Mermaiding with Chronic Illness

[AniaR]

I have been asked a lot to talk about this topic, so I made a video!


https://www.youtube.com/watch?v=3MEu3FaTiuE&t=25s

[Mermaid Danielle]

Thank you for sharing, you are a huge inspiration!

[DancingJohari]

That was beautiful! I have a condition called sinus arythmia, which is dr talk for "irregular heartbeat"

I also have asthma. It used to be really mild, but lately, It's gotten alot worse. If my heart rate goes too high, I run the risk of passing out. This means that exercise is hard for me. I have figured out over the years where my danger zone is. My asthma is currently being treated with an emergency inhaler, nebulizer treatment and a steroid called Prednisone. In a week, I'll be switched over from prednisone to symbicort.

Bcc ecause of all this, I am very prone to head colds, respuratory infe tions, bronchitis, pneumonia, sinus infections and anything else that decides to attack my respiratory system, including flu and flu like viruses.

Right now, I am javing round 3 of respiratory illnes which started around thanksgiving. Because I am alkergic to certain antibiotics, and because weaker ones no longer work for me, I'm very limited on what I can take for an infection. I'm 41 years okd, married with 3 kids who are special needs. What's a day off? lol.

Thank you, Raina, for sharing your story. It helped me to realize that I am not alone.

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[AniaR]

I have an irregular heartbeat too! It doesn't affect me much so I didn't think to say it actually, but caused issues when I was a kid.

[DancingJohari]

I believe it! It makes exercising hard, and makes it so that cardio can only go to a certain level for me. I'm not able to lose weigjt eadily either between that and an underactive thyroid.

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[AniaR]

yeah I struggle with cardio too, hurts my neck where I have my pulse which I know is weird haha! I do weight lifting!

[Mermaid Kane]

I believe it! It makes exercising hard, and makes it so that cardio can only go to a certain level for me. I'm not able to lose weigjt eadily either between that and an underactive thyroid.

I have heart issues too! We've done extensive tests on it, but the doctors are puzzled. They are aware it is easily aggravated thanks to a 30 day monitor, and tell me to stop if it starts hurting badly. I generally didn't listen until I pushed myself too hard and blacked out.

[AniaR]

I believe something like 50% of the population has a rythym issue with their heart. Makes you wonder if "normal" is wrong, lol

[Saelyyia]

Thank you for making this video. I also live with chronic illness' and it can be difficult and I feel it is something the majority of the world has a hard time grasping when all they see are the pretty pictures/sparkles we choose to show them. I used to be a classical ballet dancer until we found out I had a genetic fluke that ended up damaging my IT bands and glute-med permanently, Fibromyalgia, a UV sensitivity, missing stomach enzyme, GERD, IBS, delayed digestion so my body doesnt even start breaking down the things I eat till they ahve started to rot inside me, i'm missing some organs because they went toxic (The non-vital ones clearly), a damaged immune system from my mother's cancer treatment when she was pregnant with me, early signs of arthritis in my hands at 25, and a gnarly light sensitivity. They can be rough to handle sometimes even if I don't believe in letting them define me or my life.

I can't count the number of times people tell me to suck it up when I have a flare ups and that I "don't look sick". It can be frustrating and makes it hard to get through the day when you are constantly being invalidated. I actually had my boyfriend of 8 years watch this video with me, he got a little teary eyed. He is someone who is always trying to understand the struggles of the types of things myself and others I know in similar boats have to live with and it always helps to hear it from someone outside his world too.

[AniaR]

it was hard for Sean to understand my sickness too because when I met him I didnt have my diagnoses and was trying to be and act normal. Then I got so sick, so fast and it affected all aspects of our relationship. We spent so much time in emergency. we even went to counselling about it to learn how to cope with him being a caregiver and me being sick!

[Saelyyia]

Same here, minus the counseling. He just spends alot of time asking questions and talking to others who deal with their SO's and chronic illness. I also have a friend who works for TheMighty.com and she loves to send articles are way that can be very eye opening. Its hard, but it is definitely doable. The fact that you are both open about the reality of your situation, and still fighting to keep the life you want and do what you want is very inspiring. I first came across mermaiding at a point where I couldn't walk and I had just been diagnosed at 18 and though my life was over. (Silly teen mentality) Between your work, and that of some others I have followed for years in different communities I definitely hold you as a large inspiration when I have a bad day or I question if it is worth fighting the conditions. Thank you for sharing your strength.

[Slim]

I experienced this same exact scenario in high school when I was having my growth spurt from heck. I was fine before and after that growth spurt.


