Articles, Blog

My Chronic Illness Essentials // Dysautonomia Awareness Month

December 28, 2019

Hello and welcome to today’s video if
you’re new here my name is Meredith and this is a channel about living life with and
beyond a chronic illness. So today in honor of Dysautonomia Awareness Month
I’m going to be showing you all of my chronic illness essentials so these are
gonna be all the items that helped me feel better
physically and emotionally when my pots is getting the best of me.
So my first essential that I’m going to show you is my water bottle and this is
absolutely an essential for me because when you have dysautonomia it’s
important that you’re getting almost twice as much water as the average
person. So going off of the hydration theme the next chronic illness essential
that I want to share with you is an electrolyte beverage now brand doesn’t
really matter as long as you’re getting your electrolytes
these are Nuun tablets, they go in water and create an electrolyte beverage. I
haven’t tried these yet but I’m pretty excited to. I am currently in the midst
of trying to find the perfect electrolyte beverage for me and I’m
gonna try a bunch of different electrolyte beverages out and make a
video about my favorites and my least favorites and if you have any
recommendations for that definitely leave them in the comments below I would
love to try them and let you guys know what I think! My next chronic illness
essential is my blood pressure monitor and this is my personal blood pressure
monitor that I keep at home it comes in a nifty case and I just you know put it
on my arm and it gives me a blood pressure reading, um you know, you don’t have a stethoscope or anything it does it all for you so I definitely recommend
having one of these around if you’re someone who has POTS or another form of Dysautonomia and your blood pressure is something that you’re always a little
worried about. This is my medical ID which I consider to be absolutely
chronic illness essential. It says my name and it says my diagnosis’s on the
back of it, that way if I were ever to pass out somewhere,
medical personnel will be able to know what’s wrong with me and that I pass out
quite frequently. On the back of my medical ID it says a parenthesis wallet
card and that will lead them to knowing all sorts of information that’s on this
wallet card like my medical conditions, my allergies, medications and because, you
know, I’m on too many medications to list on here with my diagnosis’s, it’s
important that I have this card that lets them know all of that sort of
information and so I have a few different color bands I have a white one
a very light kind of ballet pink one and I also have a green one and so when I
get kind of sick of this one instead of having to buy a whole new medical ID
what I can do is I can just switch out the band to suit my moods so I don’t
always have to buy a new medical ID every time I’d get kind of bored of the
style of my medical ID which is what I really love about this style in addition
to the fact that it is… *sirens in background* ooo someone hopefully is wearing a medical ID. It’s
also waterproof which is great. I don’t don’t worry about it getting messed up
every time I wash my hands and because it’s rubber it’s super comfortable and
doesn’t get caught in anything while I’m dancing or performing during rehearsal.
My next chronic illness essential is my wheelchair and my wheelchair is
something that I have implemented into my daily life, with the chronic
illness for about three years now I use it pretty much whenever I am outside of
the house. It’s really allowed me to have a lot more freedom, um, I can do so many
more things now that I have a wheelchair whereas I used to not really be able to
get at the house very much, now I can get out of the house
and go grocery shopping or do the things that I have to do and I’m also able to
perform because of my wheelchair. My wheelchair specifically is a colors
wheelchair and it’s a custom rigid frame wheelchair. It’s set up to be as light as
possible to eliminate any fatigue that I might experience from my POTS. It’s also
meant to be a little tippy so that I can do wheelies and maneuver my wheelchair
very easily which helps it be more conducive to dancing which is something
that’s really important to me. So in addition to having a manual wheelchair,
I also have a power assist, specifically I have a smart drive which I absolutely
love and the reason I chose this kind of power assist
because I love the fact that when I’m having a great day and I don’t need it I
can take it off of my wheelchair but if I know I’m going to be out all day and
I’m going to be using a lot of energy or going up a lot of hills, I just hook this
onto the back of my wheelchair. So basically how it works is that I have a
wristband and I turned this on I turn this on and I will hit it twice on my
wheel and that will make it go and when it’s at the speed that I desire I tap it
again and it will continue moving at that speed. You can kind of think of a
power assist not being an electric wheelchair but rather being cruise
control for your wheelchair. So these I’ve shared in my travel tips video but
I think they’re worth sharing again. These are called seed bands and
basically they press on pressure points on your wrist and help alleviate nausea
and this is really great for car sickness as well as just any nausea you
might experience some side effects or just as a symptom. I try to use these as
opposed to maybe taking some sort of medication because who wants to take
extra medication when you don’t have to so this is always kind
of like my first line of defense. Speaking of nausea, my second line
defense is always some ginger tea and I like ginger tea whenever I am having any
sort of digestive issues because it really helps alleviate some of my nausea,
which is always good, and then if neither of those work I bring out my heating pad
and my heating pad I got at first and didn’t think I’d use it all that often
but it has absolutely become essential in my day to day life. I use it whenever
I am having any sort of digestive issues I just laid down and put it over my
stomach. I also use it when my muscles are tight and sore. This one I love
because it is long. I definitely recommend getting a long one over just a
smaller one I like you because if I’m laying on my side I can cover my stomach
and I can get my back too at the same time if my back is sore and my stomach’s
not feeling good, I don’t know, I like it for that or I can lay down on top of it
and it, this is, you know, the length of my entire back. This has four
different heat settings and it also has an automatic shut off after two hours so
it doesn’t cause a fire or anything like that. So definitely make sure you’re
getting one that has an automatic shutoff because trust me you’ll just
like burn up if you fall asleep with it on or something like that it’s no good.
So if you’re gonna get a heating pad I definitely recommend getting a long one
and getting one with an automatic shutoff, and you’re just, you
don’t know what you’re missing out on if you don’t have one because they’re just
great, they’re just great. Thank you so much for watching today’s video. I hope
that you’ve enjoyed this month of Dysautonomia Awareness videos. I know
that I’ve loved curating a month’s worth of awareness content for you. If you’ve
enjoyed it definitely let me know by giving this video a
thumbs up and letting me know in the comments below either which video was
your favorite or future Dysautonomia content that you want to see if you
haven’t already definitely hit the little red button and subscribe because
I’m going to be making lots more Dysautonomia videos in the future. I
hope you have a great rest of your Dysautonomia Awareness Month. I’ll see
you next week! *”Echos” by St. Nothing plays*


