What uses up your spoons the most?

This is something that for me, has only really become a problem in the last year. It hasn’t been a struggle I have dealt with since my symptoms began, like a lot of other chronic health suffers have, and I am grateful for that at least. I am more tired now than ever, but of course I am, because I now have a demanding job, work hard, have a bustling social life, a relationship and the responsibilities that come with being an adult. Add the chronic health issues into this and it is an exhausting bundle of things.

Living with chronic pain and dealing with an abundance of symptoms every day is incredible, and people who do it, no matter what the parameters of their doing it are, should be rewarded endless praise and support. Not that they need it though, spoonies know they have to live their life, we don’t ask for a medal on a daily basis, we just get on with it.

*Just in case anyone reading is this unaware (like I was until about a year ago) spoonie is a term used to describe people with chronic illness. The idea behind it being that we have a certain number of spoons each day, and these get taken up by various activities until they run out. Once they do run out, essentially the person has little left in the way of energy and tolerance.*

So this is, for me, and I would be interested to hear what others find, the list of things that use the most spoons.

-           Showering

-          Fitting in exercise

-          Commuting home from work

-          Cooking dinner

-          Going out after work

-          Chores (especially hovering, washing and changing bed sheets)

-          Engaging in long conversations, particularly those at work

-          Drying hair

-          Reading (weird, but it exhausts me!)

-          Getting ready for a day/night (hair, clothes, make up etc)

-          Shopping (food or clothes)

My list is getting longer and sometimes I sub things in and out. Showering seems to take up so much energy and the thought of it just makes me want to bury myself in my duvet. I know it is a very popular one among those who are trying to preserve spoons, and to the outside world probably sounds bizarre.

What uses up most of your spoons? 

The hypermobile guide to dating

First dates are notoriously awkward for any singleton. But
trying to find the ideal moment where you can surreptitiously slip into
conversation that your joints have a larger-than-average range of movement can
make forcibly shoving tens into your paramour’s hand after they’ve kindly
offered to pay for you seem fairly casual. There are various methods to do
this that never go amiss. Maybe you need a little stretch and your suitor
across the table gets the money-shot as your upper arm bends in parallel with your
shoulders behind your head. Perhaps your yelp will give it away as your hip
pops out on your romantic walk back to the tube station. Or for the more subtle
of you out there, you can always try to explain why it is that you can never
stop goddamn fidgeting.




However, there’s no easy way to tell someone new that you’re
inhibited by your body’s ability to do too much within the first few hours of
conversation. Will they be frightened off? Will they become overly concerned
and insist on piggy-backing you everywhere? These things are hard to tell when
you’re still two relative strangers sipping overpriced cocktails in an
unnecessarily loud bar asking each other where you went to uni and oh my god
are you kidding my best friend went there did you know her it is such a small
world, etc etc.




For some of you out there, it may be easier to, quite simply,
not bring your hypermobility up. But I think it’s essential to mention it. It’s
part of you, it dictates your life and I think the honesty can be somewhat
refreshing. It’s not a call to delve into your life story, but the longer it
goes without being mentioned, you’re missing out on a personal detail that may
even help someone get to know you better.




Looking back, I’ve tended to treat my hypermobility as a bit of
a joke on a first date, and if I’m feeling particularly daring, I’ll start
bringing out the big guns. Read your recipient, of course, but it’s hard for
someone not to be a little bit intrigued by “I can unhinge my jaw like a snake
and I can get my leg over the back of my head” .Because hypermobility can give
you a sexy competitive edge, so shake what yo mama gave you. With caution, of
course, you don’t want to put your back into spasm.




But what if you end up back at theirs? What if they start taking
your top off? What if they see the stretch marks and automatically assume
you’ve already had seven children? Chances are you’re being overly worried and
they won’t give a shit because you’re being kind enough to sex them. If not,
then move on, they’re probably a bit of a dick.




