Belinda Taylor: Would you Rather…?

This ‘Meet My Peeps’ post comes from one of my favourite writers, Belinda Taylor.  A former ICU Nurse, and general Science boffin, mother of Milly the Cat and Monty the budgie, and wife of Chris; Belinda has completed a Diploma of Accounting in the time since her diagnoses.  She has post viral POTS complicated by Myalgic Encephalitis. I don’t think she’s been formerly diagnosed with a wicked sense of humour, but she’s got one.   You may recognise her style from the excellent spoof report she wrote for this blog recently, ‘Breaking News’ all about a cure for chronic illnesses.   And if you are working on one of those 8 Great Ways to Live Well, and need something funny in your day, look no further than Bel’s two pieces.  She makes me smile this girl!

Photo of Belinda Taylor and the quote: "Having a chronic illness of any sort is like a life changing game of 'Would you Rather?'"

Some friends and I used to play a game called “Would You Rather?” at work. Being nurses, it was always pretty easy to find something appalling and stomach-churning to test where your limits of tolerance were. Poo in the eye was always a favourite.
“Would you rather… poo in the eye? Or, to eat a teaspoon of sputum?” See? We were pretty gross.

Having a chronic illness of any sort is like a life changing game of Would You Rather? Would you rather, have your mind deteriorate and a healthy body? Or, have a functioning mind and have your body crap out on you? I’m not sure the first option would be a whole lot of fun, unless your deteriorating mind made you hallucinate all day that you were being fed chocolate macarons by Jamie Fraser from Outlander, while lying in a bubble bath.

Having POTS and ME, I can 100% say that the second option isn’t a bundle of laughs either. I would much prefer poo in the eye. Having your mind say “Yes!” while your body says “Hell, NO!” is a lesson in frustration that is played out in the interaction of your body and mind every day. If my mind and body were once friends, they would have broken up by now and only spoken on birthdays and the occasional ‘like’ on Facebook.

A typical day might go something like this:

Scene: Our heroine is lying in bed in the morning, having just woken up.

MIND: Ugh, I really need to go to the loo!*

BODY: Ha! You know I’m going to make you face plant if you try and get up before you’re well hydrated and have taken your meds

MIND: -but if I drink more, I’ll need to go to the toilet even more!

BODY: Well, ok, if you want to risk it…..

MIND: Fine, you win. I’ll drink this bottle but I’m not waiting for the meds to kick in.

BODY: OK, I can live with that.

erm, what would I know_!(2)

Our heroine commences a wobbly walk down the hall to the bathroom for sweet, sweet, bladder relief.

MIND: I suppose now we’re up, you want to be fed?

BODY: Well, I’m not too fussed. I’d be willing to let you do something else first. Feed the cat maybe, put some washing on.

MIND: Wow, ok, thanks. I’ll get onto that then.

1 minute and 43 seconds later…..

BODY: FEED ME NOW!!!!  Stop what you’re doing immediately and feed me! I’m nauseous, I’m dizzy, I must be fed right now or I really think I might die!

MIND: But you just said-

BODY: –I know, but now I really have decided that feeding me would be the best thing.
I’m getting hanGRY**!

MIND: Well, ok, if you’re going to be like that about it, here, have some breakfast.

BODY: Ahhh, thank you. I love you.
Thank you for feeding me and looking after me with this delicious food. You really are the best.

MIND: You’re welcome-

BODY: -Gah!! What is this?? Now I have food in my belly, I have to do work to digest it?? Seriously? Well you know what this means, don’t you? I’m going to have to steal all the blood and give it to the stomach. Sorry brain, you miss out this time. And heart? Yeah, you’re going to have to work really hard to get the pitiful amount of blood I’ve left you up to the brain. Sorry about that, but I really have my work cut out for me here with all this digesting.

1 hour later

MIND: Do you think it would be ok if we moved now? Maybe we could try a bit of exercise?

BODY: Oooh, exercise, yes that sounds like fun. What shall we do?

MIND: Maybe we could just walk down to the corner and back again.

BODY: Yeah! Let’s go. This sounds amazing. Woo Hoo! Exercise here I come.

Our heroine makes it to the first corner down the street.

BODY: I’m feeling awesome. Can we go further? I’m loving this! I feel so freeeeeee. Let’s go to the next corner. The next corner really would make my life complete, you know.

MIND: Are you sure? You always say you’re quite tired after exercise. I don’t want you to overdo things. I’m trying to look after you. But the next corner would be pretty amazing…

BODY: Yes! Let’s do it. This is… easy.

Our heroine walks to the next corner.