  • Reply McKenzie P October 29, 2017 at 4:49 pm

    Hey! I was diagnosed with dysautonomia a few months ago and I wanted to suggest pickle juice as an electrolyte beverage. It’s really daunting at first but honestly when it’s cold it’s not bad! I’m used to it now. I drink it every day and it has really helped me. I drink different amounts depending on the amount of energy I am about to expend. Thank you so much for posting videos! I’d love to see more of your content!!! It’s hard to find people with dysautonomia!!! I am seeing a specialist in January!

  • Reply Claudia H. Blanton November 3, 2017 at 2:40 am

    hon, where did you get that shirt from? I love that "Dysfunctioning Just Fine" is really cool! Blessings!

  • Reply LeeAnn K December 16, 2017 at 7:01 pm

    Hi! I'm currently searching for a diagnosis on whatever I have (?) but I'm also a dancer. Doctors have suspected POTS . I'm lucky and can still dance, but it's so inspiring to see you dance even in a wheel chair. Thank you

  • Reply chronically_ill_chronicle December 25, 2017 at 2:44 am

    I SOOO NEED ONE where’d you get it??

  • Reply Alyssa Vargas January 28, 2018 at 5:17 am

    please caption !

  • Reply Epic Dyslexic March 4, 2018 at 7:18 am

    Hey, hun! I was just diagnosed with POTS but have been living with these issues my whole life basically, just was always told it was IST and other things but never was put all together. In fact POTS was ruled out so many times it is quite infuriating. Anyway, I have quite severe full body tremors with it and most of the time cannot get a reading from a wrist, arm or finger cuff because of my tremors, even in the hospital they have trouble. EKG readings get such bad artifacts and interference that depending on how bad I am they won't bother. I try to count myself but I'm too shakey! ? and also, even hospitals can't keep up with my 200+ HR. I'm more worried about my blood pressure and how high it is and was wondering, anyone else know a way around the tremors to get a reading?

