Merfolk who cope with chronic illness and still try to work

[AniaR]

(Tagging Iona, I am hoping you will weigh in on this too!)

I've realized after my time on here that so many members in our community deal with some form of chronic illness. A shocking amount TBH and it makes me kinda sad.

I thought it would be nice to have a space where we discuss tips and tricks we use to overcome our different health issues so we can work mermaid jobs.

I know many recreational mers have chronic illness too, but I feel like it's hard when you decide to start a mer business because it's not easy to cancel or back out of a mer job just because you don't feel well.

Mermaid swimming can be really empowering, but can also flare up health issues too. I am thinking about adding a section in my book that's more of a reflective piece as well, so seeing how members feel is a good way for me to get an overall idea.

If you didn't watch it yet I made a video about the topic here:


https://www.youtube.com/watch?v=zhqlOkr1nHw


Since making that video I was in a car accident and have been coping with a head injury (concussion) on top of my usual chronic illness. It's funny I have come this far despite my every day chronic pain and fatigue, but a concussion has thrown me for a loop and I am really struggling.

What has been YOUR experience coping with chronic illness? How does it affect your life as a mermaid? Your business? What are your fears? What do you do to try to make it easier for yourself?

[Mermaid Lily_Pad]

I have never been shy about sharing my health issues. A brief rundown, I have PTSD, Fibromyalgia, IBS, Stage 3 Endometriosis that led to a full hysterectomy at 33, and the worst end stage Intersistial Cystitis with Hunners Patches. Truth be told my chronic illness is one of the main reasons I went with a quick tail maker rather then wait years for one of the others. I have no idea how long I will be healthy enough to do this.

I have also also been on every medication on the planet and every delivery method including giving myself injections to having to catheterize myself. It puts a bit of a damper on swimming LOL.

That all being said, I have taken steps to try and improve my quality of life. I work a very physical job as an LMT and am on my feet 7 or 8 hours a day at work. I have also lost around 30 pounds.

I think the one thing that has helped recently was that I started taking CBD oil 2 to 3 times a day. It has no THC in it so it is legal in all 50 states. It's supposed to help with the inflammation that my autoimmune issues cause. I only just started taking it maybe a week if two ago and truth be told I have not had a major flare since I started. Whether it's dumb luck, or the oil I don't know, but I don't intend to stop taking it until I find out for sure. I get it from etsy from a store called Dutch Natural Healing.

[Echidna]

I really dislike talking about my illnesses, because it's very depressing to see it written out.
But yea, I can count the days (or just hours) during which I didn't feel ill in the last decade on one hand.

The worst thing about chronic (or uncurable) stuff is that it's not going away.
One can kind of deal with a bad state and pain for a short while, knowing it will eventually get better.
When you know for certain that it's with you every day for the rest of your life (or even worsening, in the case of ongoing illnesses), that takes a heavy toll not only on your body (drugs and therapies), but also on your mind.

People who have to deal with chronic illnesses tend to have more fears than healthy people, because their state is so fragile.
The worst thing for me is the pain.
I stopped modelling a while ago because someone who is in pain does not look good.
If you look closely on some of my pics, you can see it in my face because intense pain destabilizes the facial expression (not sure how to put this).

So how do I cope?
Most importantly, planning the smallest detail beforehand and making sure I have enough time to rest up after a performance.
That means; 1 or 2 performances per week, maximum, with 3 days in between.
This time is sorely needed, and sometimes I'm bedridden, especially if the water was too cold.

I also make sure I have backup in case I have to cancel.
With many of my routines, there is no one who could be my backup though, so I'm always afraid to book a gig too far in advance.
So far I didn't have to cancel a job, but I missed every single mermeet we had in this country, even the one practically taking place in my backyard, because I simply felt too ill.