BODY: Um, yeah, sorry about this, but I don’t feel so good. I think the next corner might have been a bad idea.

MIND: But, you said you felt great, you were keen to go.

BODY: What would I know?!

MIND: Well, quite.

Our heroine inches her way back home, to spend the next few hours (days/weeks) cursing her stupid body for being a bit of a tool***.

What would you rather, poo in the eye? Or chronic illness?

 

NB:  Translations below for non-Australians/New Zealanders…
* loo = toilet
** hangry = hungry +angry
*** being a bit of a tool = being a bit of a dick

 

 

Breaking News.

There are many ways to cope with Chronic Illness.  One of my favourites is to find the funny amongst the daily grind.  Just recently, I’ve talked on here about the importance of being careful about pseudo-science.  There are so many dodgy people out there trying to take advantage of the ‘Dysautonomia Dollar’ (the illness dollar it should really be called because it is not just a problem for our community), promising cures. Suggesting they can cure things without adequate studies or proof.

Recently, some of my friends with Dysautonomia were chatting together about pseudo-sciencey articles.  They’re quite a scientific bunch these girls, most worked in various disciplines of Medicine before their diagnosis, some are still studying towards their qualifications.  Then the brilliantly funny Belinda Taylor wrote this spoof article.  I loved it so much I begged her to let me post it here for you.

It’s breaking news!  Geddit?!  Over to you Belinda for this astonishing ‘research’ finding:

NEW RESEARCH CLAIMS DELICIOUS

“There are a growing number of patients worldwide with various chronic illnesses that can leave them unable to participate in work, social and family lives. Scientists in Lindtville, Switzerland, working in conjunction with chocolatiers, have recently discovered a tasty breakthrough that may allow patients with a chronic illness called Dysautonomia to re-enter the workforce and society.

By altering the methyl groups on Theobromide, a compound found in chocolate, scientists have been able to get it to have the opposite effect on the human body, which will prove beneficial to those with Dysautonomia. In its natural form, Theobromide acts as a vasodilator and a diuretic, however by altering which nitrogen atom the methyl group is attached to, they have been able to make a molecule, which they have called TTITBITO (Theobromide That Isn’t Theobromide But Is The Opposite), that acts as a vasoconstrictor and anti-diuretic.

As an added bonus, making chocolate with TTITBITO makes it even more delicious than it currently is. Dr. Fietzelwiener, the lead chemist on the project, described the taste as “even better than a crème brûlée that had been dipped in ambrosia and topped with bacon.” Because of the discovery, food scientists have needed to amend the current range of recognisable tastes of sweetness, sourness, bitterness, saltiness and umami (pleasant taste) to include uberumami. Currently TTITBITO chocolate is the only food in the uberumami category.

Early studies with Dysautonomia patients using TTITBITO chocolate have proved promising. In a study of 131 people with dysautonomia, 98% of the dysautonomia patients reported complete resolution of their symptoms. The study was conducted in a blinded manner with the patient cohort being split into two. One group was given TTITBITO chocolate for a fortnight and the other group was given ordinary chocolate. The groups then swapped for another two weeks. In order for the patients to not be able to taste the difference between the two different types of chocolate, they were made to eat chilli powder prior to ingesting the chocolate. The 2% of dysautonomia patients who were not cured was deemed due to the subjects forgetting to take the chili powder prior to tasting the TTITBITO chocolate and eating their entire two week allocation in one sitting. Sadly, they died as a result.

The study participants have been allowed to continue to use TTITBITO chocolate to keep their Dysautonomia at bay. In interviews that were conducted with the participants after the completion of the study, they were singing the praises of this new breakthrough. Mrs. Hornswaggle, 42, from Hicksville said, “My taste buds are singing and my feet are dancing!” In another surprising development, post study interviews have also found that the positive effects of TTITBITO chocolate are increased for patients by eating while laying reclined on their couch and watching a movie of their favourite genre. One participant who watched the movie Chocolat while undertaking her TTITBITO treatment, says her libido increased by 362%. Unfortunately, later that week her husband was admitted to hospital for bilateral hip replacements.

Regulation of this new and exciting medication will need to be tightly controlled as there are fears that a TTITBITO black market could develop with people desperate to get their hands on this delicious treat. It is likely that patients will need to go to TTITBITO clinics and be dispensed a weekly dose to lessen the occurence of overdoses. It is also feared that children may be easily hooked on TTITBITO by unscrupulous parents using it to cook children’s chocolate birthday cakes”

Belinda Taylor: PseudoScience Correspondent for the Chronic-ills of Rach.