harmoniousworld

[harmoniousworld]

I'm not a person anymore; I'm an illness.

I come alive maybe 2 times a month. My existence is illness.

[harmoniousworld]

I'm not a spoonie or a zebra or a warrior.

I'm sick. I don't need cute labels to belong.

[harmoniousworld]

Even though I say I’m having “difficulty breathing”, it doesn’t mean that I’m going to appear the same way as if someone were having a heart attack.

I wanted to make this blog post because there seems to be a lack of awareness on this topic.  The other day, I saw a new doctor on Telehealth. I told her I was having issues breathing and that I preferred to write in the chat log (if there was one).  She said there was no chat log, and I said that I will hang on as long as I can speak.  She did urge me to call 911 if I needed to, but she was pretty hasty, rolling her eyes pretty much the entire time, with an attitude (before I even told her I was having difficulty breathing).   I won’t be seeing her again.  In her notes, she didn’t dismiss that I was ill, but she did write down that I claimed to be having some breathing distress but that I was “talking fine, talking in full sentences / paragraphs, and not in any breathing distress”.  She put something like, “patient claims she’s breathless and can’t talk, yet she continues to talk very fast and is not actually having any issues breathing.” I wanted to put this out here, loud and clear!!  Just because someone is feeling distress upon breathing and while verbally speaking does NOT necessarily mean this person can’t talk “at all”, and it doesn’t mean that this person isn’t suffering to the max when he/she speaks.  There are MULTIPLE manifestations / types of “breathlessness”.  That is an ambiguous word.  That is why I used the phrase “difficulty breathing” earlier on. No matter the semantics you choose to use, the universal message should be clear: that if we tell you we are in distress verbally speaking, WE ARE.   NOT all shortness of breath presents the same.  Of course I was not having a heart attack.  I know what THAT type of “short of breath” is like.  That is a breathing for me that was very fast, with frequent deep gasps, with the worst distress and inability to catch my breath whatsoever.   For my usual daily symptoms, though, my “difficulty breathing” is much different than that!!  I guess even doctors aren’t familiar with “this type” of “difficulty breathing”.  Again, having “difficulty breathing” could mean a variety of things!!   Well, she did technically tell me she was not a doctor but rather a nurse practitioner.  (I even had a NP who didn’t know what dysautonomia was recently, so I can’t hold them too accountable here. But, they should open their minds a little.) Even when I’m not speaking, I have labored breathing.  It’s not the same type as when you have to labor your breathing when you’re in an SVT attack; I get that way too.  That’s much different. When I have labored breathing, I have to manually focus on each breath.  My chest is also VERY tight, and my airways are not that elastic to begin with.  My lungs are always tight and compressed.  I also have apnea both while awake and asleep... and not the obstructive type but the central type where the brain doesn’t even send the message to breathe.  I don’t have apnea all day long.  That part does come in waves.  Some days it’s very severe and breathing isn’t automatic.  At that point I have to focus very hard, and when I speak and my brain is going fast, it becomes almost impossible for me to breathe enough.  I will talk until I get faint and then it jolts me to breath.  But on the moments/days that the apnea is not severe, I still have many other respiratory issues that are exacerbated while speaking verbally. There are moments I can’t speak at all, and there are moments I can speak with just a little distress (which always worsens as I go).  My FEV1 is EXTREMELY low, which is the forced air output. My lungs are also hyperinflated, as seen on chest x-rays. I was also diagnosed with COPD on top of astham and the low FEV1.   When I speak, I am VERY lightheaded / faint.  I get more and more near-syncope as I speak.  My airways get tighter because of their lack of elasticity. I did have nodules on my vocal cords years ago.  I also felt a pop in my airway back in 2010 when this all started with my airways. I did have breathing difficulty since I was a child with exertion.  I see phosphenes (stars) when I speak.  I start to gasp for air.  I take breaks at certain times. I may talk for 4 minutes straight and then suddenly stop talking fully. I may start doing very deep breathing which can sound like I’m sighing... I assure you I never sigh.  It is me deep breathing.  And people don’t even notice the deep breathing.  If you see me in a video, though, you’d see how much distress I’m actually in if I were to highlight the exact moments that I’m holding my chest, breathing oddly, etc.  I start to sum up my answers, EVEN IF I am still talking “a lot”!  This is because I know the convo could go on for a while and I want to answer as much as possible even if I have to sum things up here and there.  For anyone who knows me, they will know I’m an EXTREMELY DESCRIPTIVE person.  That’s just the way I am.  I’m not a person of a few words; I’m a person of many words.  I love to talk.  I was always extremely talkative.   Talking on the phone / video urges me to speak louder, and any time I speak loud, it makes me more breathless.  I also used to be a singer and now I cannot sing much.  That should be full proof right there.  I went from being able to belt out a tune, even though I was always lightheaded to some degree doing so, to being able to hardly finish one stanza while only sitting down.  Now my FEV1 is so low that I can hardly get a few lines of singing out at one time... and I can’t sign with much force for long.  I can maybe sing with significant force for ~2 seconds max. I also can still scream / yell, but only for 2 seconds, and then i’m left suffering greatly afterwards.  After every vocal interaction, I’m suffering SO much.  It actually makes me worse because then I can’t go and exert after speaking.  After talking to someone, it usually takes about 45 min for me to reset and then I can go into a wheelchair or use the bathroom, etc.  People have NO idea how distressing this is.  I would love nothing more than to use sign language or another method, but people do NOT see this as a “real problem” because it’s so rare.  If I were deaf, yeah, sure people will use sign language.  Funny thing is I can hardly hear... I lip read mostly now... and when people turn their backs and I can’t hear them, I have to ask “what” repeatedly.  And it’s not even an issue with volume... I can hear volume fine, so hearing aides won’t help.  It’s a problem hearing clarity, as I have extremely loud tinnitus going on at all times, involving knocking sounds, rumbling, and 8+ pitches of tones, some pulsing.  I also have tensor tempani and tons of ear pressure.  So believe me, I would love to use sign language, but because I’m not “deaf” no one would accommodate that.  And here I will sit, suffering, for the rest of my life!!!!  I also would like to write things down.  Sometimes I do. Some people will not entertain that, because they can see I can still speak. But what they don’t see is how much worse it makes me, how bad I feel during it and after it, and how I can’t do anything for so long after speaking.  It would give me so much freedom to be able to use sign language or write things down.   Just because I can verbally speak does not mean it’s not torturing me.  MY LUNGS FEEL LIKE BRICKS to lift with each breath, and when I speak, I have to lift so much more.  It feels like 100 pounds.  And it exhausts me.  My heart rate goes up.  My heart also becomes inadequate and doesn’t beat right after talking for several minutes or even after exerting at all.  I burn so many calories from just TRYING to speak, due to my heart rate going up.  I get so exhausted just talking a little bit.  I can’t afford to speak but I do it anyway because I’m stuck in a world that only caters to visible disabilities.  If you have an invisible disability, forget it.  You’ll always be seen as meek, weak, and a wuss to outsiders.  I’m so spent and wrung out from all this explaining.  I don’t owe anyone an explanation, but here I am making myself all stressed out because an uninformed, narrow-minded nurse would rather assume than look at my past history or ask me in writing on a message. 

