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Depression and Heart Disease

Chronic Illness Tag – EDS, POTS, MALS, May Thurner, and Celiac Disease Answers

Today I am doing the chronic illness tag stick around to hear more Hello, my name is Alyssa Layne and welcome to my channel where I share all about my chronic illness journey to help educate and Support others and like I said today I am doing the chronic illness tag And I’m doing the version of the tag that Mickey did on her channel Life With Stripes So I will link that video And her down in the description box below this video so you can check that out and you should because her content is really wonderful She also made that video almost two years ago now so I am super late to the party Which also means that nobody actually tagged me in this video, but I decided to do it anyway because I think the questions are really interesting and hopefully this will help us get to know each other better and Start some interesting conversations down in the comments section below this video. So let’s get started so the first question is what are you diagnosed with and There are five things. I currently have a diagnosis for slash one of them I’ve been treated for but it’s important to keep talking about so I’ve got POTS which is Postural Orthostatic Tachycardia Syndrome, EDS which is Ehlers Danlos
Syndrome. And as far as we know I have the hypermobile type Then there is the MALS, the Median Arcuate Ligament Syndrome Which I was treated for and then May Thurner Compression Syndrome and Celiac Disease. So I think that rounds out all of my diagnoses So what do I tend to do when I can’t sleep? usually I will either read a book, although that can sometimes take a lot of mental energy that I don’t always have or I Will YouTube spiral or binge something on Netflix or Disney Plus or something like that So those are the things I tend to do when I can’t get to sleep So this next one’s kind of interesting it is what is the worst side effect you’ve had from a medication now This is pretty easy. The worst one was from Zoloft, which I think I talked about in my POTS Diagnosis Story Which is up here and down in the description box below this video But I was prescribed that early on when I was diagnosed with POTS by my cardiologist and Zoloft It’s usually used to treat depression now I was not depressed at the time, but I was still put on the medication and it definitely messed with me. I started having these horrific nightmares Every time I would go to sleep for like 2 or 3 months straight until I was finally taken off the medication and honestly I still get those nightmares with like an increased frequency I think then from before I was on the medication so that was definitely the worst because of course when you’ve got a lot of these conditions that cause fatigue being able to sleep well is super duper important and it definitely messed up my relationship with sleep and Damaged it a lot more than it already was So that was the worst for sure Okay, so we’re getting into the deeper questions here. This one is how has your condition or conditions I guess in my case affected your mental health And I think on the most part if you take where I was before I got sick to where I am now They’re probably about the same I might even be happier now than I was back then but that’s hard to say because I was so young. But there was definitely times in the intermittent In-between space where I was unhappy for sure and maybe even like teetering on the edge of depression I’ve never been suicidal or I don’t know that I would have ever said that I was depressed but it certainly had an effect on my mental health and it definitely changed how I think about my relationship to my body Which I think is different than the average walking around healthy person I don’t think of them as one and the same just because my body can or can’t do something Like doesn’t, I don’t view that as being the same as I can or can’t do something So like that’s kind of a weird mental health thing that’s happened Which maybe I should make a video about that and explore that some more But on the whole I think chronic illness has also forced a lot of resilience into me It takes a lot to knock me out of my like baseline pretty happy content state Okay, so this one Shouldn’t be as hard as it is, but it’s describe your social life. My social life isn’t great Although it’s better than it’s been for quite a few years. The problem is that I am an introvert a hundred percent. I’m an introvert I know it’s kind of weird introvert on YouTube, but I definitely like recharge by being alone so it’s easy for me to just forego social interaction and Also, I got sick at like pretty important social times. So I got sick right at the start of high school And then I started college, but got sick like three months in and had to take a year off So I sort of missed out on a chance to build some of those Relationships but on the whole things have been getting better as of lately, especially this past semester I’ve been forcing myself to get out of my comfort zone to join clubs to talk to strangers to practice those skills, and I’ve also been Using gaming as you can see by my wonderful collection of games behind me and I’ve been having game nights to sort of help facilitate better a better social life and really building up some Relationships some friendships again, which has been so wonderful and I love it so much So the next one is what is the hardest thing to do when Flaring now for me. This is I guess an easy one because it’s casual communication I’m an introvert obviously so communication. I don’t know I’m a good communicator But the casual area of communication is where I really lack like Public speaking talking to you guys on the internet writing formal emails or formal letters. Like I can do those things Those are fine But it’s like let me send a text to someone who I know really well and like hang out with Somehow becomes really difficult for me what I’m flaring and I think I could be wrong here But I think it has to do with sort of the anxiety and guilt of talking about being sick with people With whom I don’t often bring that up It’s like I’m so I feel so guilty about having to cancel plans or have people wonder where I am That I have the hardest time actually telling them that It’s like in my head if I just don’t ever send the text, or if I don’t open the text Then I don’t have to deal with the anxiety of responding which of course is terrible and just puts it off and makes it worse But still somehow that that is something definitely struggle with obviously physically while I’m flaring if it’s an EDS flare like stairs are the worst or if it’s a POTS flare, literally just getting out of bed Is super duper hard, but for me I think that mental battle of just communicating with people when I’m flaring is the hardest so this number seven is super hardcore and deep and it’s do you have any worries about the future? Of course, I have worries about the future like I think every I don’t know maybe everyone has worries about the future. I Definitely do but I try to just sort of put them from my mind because none of these things are things that I can do Anything about right now, but like I worry if I’ll ever finish my undergraduate degree I worry if I’ll ever be in a relationship or get married I worry will I get into med school