Then there are friends and family.
I heavily rely on them to help, and honestly I couldn't do squat without them.
Maybe one day I get better, perhaps if a new drug is invented that helps with my issues, I could get more independent and accept more jobs.
But I'm not counting on it :(

[Winged Mermaid]

Been auto restoring this reply for days becuase I have so much brain fog lately I'm not sure how to make words work :P I'm also trying to think of words to describe dealing with it all without coming off as a suuuper big bummer. I usually don't talk about my health issues in the mer world, maybe becuase I like to pretend I have it all together, or because I like to think maybe my mersona doesn't have them? Something like that.

So, let's see, the list, lol. Um, I wrote a tumblr post about it when I got an ask on it, you can see that here (http://mermaidiona.tumblr.com/post/110083503187/you-dont-have-to-answer-this-but-what-health). (TL;DR: diagnosed with narcolepsy, delayed phase sleep disorder, IBS, fibromyalgia, interstital cystitis, pelvic floor dysfunction, GERD, scoliosis (chronic back pain), migraines/tension headaches, SAD, major depressive, general anxiety disorder, tinnitus, and hypoglycemia.) My first chronic illness manifested enough for it to greatly interfere with my life a age 12. So far, every couple-few years, another illness or condition tends to crop up.

Right now the biggest thing keeping me from furthering my career is my sleeping disorders. Right now I'm not getting to sleep until 7am and waking up at 4-5pm. If you don't know anything about Delayed Sleep Phase Disorder, it's really debilitating to try and run on a "normal" (or as I say, "daywalker") schedule. Most gigs are in the morning. I simply can not take them. I would have to stay awake all night and into the next day to get there on time. Which I physically can not do- thanks to narcolepsy, I could have sleep attacks and can fall asleep mid-walk or mid-swim. It's very dangerous for me to attempt an all nighter. Not to mention lack of sleep also makes my other conditions to flare- resulting in pain, sometimes massive debilitating pain.

I have tried every single treatment for this circadian rhythm disorder, and then a lot more. I have gone above and beyond, but even sleep specialists don't know what to tell me. In the end, it's in my actual DNA that I'm "set" to a night owl. A recent very well researched article emphasized that that DNA is in every single cell in your body, controlling various hormone and neurotransmitters levels that controls everything in your body and brain. So when you go against that, terrible short and long term health consequences happen. Even leading to things like heart disease, diabetes, cognitive degeneration, body wide inflammation possibly manifesting in the form of other chronic illnesses, and more.

Because I can't take many gigs because of my sleep issues, I'm not getting much exposure. So then I don't get that word of mouth which, from what I've seen and experienced, is a lot more powerful than social media.
I'm thinking lately that if I want my business to go anywhere, I'm probably going to have to team up with other mermaids that can cover the morning gigs.

But even hobby wise, my health still interferes. The constant exhaustion (doctors say a normal person would have to stay up 2-3 days straight to feel as tired as narcoleptics feel every day), the constant pain, feeling weak and ill... I just do what I can. I just all the medications and other treatments I can to function at a decent level. I amp up with preventative measures before a swim. There are times where after one swim or shoot I can not carry my tail I'm so weak. Sometimes I will have to have a week to recover. Sometimes I am bed ridden for a day or two after because of the huge backlash from the exertion.

But I'm sticking with it, because it's what I love, and I believe it will push me to better health in the long term. Wow I tried not to be a bummer in this and I utterly failed..oops. Ah well, that's all my brain's got right now!

[Winged Mermaid]

I have never been shy about sharing my health issues. A brief rundown, I have PTSD, Fibromyalgia, IBS, Stage 3 Endometriosis that led to a full hysterectomy at 33, and the worst end stage Intersistial Cystitis with Hunners Patches. Truth be told my chronic illness is one of the main reasons I went with a quick tail maker rather then wait years for one of the others. I have no idea how long I will be healthy enough to do this.

I have also also been on every medication on the planet and every delivery method including giving myself injections to having to catheterize myself. It puts a bit of a damper on swimming LOL.

That all being said, I have taken steps to try and improve my quality of life. I work a very physical job as an LMT and am on my feet 7 or 8 hours a day at work. I have also lost around 30 pounds.