[harmoniousworld]

Introduction of myself!

Hi, all!  I just wanted to introduce myself, as I have a lot of new followers and people I’m newly following on here.  I also am not very familiar with this platform yet, so excuse me as I am still learning the ropes! I’m 40 and from the USA, in the state of New Jersey.  The theme of my blog is chronic illness, in which I discuss my life with the trials and tribulations that come along with this and chronic disability.  My blog isn’t just about the suffering, but rather the day-to-day minutiaes of life and my innermost thoughts!  Everything I do is affected by my conditions, whether I like it or not.  I do not want to ‘become’ my illness or be identified as such.  I just want to discuss my daily life, my thoughts, struggles, achievements, and more.  For more background, I use a wheelchair, and I struggle even doing simple things, like caring for myself.  I have several conditions, such as Ehlers Danlos Syndrome, which causes me to have dysautonomia, exertion intolerance of the cardiovascular/pulmonary systems, heart/lung issues, neurological issues, gastro issues, spinal/neck issues, vestibular issues, vertigo, seizures, chronic pain, many sleep disturbances, and much more.  This may sound like a lot, but EDS is a systemic condition, which means it affects the *entire body*.  Thus, there are many complications and limitations that come as a result of this condition.   I hope to get to know you all, too!  So, please leave me a comment introduction below if you feel inclined to do so!  Hope to meet you all! 