Will I be able to handle the rigors of med school and internship and residency with my chronic illness? Will I be able to have kids in the future? Would it be safe or smart idea to have kids in the future either for me or for them? Like all of these are concerns I have about the future But I really try to just sort of let go with them Not focus on them because there’s nothing I can do about it in the present. I just have to keep moving towards my goals and Coping and adapting with my life the best way I can So mostly I just try to ignore them and put them from my brain, which is maybe not, you know, the healthiest coping mechanism But it’s the one I’m going with apparently number eight favorite comfort food So this is hard because my diet has changed a lot recently So I was diagnosed with celiac disease not that long ago so pre Celiac diagnosis. I definitely would have talked about like bread and muffin Oh blueberry muffins I love you, and I miss you So much Also, you know carrot cake and just like the sweets, the really bready sweets were my favorite cause I’m not a huge Chocolate person I know crazy right so now I mean I can’t do the breads I also try to avoid carbs because they don’t sit super-great with me. If it’s really bad. I’ll go for ice cream I’m a vanilla ice cream girl all the way Give me the Bluebell vanilla ice cream and that will make me feel a lot happier temporarily but if I’m not gonna go that extreme and take in all that sugar, I also Really like just eating pepperoni slices and pepper jack cheese, which sounds a little weird But it’s my favorite just super easy snack it takes Zero preparation you just grab them out of the fridge and I keep them in the house pretty much at all times So those are my like go-to comfort snacks and if it’s really bad Then I will be eating a lot of vanilla ice cream so number nine is tell a valuable lesson you’ve learned from being ill and They’re there to lessons that jump immediately to my brain. The first is that You have got to be your own best advocate it is so unbelievably hard especially for me I hate conflict I’m not about it. But I mean, I’ve got my mom who will definitely advocate for me but as I get older that becomes less and less of an option and you really have Got to learn to stand up for yourself and being ill has made me do that has made me be like look Physician, person in a somewhat role of power like here’s the deal. I need you to take care of this I know you might not think it’s a big deal but I need you to hit the books do the research and help me and Not let myself be dismissed which has been super hard and definitely something I’m still working on Another thing is something I mentioned earlier is just resilience like you just got to keep moving forward which is one of my favorite quotes from Walt Disney, but we do we just have to keep moving forward and it’s so important to just Have that that vision on what you want and keep making steps towards it Even if they’re itty bitty baby steps with chronic illness and you have to take ten steps back But you you need to take that next step forward at the next chance you get So those are I guess two of the biggest lessons I’ve learned from being ill so this was a little bit harder It’s name three things that have been taken from you that you miss since becoming sick Obviously I miss bread like that’s an easy one, it’s a cop-out but I do and not even just like I miss bread But I miss the ability to fully partake in Social activities revolving around food. So you go to a birthday party to Thanksgiving to Christmas to wherever and there’s always school events all the time free pizza Everywhere and I can’t have any of it and everybody else is enjoying their amazing food and I almost feel bad about not partaking it’s not because I don’t appreciate the efforts others have taken to provide food, but just I Can’t partake. Anyway, I def- I miss the social interaction more than the actual food the bread But they go sort of hand in hand. Two other things I miss that were taken away from me. I guess Like the number of hours in the day that I have like I don’t have as many hours in the day as I did Or that I would have if I wasn’t sick so like a lot of college students You know will talk about they were up until 3:00 or 4:00 a.m Getting stuff done or they were at the library or they pulled it all nighter and I can’t do that I can’t my body will not allow me to do that, which is maybe a good thing I mean, I work really hard to be organized and on top of deadlines But if we got to that point where like I had a paper due I would just have to get it done Quickly and maybe not as well. So I definitely missed that and a third thing that was taken away from me I don’t- I don’t know I guess my Ability to just be super spontaneous Because I’m not that I tend toward spontaneity because I’m very much a planner but just the option is not there as much anymore, you know somebody texts on a Thursday night and says, hey you want to go to the movies? I’m like, no I can’t because I can’t put off my homework because I can’t stay up late and I’ve got obligations the next day Or I really have to weigh, well How much energy is that going to take me versus how much energy do I need to get through the next few days? so I guess those would be the three things the Ability to fully be present in social interactions revolving around food, which I usually can’t eat My spontaneity and then whatever the second one I said was oh the number of hours in the day So yeah, so those three thing. And the last one which is interesting so number eleven So how old were you when you first started? Experiencing symptoms and this is super interesting. I probably started Experiencing a lot of the symptoms of a lot of different things that are around the same at the same time. So early early adolescence so maybe Fifth or sixth grade. I know I started rolling my ankles a lot in basketball in the sixth grade I had one really bad sprain which was in all reality, probably a subluxation, but I didn’t know that at the time because I wouldn’t be diagnosed with EDS for a Really long time after that. So that’s probably the earliest and of course also my lack of Running endurance, which is probably in early POTS symptom. I Had I think symptoms of MALS as early as the 8th grade so gosh, so probably the earliest would be I guess sixth grade-ish how old are people in the sixth grade? 12, 11? Somewhere in there when I first started experiencing symptoms although I was 14 when the symptoms got so bad that we finally went to the doctor and were like something is Obviously wrong, this is abnormal Can we please figure out what it is? So that’s probably how old I was when I first started experiencing symptoms so 11 ish? And that is the entire tag, so I don’t really have a ton of chronic illness friends on YouTube yet Plus this tag is super duper old so I’m not going to tag anyone specifically However, I would love to hear your responses to any or all of the questions in this tag so leave them for me down in the comments section below this video and I will be sure to check them out and I would Love to talk to you about them. So please do that Also if you want to see more from me Be sure to click on the subscribe button to let YouTube know that and I will see you all very soon with another video. Bye!

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