I have heart issues too! We've done extensive tests on it, but the doctors are puzzled. They are aware it is easily aggravated thanks to a 30 day monitor, and tell me to stop if it starts hurting badly. I generally didn't listen until I pushed myself too hard and blacked out.

[Mermaid Kane]

I experienced this same exact scenario in high school when I was having my growth spurt from heck. I was fine before and after that growth spurt.

Unfortunately that is not it. Already looked into it. :(

[DancingJohari]

And my cold is not a cold. It's bronchitis. Ugh. Back on antibiotics and waiting for the ability to breathe without that burning need to cough to return.

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[AniaR]

yep. i've got an ear infection now. lol

[DancingJohari]

Feel better. Had a dr yesterday with a sense of humor. I asked him if they could just give me new lungs. His response "Yeah, we've got a set in the back. Give me 5 minutes, we'll hook you up!" I needed that, because after a solid month of being sick, I needed the humor.:)

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[Princess Aegean]

Just had my gallbladder taken out after eight years of chronic pain all the time. Wish that could be a solution for all you guys too! Hang in there!

[Saelyyia]

I've had mine removed. It helped but it was just one small problem in a see of them. I sure don't miss it though.

[MermaidAuquita22331998]

I have fibromyalgia I also have scoliosis but I’m still trying to wait near pool [emoji474] time to swim [emoji2113]


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Mermaid [emoji3377][emoji2532]*[emoji3601] Auquita

[Cheydub]

That was beautiful! I have a condition called sinus arythmia, which is dr talk for "irregular heartbeat"

I also have asthma. It used to be really mild, but lately, It's gotten alot worse. If my heart rate goes too high, I run the risk of passing out. This means that exercise is hard for me. I have figured out over the years where my danger zone is. My asthma is currently being treated with an emergency inhaler, nebulizer treatment and a steroid called Prednisone. In a week, I'll be switched over from prednisone to symbicort.

Bcc ecause of all this, I am very prone to head colds, respuratory infe tions, bronchitis, pneumonia, sinus infections and anything else that decides to attack my respiratory system, including flu and flu like viruses.

Right now, I am javing round 3 of respiratory illnes which started around thanksgiving. Because I am alkergic to certain antibiotics, and because weaker ones no longer work for me, I'm very limited on what I can take for an infection. I'm 41 years okd, married with 3 kids who are special needs. What's a day off? lol.

Thank you, Raina, for sharing your story. It helped me to realize that I am not alone.

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I’m sorry to hear that someone else deals with these issues too but glad to not feel so alone! Although i stopped my powder inhaler because i had a weird tongue swelling reaction to it[emoji52] now i just keep my emergency inhalers on hand and avoid the cold! Or extreme heat:/ basically I’m the youngest person at all my dr visits lol. But mermaiding with these issues seems to be challenging because it’s a full body activity and holding my breath isssnnttt easy anymore:/....


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[Cheydub]

yeah I struggle with cardio too, hurts my neck where I have my pulse which I know is weird haha! I do weight lifting!

Me too!! Ill stop and put my fingers there and I swear it’s like a vein is gonna blow or something


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[Cheydub]

It’s nice yet sad to know I’m not the only one with these ailments:(


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[Mermaid Mia]

I too have heart problems on top of asthma. There were a few years there where my meds canceled each other out, so if i wanted to exercise i had to choose whether i wanted working lungs or a working heart. I practically slept though my junior year of highschool and still get sick super easily cause my body is just overworked. I got very lucky in that my family has a history so my doctor immediately knew what was going on. I don’t tell people often cause it feels so strange to just be like “yeah my body does not work correctly but you would never know”. Honestly you are such an inspiration to me Raina, and everyone on this thread. [emoji3590]

[MermaidAuquita22331998]

Also had open heart [emoji3531] surgery 3 times knee surgeries 4 times I had a metal vowel


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Mermaid [emoji3377][emoji2532]*[emoji3601] Auquita

[tealmermaid]

It's a relief to hear that it's not just me with these medical issues. I am dealing with Stage 4 cancer (chronic but no longer terminal) on top of a bunch of hereditary autoimmune issues. I don't get a whole lot of fun out of life because my immune system hates me.

I can't even swim any more since I seem to be allergic to the standard pool chemical cocktail. I am a permanently beached mermaid.

[Mermaid_Auquita_123]

Dear Raina
I have a Heart Defect a very rare one De George Syndrome also Fibromyalgia on top of Chronic Pain sorta like you I have so much pain sometimes so badly I can’t sleep


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[SirenGita]

I just want to send love to all you fellow sufferers <3 hang in there <3