Chronic Illness Tag | Part I
Hi guys I have been watching nothing but SpoonieTube videos for the last couple weeks now And I just really want to join in on the conversation, and I thought that this would be a good way to just kind of [say] Like, "Hi! This is me!" for my channel. So, this is part one because I do not have the ability to sit still and Edit, mostly edit, yeah, this whole video for all 30 questions, so we're gonna do it in two or three parts, but yeah so, Hi! Welcome to A Warde with Words, and let's get going Okay question 1: The illness I live with is... Well the most Intrusive, I guess illness that I live with is dysautonomia, basically I have neurocardiogenic syncope aka neurally mediated syncope, aka vassodepressor syncope Etc etc, and that is under the dysautonomia umbrella of a dysfunctional autonomic nervous system, which of course Controls most of the stuff in your body-- all of the things that are automatic that you don't have to think about [like] breathing, digestion digestion, blood pressure, temperature regulation, etc etc. Lucky me and us, we suck at all that stuff. I also have vocal cord dysfunction which until I was 23 or 24 I had been told that I had exercise induced asthma Which is really common for vocal cord dysfunction the symptoms are pretty much the same except in vocal cord dysfunction You don't respond to inhalers because it has nothing to do with our lungs.
It has to do with our Actual vocal cords closing, and they are supposed to open like when we are trying to get air into our lungs It's like now. I also have, um, interstitial cystitis-- my bladder doesn't have all the lining it should. I have Restless leg syndrome which is Really, really, annoying. I have Anemia, I have really bad TMJ. It's just a constant source of pain and soreness --Oh, look have I been talking like that? Yeah. Yeah, so there's a lot of pain here all the time.
I also have ADHD pretty severe severely anxiety, depression, and PTSD and I am Hoping in the upcoming year to be evaluated for Ehlers-danlos syndrome. I finally just recently Really looked at all the criteria again, and I was like "Yeah, yeah this this sounds like me pretty sure this is me." and who knows down the line what else will be diagnosed or whatever, but that That's what I am diagnosed with at the moment 2: I was diagnosed with it in the year... Around 2012 I would say. I was around 24 and living on my own for the first time I was Thankfully on Medicaid and so I finally had the means to go to the doctor for things and I wasn't living with any Partners or family members for the first time in my life who was just telling me that I'm a hypochondriac and I'm overreacting And all of that fun stuff, so I finally started going to the doctors, and that's when I finally started getting diagnoses 3. But I had symptoms since... Childhood I remember being an elementary School-aged kid and I lived with my grandparents most of the time, and I remember walking around with my grandpa's carpal tunnel brace, wrist braces- Heh- wrist braces that like kept it still and I because I was complaining about my Wrists hurting and so he got me those and my mom would complained that I was just being a hypochondriac My grandpa would be like "Why don't you get her checked out for arthritis or something? She shouldn't be complaining about these pains!" But, that never happened. I also remember in high school.
I had a heart monitor Like, one that stuck to me and then I walked around for a week, or it must have been a few weeks But nothing ever came of that the doctors were just like "Yeah. It's a little weird, but... [Clueless sound]." So I don't know if that was like the dysautonomia or the anxiety or whatever But I was obviously having problems With a whole lot of things when I was young.
4: The biggest adjustment I've had to make... Like I said I have had Everything that I have as long as I can remember. I mean for one my memory does suck but to like I don't think there's there's anything that I deal with that was sudden onset I know a lot of people get a lot of these kind of conditions from a Medication or an illness or something that has happened where there's like a before and after, but for me There's only before and after diagnosis, which is a big deal, But not a before I was dealing with those symptoms Number 5: Most people assume... I don't know, the first thing that comes to mind is that When someone asks what dysautonomia or NCS is and I explain..
I think when people hear that they just think of oh yeah There's been times in my life where it just stood up too fast, and I felt like whoa Okay, I'm fine and and so Maybe they just think that that happens to me more frequently a few more times a day or something. Really, it's much more than that. Like I said the autonomic nervous system Controls all of the parts of your body that are automatic, so it's, you know, digestion It's also blood pressure.
It's a lot of other things, which I've just forgot.... Um because brains are troublesome... Also, I think something People make assumptions about is vocal cord dysfunction because it does it sounds really benign. It's like "oh There's something weird about the way they talk" or something, but it has very little to do with voice It's being able to breathe because your vocal cords are Dysfunctional and keep closing off your airways. Oh, and don't get me started on ADHD I'm sure most people watching this can Imagine, or [already] know all too well what people make assumptions about For us. Yeah, we're not all hyper five-year-old boys. [Hrruumph!] Okay, and 6: The hardest part about mornings is..
Oh not much in the winter time um It gets really cold, obviously, in the house and so getting out of the blankets is really hard because It's just really cold, and [I have] temperature regulation problems, but other than that The mornings are pretty easy for me that that is my peak time of day, so I am pretty functional as soon as I wake up and Then it's pretty much downhill from there 7: My favorite medical TV show is... House It's also the only one I ever watched other than reruns of Scrubs every so often when I was a teenager But I loved it because it is a medical take on Sherlock who I love. Holmes... House Wilson... Watson they did that on purpose! Yeah, so that's really the only one I ever watched, but I do love it and I really wish that House would come and diagnose me.