I think the one thing that has helped recently was that I started taking CBD oil 2 to 3 times a day. It has no THC in it so it is legal in all 50 states. It's supposed to help with the inflammation that my autoimmune issues cause. I only just started taking it maybe a week if two ago and truth be told I have not had a major flare since I started. Whether it's dumb luck, or the oil I don't know, but I don't intend to stop taking it until I find out for sure. I get it from etsy from a store called Dutch Natural Healing.

I too have IC, I'm so sorry to hear you have to deal with that. Especially at such a bad stage :( Thankfully for me, when mine started manifesting enough to become a, "Okay there is definitely something wrong" level, I told Raina and she said "You have IC! Go to your doctor and start this diet right away". I'm pretty sure that without that I might have never figured it out on my own, and it often takes doctors YEARS to pin it down. By that time, it's progressed to much worse stages. So I am very thankful for her putting me on the right path quickly, otherwise it could have been much much worse for me. I've read a lot about the insane pain that goes with end stage IC, and my heart hurts for you to have to endure that.

I too was taking CBD extract for a while. I did a TON of research on it beforehand and found a really reputable company. But sadly they have gone out of business recently. I will have to check out the seller you mentioned! I have looked locally and all the places here have THC in them (because recreational cannabis is legal here) and I don't want that for a few reasons- one of them being I'm moving to a state where it isn't legal in the next few months. You have to be careful too, becuase a lot of CBD extracts are made from industrial hemp from China and have a ton of contaminates- heavy metals, pesticides, and other pollutants.

I will say that YES, CBD was a godsend for me. It doesn't make you high and doesn't hurt your digestive system. Unlike narcotic painkillers (which I absolutely loathe and won't take unless I'm at an 8 or higher on the pain scale) and over the counter pain meds. I can't even take OTC pain meds anymore, they've messed up my stomach so much I will have an IBS flare and become ill and in a lot of pain if I do. Narcotic pain meds not only make you loopy and tired, but also cause painful complications for me (narcotic induced constipation, which makes my pelvic floor throw insane spasm and pain fits).
The CBD helped my pain, my nausea (sometimes I get it constantly for weeks or months at a time), muscle spasms, ect. I found that if I took it a few times a week the frequency and intensity of my flares went WAY down. So yes, if you're dealing with chronic illness/pain and in a country that allows it (USA now allows as long as it's under I believe 0.3% THC, not sure about others), try it. Just do your research first to make sure you're buying from a reputable place that uses local and/or organic plants.

[Echidna]

delayed phase sleep disorder

I didn't even know that was deemed an illness :fallover:

but it's true it makes living a "normal" life, and working an average 9-18 job, impossible.

I have an internal clock that is completely independent from daylight.
My mother told me that even in the womb, I was awake all through the night and calm during the day, and she was already worried before I was born due to this :p

I was ill every week during my schooldays because I would be awake the night, trying to sleep, and had to get up in the morning just when I was getting tired, to have an exam.
Teachers would denigrate me saying I was on purpose playing ill to skip the tests.
Fun times.
College and Uni morning classes were almost as bad, but after that, it began to pick up because you can live with the condition with certain jobs.
Me, I worked at the theatre, where nothing starts before noon and performances are usually in the evening.

Working independently, or from home, can also be great.
Never try to force yourself into a "regular" rhythm, it will make you ill if you're healthy, and be extremely detrimental if you're already ill.

[Merman Andrew]

Echidna and Iona, I wonder if you could put a positive spin on your sleep disorder and promote yourself as a mysterious 'night mermaid', like you only come out of the water onto land at night? You could actively encourage events where you are booked to be held at night and do something special to make it different to a normal day event.