[harmoniousworld]

The ER nurse said it didn't make any sense that I can't walk, stating, "But your legs are fine." I explained I have a heart and lung condition, and I wanted to get into my dysautonomia, but he stopped me and said, "But that wouldn't affect your legs or your ability to walk."

Okay, so I need to point out that this goes beyond me being offended. This is a deeper problem. How does a nurse—especially one who has been working at this very busy ER for over 5 years—not know about people in wheelchairs?? This is kind of scary that these are the people we entrust to care for us. Nevermind the fact he said something hurtful while trying to paint me as a liar or hypochondriac; the lack of awareness is more alarming!

[harmoniousworld]

Contrary to popular belief, I personally believe that the newer generations are getting smarter with their emotional IQ and more in tune with their psyche.

I’m 40, middle-aged.  I look back to when I was about 18 years old, and I know that I was mature in “some” ways, but immature in other ways.  I think everyone is this way to some degree.  We have our strengths and weaknesses across the board.  Maturity is no different.  It’s not a black and white scale either.  It’s a spectrum.  We are not just “mature” or “immature” as a whole.  We are mature at certain things and immature at other things.  Of course, some people can be overall more mature or more immature than most people.   I read a lot. I don’t read a lot of fiction.  I read a lot of blogs and life stories.  What I notice from my own subjective point of view is that the younger generation is far more in tune with certain psyche aspects than my generation was at their age.  I do believe this is attributed to the fact that we have had an internet expansion and social media is the norm. When I was 18, Google was just starting to become popular, and we only had AIM and Yahoo chat rooms and messaging apps.   Then came MySpace and several other social media sites.  People talked and shared stories. Viewpoints started to TREND.  And through these trending / viral media sources, ideas spread.  The spread of ideas is not a new concept; ideas have been spread since the beginning of time.  Now, however, they are spread more rapidly to a larger amount of people.  So, I can get the news across the world much faster.  Pieces of other cultures can be adopted through even sharing digital blogs / stories / photos / etc.   One of the large “trends” I’ve seen in the younger generation—and in general—is being more in tune to the following topics: self-love, self-care, self-respect, detecting red flags of sociopathy and narcissism, accountability, and boundaries.   Sure, these things were talked about when I was a teen, but not to the extent they are talked about now.  It took me several failed relationships to actually get the wisdom I needed to understand self-love and self-care.  I joined a support group for relationships where I had learned so much over the last 8 years.  Teenagers are exposed to these groups at a young age now.  Had I had this much support (there are tons of people anyone can meet on the web) as a teen, and had I had this much insight, I would have learned these things sooner.   The talk about “boundaries” was rarely a thing back when I was 18.  It became a trending topic about 10 to 15 years ago, but it peaked around 4 years ago.  I have learned so much about boundaries, not just from my own experiences but from being able to learn of others’ experiences (thanks to blogs, social media, awareness videos, etc.).   I hear a lot of older people say that the younger generations are generally less intelligent.  I do not think this is true at all.  The younger people are putting their feet down earlier now.  They are learning to love themselves much earlier than the middle-agers did (generally).  They are forming boundaries—and learning that it’s okay to even have boundaries—at a younger age.  They are learning they are allowed to say “no” at a younger age. I was so brainwashed to think I was not allowed to speak up or to say “no” at one point.  Every generation has its differences.  And these are just generalizations anyway.  Wisdom comes at all ages.  Certain wisdom is being attained earlier now.   I have also noticed that almost all generations—both young and old—are getting more creative with writing (in general), writing more articulately (this comes with practice, and most people get this “practice”, thanks to social media). Social media has helped us in so many ways.  But social media has also hurt us.   There’s no doubt in my mind that social media is used as an outlet that has destroyed people, even leading to many suicides.   We just all need to do better.   This post was not to sway anyone to social media or against it; my main point here was regarding how the younger generation seems to be on a good path, intellectually.

[harmoniousworld]

I'm frustrated, angry, upset, sad, wrung out, bent in every direction, tortured, ambushed, suffering, and in the depths of the abyss.

The physical torment is too much.

