Genuinely think I have more salbutamol in my eyes than in my lungs right now, but I love my little neb, I really do. (Sadly I do not have sufficient hands/coordination to capture what happens when my blond!cat decides to try & snuggle me despite the neb but gets too close to the escaping vapour & - not unreasonably backs away, bleching, to wash off The Smell.)
Firstly, yes, absolutely, fully along for the ride. Will bring snacks. I currently have a LOT of food in the house for the first time in a while pity about ongoing lack of oven situation, but can’t win them all including quite the array of vegan junkfood. Cheese & onion crisps anyone? Mars Twilight bar? Piece of rocky road? Toffee?
Anyway, seafour, as you v kindly asked, my hobby, since my Ridiculous Body decided to steal my ability to play the oboe/flute & to sing = classical ballet.
For the instrumental bit, is simple as joint!fail: I just can’t hold either instrument for any length of time & fingertip hypermobility can be... unpleasant. The singing bit, I was a choral singer (because of the bit where clearly I wasn’t on for anyone actually hearing me sing); which led to the Bach Choir audition where I forgot how to read from Pure Fear - but the Director offered me a reaudition if I worked on sight-reading-sans-panicing... By the time they contacted me with the invitation to come & audition again I was a bit occupied with relearning how to speak (finally the constant throat infections & some vocal cord damage & a new level of Broken = Goodybe Speaking), but, you know, can almost persuade myself that between them being so keen [they do not do reauditions; witnessed farcical scene between director & his secretary who went a touch Lady Bracknell/handbag over idea] & my time with my uni choir I probably was once Not Completely Awful... more importantly, I loved singing & it made me happy.
Classical ballet seemed the obvious choice of activity to take up 5 months after having both knee joints hacked to bits & rearranged. It was, unsurprisingly enough, an exceptionally slow start to things. Got told by Prof Grahame when I was diagnosed with EDS (thanks to my ballet teacher asking me to request physio for my shoulder that was permanently in the wrong place & possessed of a rather novel range of motion & physio I saw taking history & not only correctly working out I have EDS but spotting my body’s attempt at going for Marfan’s - which most people miss because I’m not tall; actually broke someone doing MRCP exams a couple of years ago, they could only keep repeating “but she’s so TINY! I didn’t need to do the Marfan’s differential! She’s so tiny!”) that ballet = Best Possible Thing (for combating assorted bits of EDS) & What Will Keep Me Walking. I have rehabbed back through further knee surgeries & Other Badly Broken, got to doing pointe & did a couple of years with an amateur company... but while 3 years ago I did a summer intensive with an NJ tube in (I got quite good at hiding the end of my tube in my bun) I’ve been able to dance less & less since spending that year in & out of hospital with various bits of me announcing they were not on for working thanks. I had June to September off. After spending most of the first half of the year not dancing either. And I’ve not done a class since mid-September now. Last year & this I shouldn’t have renewed my annual membership at the studios where I dance - I’ve wasted a huge sum of money-I-don’t-have because I don’t want to admit that Stopping Dancing Forever is awfully close. (For the same reason I bought an exceptionally beautiful leotard in the Black Friday sales from a company in the US that makes my favourite leotards. I own lots of Very Pretty Dancewear, despite being utterly unbothered by fashion generally; & something like 200 pairs of pyjamas [as need gamut from vests+shorts to fleecy ones & laundry not-infrequently off agenda for weeks at a time]. The dancewear is for the me I want to be, who I get to be on my Best Days. Grand allegro really can feel like flying; & the satisfaction of Getting It Right (maybe especially in pas de deux) is UNBELIEVEABLE. Pain you choose - in a non-creepy way - is a satisfying way to push back against all the pain you don’t. Thing is, I’m an EDSer whose body thought-thinks muscle spasm & spasticity is helpful. I mean, thanks for trying, but ow, no, & remember how straightening one’s legs is A Good Thing? My ankles are so wrecked I can’t flex my left foot & the right one doesn’t point properly. Increasingly frequently not being able to use my left side properly isn’t really conducive to walking, never mind dancing. I’ve no use of the turnout muscles, so mine has to literally come from my hips. And my back musculature is totally abnormal - bit awks when your AD is meant to be watching a run-through of first entrance of swans onwards & instead gets distracted by your weirdy back & watches that, instead. Where my slipped discs are mean my arabesques might as well stay à terre, frankly. I’ve stopped going to watch performances as much as I used to, too; partly because being well enough to get to them became decidedly erratic, but also because watching other people dance when I can’t & I don’t know if-when I will again = Just A Bit Much. (Which is Terribly Wet, I’ve not stopped going completely & it’s not as if I’ve got some Career Tragically Stolen From Me By The Crippledom thing going. Although, hilariously, an ex Royal Ballet Dancer who taught me thought that’s what had happened. Or rather, that I’d been at vocational school & assessed out due to EDS. He eventually asked me which school I’d been at because he’d been asking everyone he thought would have been in my year at various places but nobody - for obvious reasons - knew me. I responded [as one would, surely?] by laughing so hard I actually cried, but being unable to speak dragged the whole thing on longer & he thought I was laughing at him for not knowing which school... conversation did suddenly make sense of why he’d been trying to get me to perform en pointe & a few other things: when I was saying “I’ve never done...” he was hearing “I’ve never done...since leaving school/as an adult”, which is Rather Different!)