Sent from my HTC_PN071 using Tapatalk

[Winged Mermaid]

Decent idea, but I've looked into it and asked around to some other mermaids who have done night gigs. Kids aren't up at night (at lest not down for parties that time of day), so night gigs are adult entertainment gigs. Night gigs means that it either has to be a club with a pool (incredibly uncommon in the areas I've lived in), or a gig where the client is someone who owns their own pool (which also isn't common where I've lived).
Plus the vast majority of the time they're only interested in "adult entertainment"- aka toppless or stripper mermaid, which I am not comfortable with doing. Also I've talked to some mermaids who do/did adult parties and night club gigs, and there can be a problem with sexual harassment too. Which is not a good situation to run into when you're bound in a silicone tail. They told me the advice they'd give is to not do gigs like that unless it's at a reputable night club with good security, or things can get out of hand. Which those are pretty rare unless you're in some place like Vegas. :/ I always keep my eye open for opportunities. But for now I just hope and pray when someone contacts me for a gig, when I say I'm not available before X time, that they won't change their mind. But most of them do :(

[Echidna]

Echidna and Iona, I wonder if you could put a positive spin on your sleep disorder and promote yourself as a mysterious 'night mermaid', like you only come out of the water onto land at night? You could actively encourage events where you are booked to be held at night and do something special to make it different to a normal day event.


I kind of already do :)

I perform waterballet routines in a tail (although I'm often asked to do "normal" synchro swimming without a tail; I presume it has something to do with legs being visible then....),
so it's more a dance performance than a gig.
For a Halloween party, I was asked to only swim around in the pool at night and look mysterious xD

It's definitely less stressful than entertaining a bunch of kids, and I've never performed before noon, it's usually late afternoon/evening.

But as Iona said, you don't get as many opportunities to do this, as few people have a pool (and even fewer have one deep enough to do a decent routine in), and I know of zero clubs/bars in Germany which have a pool :p

[Mermaid Galene]

I haven't been on MN much in the past year partly because of very time-consuming creative projects, but mostly because of my chronic health issues. And yeah, it's a bummer to talk about it, but it's also important to give and receive support with others in the same boat. My current list:

• 30 years of migraines on average 3-4 days a week + long term health effects of dozens of preventive and abortive drugs taken for migraine over the years. Better now than it used to be thanks to menopause, better drugs, and alternative therapies (biofeedback, acupuncture), better understanding/avoidance of triggers

• Collagenous colitis in tenuous remission

• Irritable Bowel syndrome with bile acid metabolism disorder causing debilitating daily diarrhea/dehydration. Struggling right now to control this with bile acid sequestrant medication. And I am on an incredibly restrictive diet (low FODMAP). There are about 5 things in the known Universe that I can safely eat.

• Laryngopharyngeal reflux. This is activated by acidic food in the throat, so some of the few fruits and other foods I could eat on the low FODMAP diet are now impossible because they are acidic. I control this pretty well with diet. I am highly motivated to be rigorous with this diet, because I am a singer, and this form of reflux damages the vocal cords.

• Unpredictable, recurring intestinal torsion. Lesser episodes are controlled with bowel relaxing drugs. When those fail, it's off to the ER, where they give me morphine for the unimaginable pain and also to try to relax the bowel so it untwists. And they line up a surgeon in case the torsion doesn't let go on its own. Once that characteristic pain starts, I have 4-6 hours before the bowel will go ischemic, then necrotic, then burst, then septicemia and death. (Needless to say, lol, so far I've avoided that worse case scenario!) When I travel, I always have to know where the closest hospital is and the competency rating of that facility, and I carry a standing order from my gastroenterologist for STAT imaging. Time is of the essence.