[harmoniousworld]

I wanted to document this here if that's allowed. I have a comorbid situation along with EDS. I went to the ER today. Idk if I'm having a side effect from a new medicine or not. While at the ER, at about 4:00 a.m., I took "magic mouthwash" along with Amoxicillin, given by the ER doctor. I have taken the Amox. in the past and tolerated it rather well.

The side effects I felt of the mouthwash only lasted for 30 minutes. My throat got tight, but it was nothing major... nothing overly alarming.

Then I got home at about 5 or 6 a.m. and fell asleep by about 7:10 a.m. I slept for only 45 minutes before a new, unusual, alarming "ailment" woke me up. **Note: I may have had a similar event during 20 min of sleep before even heading to the ER, but I was not fully aware of what happened during my sleep that triggered the medical attack.

So, as for the medical event at 7:10 a.m., I really don't know if this was the same event as which I experienced before or if it was new and possibly from the medicine. Maybe the Amoxicillin was too strong of a dose for my body size.

This new symptom is extremely scary, and I'm not sure how to describe it fully, but I'll do my best:

I woke up with intense head pressure, but not my usual migraine or pressure that I have everyday. This was on top of it. And during this episode, I felt intense seizurish activity, but no seizure that was visible or even felt. No shaking. No staring type of seizure either. Electrical feeling. During this episode, I felt like my brain was very confused and disoriented (way worse than when you typically awaken). I felt like I was about to have a seizure, but I didn't. (I do get seizures regularly and oftentimes will get the warning.) But this was so different. It really didn't feel like a type of seizure. Anyway, it also felt like I was actively dying.... not to be confused with being afraid of dying. I was not panicked or afraid. It happened out of nowhere. I felt my brain like scrambling the electrical wires and trying to connect while the intense head pressure let up. The episode mostly resolved, until I went back to sleep for 1 second and it happened again. I woke up, took 20 seconds to recover, and went back to asleep... only to repeat again. I do have central sleep apnea, by the way. I feel like this is a mixture of some existing ailments, combined with a bad reaction to one of the medicines. I am now avoiding sleep because when I fall asleep I literally feel myself start to enter this most horrifying (for me) symptom.

I also need to mention I have an infection in a gland with tons of swelling (when I eat) that has spread to my head, ears, & neck.

Despite the infection, I don't currently feel feverish, weak, or the way one usually feels with an infection. (I did feel weak and feverish yesterday, though.) I only feel intense pain near the areas of the infection. I also do have a migraine with ear and eye pressure and hundreds of other symptoms that aren't new for me.

I feel the doctor was very negligent because he addressed no side effects of the medication, and he told me there were no further tests for my gland, which was a lie. He was confident that I had a tumor or stone— something blocking my salivary gland. He also kept walking away every time I tried to ask a question. I think he probably just had a lot of patients to tend to and maybe they were understaffed. I just felt like I was kind of left in the dark with all of these questions, and he felt really annoyed with me having to answer any of them let alone the 20 questions I had. They were actually relatively short questions. He cut me off when I 1st arrived as well and I never got to give him the full story. I spoke for 3 minutes straight and I was not allowed to really give the story.

[harmoniousworld]

At the ER...

I'm at the ER and feeling deathly. I know, I know, you can spare the, "Then how are you typing" comments. Lol. I should make an entire blog post on how I'm still able to talk, even when it feels like I'm on my deathbed. I'm not dead yet. :)

I have so many symptoms going on right now and feel like my body is shutting down. I need food and rest. Hope you all are having a better day. Hopefully I'll be able to add to this post later. It's still hard to type but I feel alone.

[harmoniousworld]

I'm just gonna let it all out on here, because I don't have anyone I can talk to about this.

I feel like I'm about to die, to put it bluntly. My illness has hit such a high peak, and I'm on the summit but can't find a way down. I feel trapped at the peak... I'm at the point of no return. The final chapter. The epilogue of my life.

My heart, lungs, and vascular system are all failing. My body is failing me. I think I have a blood clot in my right leg. I've been in bed for about 15 days now. My heart is so weak. I can't breathe properly. I am near-syncope at all times, and it's made worse by minimal movement. I can hardly keep my eyes open because they hurt so bad. I'm fighting just to type this on my phone. My head is killing me 24/7. I'm plagued with many other ailments, like hyperacusis (noise intolerance), photophobia (light intolerance), vertigo, nausea, brain zaps, chest pressure/pain, ear pain, migraine 24/7, restlessness, and so much more. The head pain and head pressure is relentless and debilitating. My neck and spine are causing me major issues. I can't sleep. I feel like I'm breathing through a straw.

