Living in The Fire Swamp of EDS

Or

Fire Spurts and Lightning Sand and R.O.U.S.’s! Oh, my!

The Princess Bride is a true classic and one of the best movies ever (IMHO).  You might think me crazy but I have come to realize this fan favorite contains a helpful illustration of life with EDS…

You remember the Fire Swamp – it is where Westley and Buttercup escape from the frying pan into the fire and where Westley tries to convince Buttercup that the very real dangers (Flame Spurts, Lightening Sand and Rodents of Unusual Size, aka, R.O.U.S.’s) they face are no big deal.

 

 

At first, living in the Fire Swamp, like EDS, seems impossible (inconceivable, even) and downright terrifying. You hear all the horror stories about it and you start to believe that it would be impossible to come out of the Fire Swamp alive, let alone unscathed. The dangers, regardless of how Westley gallantly tries to spare Buttercup, are very real and require constant vigilance. They are intimidating and overwhelming when you first encounter them…

There are Flame Spurts – jets of flame that spurt up, setting fire to anything nearby. The Lightning Sand is formidable – patches of quicker-than-quick sand that immediately engulf and bury the unwary. And, last but not least, the Rodents of Unusual Size: enormous, vicious rat-like creatures that attack without warning.

Each of these seemed larger than life as Westley and Buttercup start navigating the Fire Swamp, but, as they encounter each one, they learn how to manage, overcome and defeat each challenge.

Flame Spurts? They make a popping sound before the flame appears, providing ample time to move out of danger. Lightning Sand? Buttercup unwittingly discovers what it is by stepping into it and being instantly buried. She and Westley aren’t likely to make that mistake twice after they both nearly die. R.O.U.S.’s? Yes, they exist. And, while they are admittedly vile, heinous critters that do real damage, they are not immune to flame spurts and the sword.

Oh, it is not easy to be sure – these threats are real and they take a toll. The couple is  battered and bruised as they exit the Fire Swamp and Westley boasts to the evil Prince Humperdinck that he and Buttercup could live indefinitely in the Fire Swamp. The unlikely (definitely inconceivable) fact remains, though: They unraveled the secrets of surviving the Fire Swamp.

The Fire Swamp experience is pretty much our everyday life with Ehlers Danlos Syndrome…

Dislocating joints, crazy injuries, muscle spasms? You quickly learn how to pop the joint back in place (reduce a dislocation), brace an injury, relax a muscle spasm and determine what needs a medical intervention and what can be dealt with at home. Yes, it hurts and it is scary but you learn to manage.

Gastroparesis, constipation, MCAS? You learn what you can eat and what you can’t eat, take Miralax regularly, and carefully manage the symptoms with diet and medications. Yes, it is challenging and can suck you in before you realize what is happening but you can manage the issues and find relief.

The neurological stuff, dysautonomia, seizures and other poorly understood co-morbid conditions that stalk EDSers? Like the R.O.U.S.’s, these are very real and very nasty but they can be defeated – or at least managed – with a great deal of effort.  The right meds, the right doctors and a whole lot of grim determination are the needed weapons.

Somehow, you get used to these unbearable (inconceivable, perhaps?) things and find a way to live with EDS, much like Buttercup and Westley found they could in the Fire Swamp. No, it isn’t a place where you would choose to live but if you have to, well, so be it. No, you probably will not come out of it unscathed but that seems less important than it did as you entered the Fire Swamp; there is something to be said for simply surviving.

Once you figure out the tricks of managing each of the threats, they become more of a nuisance than anything, although their danger is not diminished by that perception. Like anything in life, as we face a difficulty and learn how to manage it, that issue that was once a huge problem now becomes something less in its familiarity – a pain in the butt, an annoyance, a hindrance – something to deal with so you can move on to your regularly scheduled program.

A positive attitude like Westley’s certainly doesn’t hurt as you manage the impossible, although Buttercup’s dogged realism is a necessary counterbalance. There is no place in the Fire Swamp, or in EDS for that matter, for a Pollyanna but if you give up hope, there will be none left to find.  There is also no time to bury one’s head in the sand, Lightning Sand not withstanding, and ignore the dangers that surround you on all sides. Complacency in both EDS and the Fire Swamp is a really bad idea – yes, the dangers can be dealt with and they can be regulated to nuisance status, but they must be faced anew each time.

Life with EDS is a never ending balancing act – you put out one fire and another pops up. Or you fall into a patch of Lightning Sand or an R.O.U.S. attacks.  In the beginning, this is overwhelming and terrifying. Truthfully, I don’t think it ever stops being exhausting – just like living in the Fire Swamp would never cease to be exhausting. But, as you learn to manage, your confidence grows and you know that you are capable of living with the impossible; maybe even thriving with it. And, all of the sudden, one day, you realize that you are a pro and have the confidence to face whatever the swamp can serve up…

So, in the words of Miracle Max, “Have fun storming the castle.” Will it take a Miracle? Probably, but with a little perseverance, a lot of hard work, and a bit of luck, miracles can happen and the Fire Swamp can be survived.