Despite decline of my dancing the cats do not get to keep eyes totally to themselves: I volunteer with Girlguiding. Have done assorted things in the past, these days am “just” Leader of a Brownie Unit, but tbh with only one Assistant Leader (who is awesome, but works 4 12-hour days in the City to do Brownies on the 5th) & 25 Brownies, several of whom have additional needs of some form... it’s plenty to keep me busy, particularly with this year being the changeover to the new Programme. Lots of our Unit will need significant support from us if they’re going to manage to achieve their Gold Award, which is the focus of the new programme. We’ve managed to have our 4 oldest Brownies complete the Award on the transitional scheme - one of them only joined Brownies last year (then aged 9 and a half): she moved to us from Cubs, where she wasn’t very happy. I don’t think she’s missed a single Brownie meeting. I’m obviously biased, but my Brownies are amazing wee people - in the summer one of the things they came up with as an activity idea was litter-picking (we did some river clean-up, which they decided was the best sort of litter-picking EVER & they want to do it again) & this term I had to very gently break it to the Gnome Six that I was very proud of them for wanting to do so, but I wasn’t going to be able to arrange for us to help feed the homeless at Christmas. We sponsor a cat through our local animal shelter (though said feline lives at the charity’s sanctuary out in Sussex) & part of the reason the Brownies chose him from all the cats is because he is disabled: they thought other people might not choose him because of that & they wanted to make sure that he knew people would still love him even though he has a disability “he is just as good as all the other cats, he just might need some help doing things & that doesn’t matter”. (We did also have to reassure them that he has lots of cat friends and there are no cat-bullies where he lives.) It’s our turn to run December church parade’s coffee morning this year (we swap with the Guides) & as part of our parliament week meeting the Brownies voted to buy Christmas presents for the cats rather than keep the money to spend on things for the Unit. They are all so good at looking out for each other & after each other & it does bring me such joy seeing them learn new skills & grow in confidence. Having a Brownie go from barely answering the register to volunteering to narrate a Unit performance - having never spoken a word in a school assembly/performance - feels good. Working with a Brownie with separation anxiety so she reaches the point that she can come on day trips never mind be in meetings without her mummy... getting to see her achieve that was awesome. I’ve been at the Unit since I was a Young Leader, so I now get “Snowy Owl!”-ed by grown women who were my Brownies (as well as Brownie mummies) in addition to current Brownies. And even Guides/Rangers. (Apparently it feels weird/wrong using my real name. I get that.)
And that is a vastly-too-long-ramble, but writing it took all of what was left of my energy (delivery from Sainsbury’s AND a parcel from vegan supermarket’s Black Friday sale AND doing laundry; on low-for-me SATs + inadequate sleep + some random allergy situation = feeble weed of a Degas statue over here).
Before I splat for a bit though (sadly sleep not looking v likely though thanks to the ridiculous-adrenalin-overproduction!EDS-Thing [we really do have Too Much Fun, yes, yes we do]), Diangled, I wanted to say that I’m so sorry about your DH. The mother of 2 of my Brownies died of lung cancer (never smoked, no family history, total bolt from blue) at the start of last year, having been diagnosed the summer before. Sadly there was GP negligence at play there too, and the family were able to get this acknowledged without legal wrangling. It was the girls’ grandparents I had the conversation with last year & in any case I don’t feel v comfortable saying much on here as Not Mine To Share (as it were), but hoping to further reassure you it is possible to make that challenge for basically that exact awful reason & it not to drag out horribly & cause more trauma. There are No Words for how crap what’s happening is, nor for how much I wish it wasn’t happening to you. Genuinely, because nobody should have to go through this. Hopefully you have heaps of support IRL, but just in case nobody has signposted it for your DCs yet, the childhood bereavement charity Winston’s Wish is meant to be excellent. I’m so sorry, I hope that doesn’t come across as insensitive/crass/hurrying your DH away in some way. Just that between my own experiences of bereavement in childhood (though in my case my mother’s death was sudden & unexpected) & now helping support my Brownies, am vvv aware of the importance of insuring children receive as much help & support as possible to cope with the trauma. Just being given a badlywritten picture book about a girl whose aunt dies from cancer to read, for example, is excellent example of wildly inadequate support.
Oh feck feck feck nosebleed feck feck. Right. Who knows where I put my tranexamic acid after discovering blond!cat had pulled the box apart to steal the leaflet to play fetch?