Is this the end for me? I need to pick myself up out of this flare. Or is it even a flare... what if this is my new normal? I can't accept the latter, because I'm truly in a metaphoric torture chamber. 😫

[harmoniousworld]

I really don't post here much because I really don't know what to write. I know that sounds really cliche and boring. Like many bloggers, I probably wonder if anyone would even read any of this or if it is all in vain. Perhaps you stumbled across my blog because of a keyword search online or you are trying to connect with me somehow regarding something I posted. Either way, sometimes I'm just reluctant to post here because I don't know if anyone will read this.

I'll do it anyway. So, today has been uneventful. I've been feeling wrung out like a rag for the past month or two. Actually I probably felt this way for years but I just didn't know how to verbalize it in such a metaphoric way. I realized that this is the pure quintessential way to describe how I'm feeling about a month ago, though. I feel like there are so many twists and turns just like you would twist the rag to get the water out. And I don't mean twists and turns in my life. I mean twists in the way people want me to morph. They want me to do this but then they want me to do the opposite. I'm always told clashing advice and everyone wants me to take their advice. Everyone wants me to do the opposite of what they've already told me they want me to do. And I feel like I'm being tortured by it. Mentally tortured. I can't get away from this feeling. I'm wrung out in so many different directions, just like you would wring out a rag.

I don't necessarily think people are *trying* to torture me, but the end result is such.

This all stems down to one thing: illness. Why does it come down to illness? Well, being debilitated and sick is the culprit. People always have advice for me. People always have the perfect solution for my healing. Sometimes their advice contradicts what they've already told me. I feel pressured to take their advice even if I've already done it a 100 times. And then when I do take the advice, I'm given conflicting information from the next piece of advice from that same person, and it's very tiresome and confusing. I feel mentally drained to the point where I feel like sometimes I can't even go on like this. The physical pain is one thing and the mental anguish is another.

I'm not just criticized; I'm oftentimes shamed or degraded. I'm told I repeat myself. I'M AWARE THAT I REPEAT MYSELF. I am not just criticized that I repeat myself; I'm never asked why I do it. Sometimes I'm just stark made fun of for it. I'm happy to announce that I have a zillion reasons written down as to why I repeat myself sometimes. Wrung out. Can people just give me a break?? Throw me a bone, please! I don't harp on the way you communicate—like the constant interruptions, lack of listening, minimizing everything I say. I'm metaphorically squeezed and forced to stay awake until I cry tears when I'm tired. "Oh, but just take a sleeping pill," they say— instead of just asking me why I can't sleep and actually listening the whole way through and not just the first sentence!!

People ask me things and don't even bother to listen to the response. Not answering any questions from those people anymore. You clearly have your mind made up before you listen to my reasons.

[harmoniousworld]

Hello, all! This is my very first blog post to Tumblr, after being a long-time WordPress user! I have yet to pick a theme for my blog, but I’m going to start with health/illness/disability. I don’t want those topics to “define” me, but I want to share the struggles. I may eventually shift the theme of my blog, or maybe take on a few themes in this blog. I just wanted to share my story... my journey through life in general. I don’t like platitudes or false inspiration, so you won’t be receiving many inspirational sayings from me. I’m optimistic, for sure, but when it comes to this illness and disability, I’ve learned to be more realistic.

I have a blog dedicated to my illness on WordPress, but I want to start fresh with a new perspective. What’s weird is that writing about my illness actually makes me frustrated. That’s why I mentioned that I may end up shifting focus on this blog. :)

I am actually typing from a wireless keyboard without actually looking at the screen. In fact, my screen is turned fully off. I will have to have my husband edit this for me when I’m done. He’s already busy enough, but if it edit this myself, it’ll defeat the purpose of me using the wireless keyboard: to avoid having to look at screens. I’ll be getting into WHY I can’t / mustn’t look at screens in my future posts!

For now, I just wanted to give more of an introduction.

I’m almost 40. I am suffering. I don’t have much in life. This blog may be the only thing that’ll keep me afloat.