• Adrenal and thyroid insufficiency. Without artificial adrenal and thyroid hormones, the fatigue I experience makes me feel like a flattened piece of chewing gum on the sole of someone's shoe. It is a struggle to summon up the energy to be upright or to lift my arm. Before they began to give out, my adrenals were probably overtaxed from years of chronic stress. But, ironically, the nail in their coffin was the one water gig I have done as a pro mermaid. It was a truly delightful and enjoyable experience. I loved all the adoring children and swimming with my own little pod of groupies. But the low-chlorine pool (which was a plus going in) was unprepared for the 500+ turnout they had for the 2015 New Year's Eve party for which we were booked. At some point, probably in the water, I was infected with a herpes simplex virus (measles/mumps type, undoubtedly from a child) in one ear. That virus caused Sudden Sensorineural Hearing Loss. Fortunately, I learned what it was whilst researching my symptoms online and was able to quickly get the medical help I needed. But the only treatment is 5 weeks of massive doses of prednisone. And THAT pretty much destroyed my adrenals.

• Vestibular neuritis, caused by the same ear virus. This manifests as vertigo and violent vomiting for a day or two, followed by two months of constant nausea that gradually gets better over time. I've only had one major block of this, last year. Never know when it might recur, since that type of virus never goes away. It just sleeps for awhile.

• Electromagnetic hypersensitivity. I had no idea such a thing even existed until I was diagnosed by a functional medicine doctor last year. In a nutshell, electrical fields make me sick, triggering &/or worsening my migraines and gut issues and endocrine dysfunction. WiFi and microwaves are potent toxins for me. As you can imagine, that makes it a little tricky going into public spaces!

Well, that's my major health baggage. I actually do have some very positive thoughts and suggestions for dealing with chronic illness; I've been at this for 3 decades, and I've learned a few things. Gonna take a break right now, but I'll post more later.

[Echidna]

It's so disheartening to read what so many have to put up with.
Hugs to you all.

[Mermaid Enora]

I deal with vitiligo which is a chronic disorder but is different than most in that it doesn't directly cause pain to me.
However the extent of my case means that I can't be in the sun very long without burning horribly which then causes excruciating pain from the sunburn. Add sunlight reflecting off water and refracting through the water basically equals no outdoor water gigs. And very limited water photoshoots.
Also everytime I get even a minor burn my risk of melanoma shoots through the roof again and again.
And even when I'm not in the water sunscreen still doesn't always do its job because the white skin has absolutely no protection of its own at all.

[Mermaid Galene]

So, for most of my adult life I have worked in the performing arts. For decades, my chronic health issues have been a burden in a very public type of career, but over the years I have developed a multi-pronged approach to dealing with illness:

EDUCATION: When something goes wrong with my health, I research fanatically. In the old days, I had to physically go to a medical school library to do this, but now the Internet makes everybody's computer a gigantic research library. I actually have a graduate level (veterinary) medical education, so that helps me read medical journals. But anyone with the patience to Google and the ability to judge competence of sources can learn every detail about any medical condition and treatment you can imagine. The thing is, doctors - even specialists - are rarely up to date on current research, medical thinking, and new treatments, especially for chronic pain and other complicated conditions. I have found it essential to find doctors who are open-minded and not threatened by a patient with some medical knowledge. In fact, no doctor stays in my employ unless he or she is willing to at least consider the information that I bring to the table. We are a team, or we are nothing. I have fired a lot of doctors, and some of them from facilities with an excellent reputation! I only keep long term relationships with those that actually view me as a valued research partner as well as patient. Of course, the freedom to change doctors varies widely depending on insurance plans, etc. But every patient needs to be informed and to utilize every resource in her power to take an active role in options being considered for care. Sometimes that means going outside traditional western medicine to try alternative outlooks and treatments insofar as they can be afforded.

NEGOTIATION/ACCOMMODATION: It took me years to admit this to myself, but the illness itself is not only an enemy. It is an unavoidable partner in life decisions. Living with chronic illness necessitates a strange form of detente and negotiation. Sometimes the illness gets more of what it wants, and sometimes I get more of what I want. I have to always be willing to compromise. Right now, for example, I am excited about getting back to library storytime/music programs in my mermaid persona. I have a newly published kids' book, and I'm so looking forward to sharing that with my audiences. But my gut issues are really problematic, and until the new meds protocol settles in, I can't book a live appearance in a mermaid tail. I can't be too far from a bathroom, and I certainly can't get out of a tail and into a bathroom in 5 seconds flat. So the book tour has to wait. Score one for illness. Am I giving up on performing? No way! In current negotiations with my gut, I had to be willing to postpone my plans, but I WILL get back out there doing gigs as soon as I can.