  • Reply Dysfunctioning Just Fine March 5, 2018 at 9:51 pm

    Hey Everyobody,
    If you like the shirt I'm wearing in this video you're in luck, I'm bringing them back and you can preorder them on my new website

  • Reply Ebony A. March 12, 2018 at 5:28 pm

    I know that I'm late to this but I just want to thank you. I've been living with dysautonomia for 5 years now and I haven't found much information that helped me at all and the doctors didn't have much to say about it. I'm going to try some of the tips you mentioned. Thank you so much.

  • Reply Alyssa Vargas March 13, 2018 at 11:39 pm

    at the moment im not quite sure ! ill be sure to let you know if i see one. thank you for listening <3

  • Reply Sidney Siren March 31, 2018 at 4:00 am

    The c bands make me sicker, glad they help you,

  • Reply Yvonne Kass May 17, 2018 at 6:34 pm

    Where did you get the medical card? I have my stuff on a flash drive in my purse.

  • Reply Dyna Mite May 25, 2018 at 4:17 pm

    i find mio works for me – gl ty for the video

  • Reply Cassie Lee June 18, 2018 at 3:39 pm

    I use nuun also, I like them bc they have a lot of sodium and not a lot of sugar

  • Reply Patricia N August 23, 2018 at 2:15 am

    I like Liquid IV as an electrolyte beverage. It has pretty limited ingredients—comes in packets and you add it to water. Tastes vastly better cold! Great video.

  • Reply Emily Anderson September 12, 2018 at 12:30 am

    Hi beautiful! Helpful video, I loved it! I have a severe case of POTS and just got my first wheelchair recently and it was a wonderful decision for me, since I just kept fainting everywhere <3

  • Reply Rustie Rothstein January 4, 2019 at 12:04 am

    Great info about dysautonomia. You might want to contact the MedicAlert Foundation. I really like having their ID bracelet. It will give you a member number, and has a toll-free phone number for emergency responders to contact. They can take all of your info, and is easy to update. Also on the tag, you can put your diagnosis, etc. There is an annual fee, but can save with a multi-year membership, or a life membership. They also provide members with wallet cards. They have lots of different styles.

  • Reply Jess Horse February 18, 2019 at 3:23 pm

    This is litraly the best life hack

    So y'all know that blood pooling is painful

    Put the blood pressure cuff around wherever the blood is pooling and turn the moniter on

    Best. Thing. Ever

  • Reply Whimsical Aubrey March 20, 2019 at 9:01 pm

    Can insurance pay for the Smart Drive Power Assist? It sounds life changing, but I looked it up and it’s over $6,000 on Amazon… Is it less expensive on the main website or something? Did your insurance pay for it?

  • Reply Stephanie Comalander May 3, 2019 at 5:22 pm

    Thank you so much for the tips. My oldest has dysautonomia, EDS, and other issues. I would have never thought about the wallet card.

  • Reply Sarah Malone May 4, 2019 at 9:28 pm

    So my mom and I decided that this specific medical bracelet is the one we want. What all need to go on the front and back

  • Reply Blue's Neighborhood June 6, 2019 at 11:34 pm

    Hello, I just came across your channel and this has been the most helpful chronic illness essentials video I've watched so far! Thank you for sharing this with us. I have connective tissue issues (we're thinking Ehlers Danlos, as well as dysautonomia but I don't have the official diagnosis yet), and am nauseous all the time. I have never considered getting seabands, but this is a great idea. Nuun sounds like it would be a great idea for me too ^_^

  • Reply Caro Rio August 8, 2019 at 2:11 am

    Where did this exact medical ID come from

  • Reply Sukhjeevan Mahil August 26, 2019 at 2:32 am

    The music at the end shit me up, was unexpectedly loud, had a nice adernaline surge

  • Reply Chris Hutchins September 15, 2019 at 11:13 am

    They were a couple of chips there that will really help me – things I already knew about like the heating pad which I was planning on buying but I’m having a funding meeting this week and you never know – you don’t get unless you ask! So you might of helped me in more ways than one by saving me a reasonable amount of cash. Great video you look gorgeous.. Well done. I know it might look easy to some people to make YouTube videos but equally no it’s not….

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