuff, which is used by others in the house too, has recently been showing irregular heartbeat for me, and that’s a new result (didn’t even know it was so fancy 😁). So hopefully the monitor will help answer what’s going on. The midodrine I’ll start this weekend, wanted to make sure I wasn’t alone in case of a reaction. And yes, taking good care. Now I’m watching The Great British Bake-off. I don’t usually watch cooking shows but wow so much talent!!
Hoping you’re doing as best as possible! Thank you again for sharing. 💖
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I love the tea doodle Mishka!
With FM/CFS I experience fluctuations in blood pressure & irregular heart beats too especially in a flare cycle.
I normally have low blood pressure anyhow with Hashimoto’s disease but I can get quite light headed when I stand up or get out of bed in any FM cycle…
I find standing still leaning on the bed or wall & waiting a minute or two until the light headedness passes works.
I have no idea if my oxygen saturation drops in a flare as haven’t been tested for that. Lol!
So, no real advice there! Sorry.
Blessings,
Jennifer
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Thank you for sharing your experience 💜 Yes low BP here too. Lots of leaning and slow rising. That I’m used to, it’s the BP cuff reading irregular heartbeat that gave me cause for concern but hopefully the monitor will answer some part of that. I’m sorry you too are dealing with FM. Hopefully someday, soon, they’ll get it figured out. So many people with so many similar symptoms, you’d think it’d be easier to pinpoint what’s going on but we wait… Wishing you a lovely Autumn! 🍂
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Thank you Mishka! It’s a beautiful Autumn day here today too! 😀
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