Adjusting your schedule and expectations is certainly a lot harder when you're supporting yourself financially with public performances. I think the best strategy is to always have a back up plan, preferably someone who can do the gig for you if you just can't. And sometimes cancellation is the only option. That happened to me now and again as a pro puppeteer, and I found that the clients who weren't understanding about the situation were clients not worth keeping anyway.

The small scale negotiations with illness happen on a daily basis. "Okay, I really wanted to get mic'ed up, sit down at the piano for a few hours and get in a good, solid practice. But I am too tired to move, or control my voice, so instead of physically practicing, I'll lie in bed, think through the song, listen to a recording of it." Even that is productive. The brain is still working through the material.

And I negotiate with my illnesses by being creative about what I expect from my future as an artist. I had to give up puppetry because of medical issues. (My hand got kinda wrecked from the years of contortion and repetitive motion.) So then I thought, "What other art forms could I explore?" And that led me to mermaiding. And singing and writing. And now painting. And I face the worst case scenarios down one by one: "What happens if, someday, my intestinal illness never lets me perform before a live audience again? Well, then I'll produce all my performances for the Internet. Or I'll just concentrate on writing more children's books. What if I get to the point where I can't sit and work at the computer because of the EMF emissions? Then I'll sit at my desk and write with pen and paper. Or I'll direct my creative urges solely into painting."

I will negotiate. I will not surrender.

INSPIRATION/IMAGINATION/ARTISTIC CREATION: The Arts save me. The sicker I get, the more inspired I get. When I'm too sick to do, I read and learn and watch and listen and plan, plan, plan. Even if I'm bedridden with my head exploding, craving oblivion, in between the waves of pain I think about my artistic projects. I visualize the next step, what I'll do when I feel better. I create a mental scenario. I visit imaginary realms in my mind, places where nothing hurts as much. And when I'm impaired and miserable, I dive into my art in whatever way I'm capable. It's just a better place than the cold reality of sickness.

NATURE: I could not survive my raggedy body's incomprehensible whims and betrayals without connecting to the beauty of sky and water and trees and animals. Every day I give myself the gift of time spent outdoors, watching, listening, breathing fresh air. I sing to the birds at my feeders. I touch the wild plants of my prairie. I talk to the crows. And if I'm too sick to go outside, I lie in bed with the window open, stare at the ever-changing drama of the sky, listen to the song of life happening in the great big world of which I am but a small note.

SUPPORT: I rely on those who love me to help me through. I accept all forms of empathy, compassion, understanding and support that come my way. I ask for it when I need it. I am fiercely independent, an "own my own life" kind of gal. But I recognize my limitations, and I am so, so very grateful that I have family and friends, a loving spouse and companion animals to have my back. And if I didn't have them, I would seek out support. There are so, so many people with chronic illness. They all understand how sickness can choke and frustrate and taint an otherwise wonderful life. And this shared understanding is what helps us hold each other up.

So thank you, merfriends, for not avoiding this difficult topic. We can help ourselves, and we can help each other.

Hugs to you all! :group hug:

[Merman Andrew]

Wow that is such an inspiring post! Thank you Mermaid Galene for sharing and for your amazing positive outlook, in spite of everything you go through. Have you ever considered writing a book about your fight with your illnesses, because I think it would be amazing. The way you write is beautiful.

I can't even begin to imagine what it must be like to have a number of chronic illnesses like that but it does make us healthy people realize we should not take our lives for granted and make the most of every opportunity and experience that we can.

Sent from my HTC_PN071 using Tapatalk

[Mermaid Galene]

Thanks, leomar! I don't have much interest in writing about illness, though. When it's not in my face, I just wanna forget it exists and go do something interesting.