This is an off-topic post, although I may have found a way to squeeze in a penguin anyway. The reason for this post is that May is International Ehlers-Danlos Awareness month.
If you're a regular reader, then you probably already know that I was diagnosed with Hypermobility type EDS last year, after a lifetime of symptoms, and a decade of rapid decline in my health. EDS isn't well known, perhaps because it's believed to be quite rare. It's not rare, but it is variable, and in many cases the symptoms can be managed by early diagnosis and lifestyle choices. Unfortunately, my own case is typical in that most people don't get their diagnosis until their symptoms become much more severe, and by then it's too late to repair the damage.
However, many other people have written many very excellent articles on the subject. In the last 3 weeks I've read at least one article each day detailing the many and varied, unpleasant and debilitating symptoms of EDS. I absolutely don't want to detract from anything these people have written, but right now I'm feeling that I'd like to lighten the mood a little...
5 dubious benefits to having EDS:
1) You were in your 30s before you really understood the requirement for these:
I'm perilously close to 40, but there's still not a spot on my body that I can't reach with my own fingernails, or an ordinary sponge. Despite being called "double-jointed", "inhuman", and "freaky" throughout my childhood and teens, it never occurred to me that I was actually so much different from the average human that they genuinely needed special tools to achieve what I could do so easily. When I learned about EDS I finally realised that it was me that's different, and "normal" people need to do hours of yoga to maintain the sort of flexibility that I take for granted.
2) Position of the Fortnight is actually physically possible for you!
In my first year at university there was a wall in our student flat dedicated to "Position of the Fortnight" from More magazine. When a new position was added, there was always some discussion about the practicalities of each depiction. I quickly learned that the selection I considered to be achievable was far greater than that of my flatmates, and the only impossibilities that we regularly agreed upon were those feats that required a range of motion from the male genitalia that it is not capable of when "ready for action".
Of course, I have since learned that "achievable" and "enjoyable" are different things, but it's always entertaining to try something new, right?
3) You can usually avoid the toilet issue on camping trips.
One of the less talked about aspects of EDS is the gastro-intestinal part. Because the collagen in our intestines and blood vessels is faulty, the whole lot sort of sags inside us, which results in slowed intestinal transit. Often this really isn't fun, but it can have its advantages. If you plan your camping weekend well enough to be sure that it's not going to fall during that time of the month (for some reason having a period has dramatic consequences for the EDS bowel, and you really don't want to be far from proper sanitation when it does it!) and you take what measures may be necessary to ensure that you, err, Go, before you go, as it were, then you can be pretty sure that you've got a few days when you don't need to share the bears bathroom.
4) No fighting with fastenings.
In the changing rooms at high school I first encountered other girls fastening their bra at the front, then performing this strange wriggling manoeuvre to get it into the proper position. I couldn't work out why they would do that. Then later in life there were boyfriends asking if I needed help when fastening the zip on a party dress too. Until I reached the stage when repeated dislocations of my fingers means that often I can't grip the zipper-pull, I never needed this help.
I will say though, for other young ladies who may be reading this, just because you can do something, doesn't mean that you have to! Sometimes letting your partner help you into the pretty dress that they may want to help you out of later is part of the bonding and romance of a relationship. Being somewhat of a socially awkward penguin, this fact took me far longer than it should have to work out!
5) You don't need to move your furniture so much.
See, I said I'd get a penguin in here somehow!
When I was about 11 years old I was called out of class by my head teacher. I was scared and confused, because I was a boring, and scrupulously well behaved child, and this had never happened to me before. However, it turned out that someone had dropped the key to the school HiFi(*) cabinet inside the HiFI, and nobody could reach it without dismantling the entire thing. So they wanted me, with my freakishly small and bendy hands and arms to reach inside to retrieve it. Since then I've repeatedly found that it is much easier for me (or my sister) to stretch, bend, and contort ourselves to rescue items dropped in hard to reach places, than it is for our friends or family to shift the sofa!
*For the benefit of anyone under 25, a HiFi was an enormous music playing device made up of separate sections for radio, cassette tapes, CD players, turn tables, and amplifiers. It stood about a metre tall, and took up more space in the 1980s living room than the TV. They were expensive tech at the time, so if a school owned one, they locked it in a glass-fronted cabinet so nobody could push any buttons.
Further information
You can find out more about EDS, how to get help if you think you or your child may have EDS, or how to help with raising awareness, and funds for research, from the following sites:
Thank you very much for reading. I will be back with more yarn-based goodness soon! Take care my dears.