Sex and hypermobility, however, can be a bit risky at the best
of times, even more so when it’s the first time. It may seem easier to pretend
that you were moaning with pleasure and not pain at the way your leg just bent,
but the cold light of morning can be especially chilly when you quietly creep
out of bed to rescue your pants and you collapse on the floor as your hip
goes into post-bang rebellion. Own it. Don’t be scared. Phasing of your new
beau can be minimised by detailing your predicament beforehand and is my
recommended plan of action. Otherwise explaining why you can barely stand as
you awkwardly hobble back into your tights might send them into a spiral of
guilt and you into an Uber to avoid embarrassment.




This is all worst-case scenario stuff, of course. No matter how
barren Tinder may seem, there are decent people out there who will understand
that you can’t walk as quickly as them or you need a little wiggle when you get
up to put everything back in place. You’ll find out fairly quickly whether
you’ve found someone who can support you, both metaphorically and physically.
It’s easy to still feel guarded, occasionally even like a burden, or like your
hypermobility limits potential adventures. Talk about it together. Work out
plans where you can have fun without wanting to die and let them help you. And
for the record, using an intimate hug as an opportunity to stretch your back
out is the best possible way to kill two birds with one amorous stone.




Massive thanks to Anna Hallissey- (@The_Hallissey on Twitter)
for writing this contribution post. 

14 sort of useful and fun things being hypermobile is good for

1) Reaching the bottom of a Pringles tube.

2) Shaking cocktails.

3) Reaching into your rucksack while it's still on your back.

4) Freaking people out for fun on public transport.

5) Baton twirling.

6) Back scratching.

7) Fitting onto packed tubes.

8) Seeing what's going on behind you.

9) Picking things up with your feet.

10) Turning things around in your hands to be the right way up when you're carrying too much.

11) Moisturising hard to reach bits.

12) Draining Pasta. Fancy pan-to-colander work.

13) Getting out of small spaces.

14) Turning a steering wheel.

EDS awareness month- Taking a break from chronic life

So It's been a while since a post appeared on this blog. I've been distancing myself from thinking about EDS and everything that comes with it lately.

I've been having a lot of appointments about symptoms that may or may not be related, so I can't completely forget about it.

As it's EDS awareness month I really wanted to write about stress. Being chronically ill, as this blog has covered many times, comes with enormous amounts of stress. My stress reached a scarily high level recently, spurred on by worrying about my health and waiting for results and doctors to reassure me. Chronic pain is basically impossible to have without also having a lot of stress. The combination of everything you have to deal with is a perfect storm of mental unrest.

Something I feel has become important to me and that I feel people should try if they can, is creating some distance. It's not that easy for everyone, because my symptoms are much milder than a lot of others, but it can be done. I started by hiding groups I had joined on Facebook, and not opening links about sad stories of death and patients suffering or how the new government will impact healthcare. I just couldn't read anymore. I also stopped talking about it. Just for a week, I didn't mention it to anyone at all. I still have pains and aches and massive clouds of brain fog that I would usually moan about but I decided to try and remove myself from being a person with EDS.

It worked. I felt calmer, less worried, less scared and started sleeping a little better. I also stopped googling things related to EDS and checking Facebook groups and Twitter for symptoms that sounded similar to mine.

My geneticist mentioned that a lot of people with EDS become fixated on finding people similar and with that comes more anxiety and more concern about symptoms you might not even have yet. I told her all about this blog and how much I had gained from it, and also about how I felt I was too wrapped up in it.

Her advice of having a short break was completely ignored at first. I basically just continued as I was and carried on getting more and more worked up. I almost cancelled hospital appointments in fear of more bad news and that's when I decided it was time.

'Removing yourself' from something that pretty much runs your life is no easy task, but even if you can do it for a day, it's so refreshing. Hiding social media groups or not contributing to awareness for one week doesn't make you a bad person. Everyone needs a break sometimes. We have breaks from work and breaks from people, so since chronic illness is a full time burden, surely we're entitled to a break of sorts from that too?