Please I need you Dr. House! 8: A gadget I couldn't live without... It'd have to be, like, my computer. That's where I find out information. That's how I work 'cuz thank goodness, I work from home.
That's where I find community and YouTube and tumblr and all of the spaces where other people with chronic illnesses Can come together and not feel quite so alone 9: The hardest things about nights are... Just getting comfortable-- my hips are always like, achey So I usually end up sleeping with basically my knee at my chest and like mostly on my stomach, which isn't how I used to sleep, but now it's kind of how I have to to get my hips comfortable, but if even that's not terrible. I have, you know, learned how to do some things. I have a memory foam, like cervical support or whatever just one of those normal like It's like little bump, big bump! pillows I had a rain sounds app on my phone, which I go to sleep with so it's just like nice rain, white noise I've learned how to sleep with just like one comforter only because if I sleep with any more even when it's freezing out, I will wake up just Really drenched in sweat and like, a really weird, Specifically extra stinky gross sweat. I don't know, so I have to just sleep with that one comforter with that pillow with the Um... Mmm... Oh no, with the... Uh.
Rain sounds app. And I also have a really great alarm clock, which does also help me in the mornings. It's like, one of those sunrise Alarm clocks so 20 minutes before my alarm is set to go off it slowly starts brightening and so then by the time The alarm goes off, which is pretty little birdies chirping, It's as bright as daytime in my room Which really helps me hop out of bed, otherwise I will just stay in my warm comforters for way too long. 10: I take blank pills and vitamins..
I take six pills, but only two medications at the moment and no vitamins at the moment because a lot of them are not actually able to be processed by the body and So they're basically Really scammy and there are some out there. Which are legit, but um I'm not taking any of them at the moment Though I should be 11: Regarding alternative treatments... I am a recovered new-agey person And I'm just really pro-science [now] but at the same time, I do think that a lot of alternative medicine things have plenty of value as long as you are using them as Supplements, and you are not breaking the bank to do so. Because there are also Issues I have with the alternative medicine industry, which are just like horrifically overcharging really, like, desperate people who just want to feel better and Really taking advantage of them-- some not even on purpose, they really believe in these things... That are proven not to work But I think if you keep those things in mind, and you just do a thing [and say] Okay, I just like this, I accept what the science is, you know, it's not breaking the bank-- then you do you! like, Do what makes you happy, just don't put yourself in danger To try to get better. 12: If I had to choose between an invisible illness and a visible illness Which would I choose... I don't think that I would switch to a visible illness I mean it does really suck for people not to take you seriously but just thinking of how much crap we have to put up with people with until invisible illnesses and then like add on top of that like More like discrimination and all kinds of other stuff that people who are very visibly Disabled have to deal with.
Like, No. Thank you... Well one advantage of having Invisible disabilities is that The people don't know that you're disabled unless you tell them so 1: you have some control over "do I trust this person or not?" and People with more visible disabilities do not have that 13 Regarding work and career..
This one. I could go on about for a while. This is really where I struggle um Because I have not only the Physical problems of, especially dysautonomia, where I cannot stand up I can't take any job that requires me to stand up for any amount of time Really, or be in the heat or being too cold and bla bla bla bla But on top of that. I have really severe A.D.D. And that really limits what I can do also I'm also really awesome at certain things! but, also just really bad at the things that most people can do just fine and so that really has caused a problem for me in having a job and career and right now I teach ESL to kids online and This job is so great for me because I am great with kids I love kids I can do it early in the morning when my brain still works. I don't have to leave the house I don't have to deal with very much like Administrative stuff at all and I'm just really really grateful for this.
But it is part time, and in the upcoming year I am going to have to look for either another part-time job, or a full-time job again so, [frightful and exhausted] that's gonna be fun... 14: People would be surprised to know... I don't know... Which people? Fellow spoonies or Normies? Maybe something that's surprising is that I have had Probably all of my conditions from A.D.D. And Depression which was really serious when I was a kid actually, To dysautonomia and vocal cord dysfunction and all of these other things. I have had the symptoms since I was a kid but no one ever Like, I never got a diagnosis.
I was always treated as a hypochondriac and Wanting attention and all of that so that might surprise some people? That You can have so many health symptoms and still just have Parents and family members and teachers just be like [disinterested] "meh." Other things I I think really what would surprise people is if they've fully comprehended like all of the things that Dysautonomia effects even A.D.D. Has that problem too, is like it Sounds like it affects this one thing But no, it actually just affects like every part of your life, every part of your body, in all of these ways that you wouldn't really know unless you've Experienced it, or done a lot of research, or lived with someone with these conditions. And I think a lot of people would just be like "Whoa dang" if they really got the scope of it.
Hi guys I have been watching nothing but SpoonieTube videos for the last couple weeks now And I just really want to join in on the conversation, and I thought that this would be a good…By: A Warde