Lordy, it's taken me forever to get around to this post. It's been on the cards for ages. Started and stopped, started and stopped. Partly due to slackness. Partly due to a rather prolonged and continuing period of bleechness. Partly due to a lap top that was on life support. But I'm going to pull my finger out. Mr Grumpy has done a MaGyver and created a laptop with a piece of duct tape, a used tissue and a hairy piece of gum he scrapped off the bottom of a table at the local Maccas. He may not be fancy. He may not have speakers. And he may insist that it is still 2010 despite repeated reboots, but technically he is a laptop once more. So I will now put on my Uri Geller hat, and will my fingers and brain to coordinate enough to tap out a couple of sentences on the old dog hair encrusted keyboard.
Time to get away from the "woe is me, life is crap" mantra I've been spouting of late. Time to find my happy place and live in the warm arms of denial for a few minutes.
A few weeks back (well actually a bit longer) I finally met a bunch of fellow Bobettes here in Melbourne for lunch. For a while now we've been in contact on an Australian FB group, with Bobettes coming from all around the country and New Zealand. The Dysautonomia community is very small here in The Land Down Under. Hell you are hard pressed to find a specialist, let alone others in the same leaky boat. But what started out as a handful of people has now stretched to 43 members! Diagnoses are varied, from Postural Orthostatic Tachicardia Syndrome (POTS) and Neurocardiogenic Syncope (NCS) to WTF?, but we have a wee little community who all share a group of pesky symptoms and a body that is not playing the game.
It was a brilliant day. The first time in a long time that I actually looked forward to meeting a group of strangers. Not that they are really strangers. Over the past six months we have all shared the highs and lows of living with Bob. The daily struggles, the tears and the hysterical laughter. It has been a great place to share local information, which is sorely lacking, and to find normality in the most abnormal of circumstances.
I can't recall the last time I went somewhere, where everyone reached for the salt and piled it on their lunch, and no one batted an eyelid. Or guzzled water by the gallon. Or did the standing shuffle to get the blood flowing. Where the bazillion things you do to simply last through a meal or stand up, and normally makes you stand out like a freak, finally feel normal. For those few hours our shared abnormalities were made normal and it was wonderful.
To sit and laugh with people who know the joy of lying down on floors in public, throwing up, looking like a drunk and all the rest of the joys that go along with this syndrome, is fabulous. The shared joys of the medical system, inconsiderate doctors and fun medications. Tips for managing, stories of when we didn't. Stories of lives outside of illness. Sharing our histories and finding so many commonalities, none of which our doctors have mentioned. Hands up who had severe gastro problems when they were a teenager, or mutliple traumas/health issues leading up to the final bomb of Bob. Hands up who has joint issues. Hands up..........
For all of us it was a challenge to get there. Many of us were ill leading up to the day,on the day, and the days after. Some couldn't make it due to bodies that refused to cooperate. Some are now in hospital (checking out the male staff off course, can't keep a good gal down). But I think we would all say it was worth it.
To all who attended I am so glad I got a chance to meet you all in person. To all those who couldn't make it on the day I hope we can meet up on another day. Big love to a strong group of women.
For all Australian's and New Zealanders looking for support come some say hi.
FB Group.
Oh I forget to mention, four of us stayed till 6pm! 6PM!! That's like staying out till 3am on a bender, snogging total strangers, dancing with your undies on head, and eating a dodgy kebab from a mobile vendor at a petrol station, type of night for normal folk! (God, I miss those days)
WE ROCK!
Cheers
The normal for four hours on one Sunday in January 2011, Michelle :)
In honour of my resurrected lap top I give you
, Back in Black, AC/DC.
I am so jealous of this wonderful meeting. In my dreams I want to attend something like this. I am so happy you got to spend the day with fellow....I do not know what wonderful word to use to describe the great bunch of ladies. My heart just smiles for you all.
ReplyDeleteJane
Oh what a lovely day! Thanks for writing about it, I almost feel like I was there. (You're all so gorgeous, woot woo!) Thank you for the link to the FB group too.
ReplyDeleteYou rock harder than Angus.
ReplyDeleteAs someone who ranges from invisible to very visable in my illness (not Bob possibly mito), I was very touched by this post.
ReplyDeleteI think you all are poster gals for invisible disability. A casual observer would never guess the challenges you all encounter on a daily basis, the toll this outing likely took, and the extraordinariness of sitting upright in a loud restaurant and extending your lunch with socializing until 6pm. I get it - for some, that's Everest.
Congrats on your community - lovely.
Donna
excellent!
ReplyDeletewhat a lovely thing to do meet up. share stories, get to know other normals. so pleased for you all. must look up to see if theres one local to me, surely there must be one in london!
ReplyDeletexxx
Jane - I hope you get the chance to attend something like this too. It was really lovely.
ReplyDeleteGreenwords - come along and join. Go Aussie power.
Elly Lou - not only do I rock harder than Angus, I could so rock that school outfit to boot.
Bibliotekaren - it was an Everest, just call me Hillary. The Invisible/visible roller-coaster is a hard one and mito definitely fits in.
ReplyDeleteEmma - twas 'excellent', in fact it was a 'Bill and Ted's Excellent Adventure' type of excellent.
Em - I hope there is one in London for you, it was fantastic. Maybe you could all go to Claridges and royal watch :)
I just found this blog and added you to my 'Comrades' folder. Will be following you with shared interest, trials and (hopefully not too many) tears
ReplyDeleteI just got home from a hard day at my pocket money job, im trying to leave but having trouble finding someone to replace me and can't leave my friends in the lurch... five hours on my feet and I can barely walk my joints feel like a twelevce hour day - i used to do a shift like this and go out dancing all night after...stil can sometimes! IM tired of trying to explain to staff why im limping at the end of the day, or eating so much salt on my lunch or sometimes just walk out and find somewhere to lay on the floor half way through my shift... ive told them a number of times what it is etc - but i don't think anyone gets it. I think they think its some kind of made up syndrome...anyway - it bought me to tears seeing a group of ladies who 'get it' here in australia !! Keep up the good work ladies !
ReplyDeleteReading about your experiences with dysautomia/POTS and joint issues, and wondering if you've ever heard of Ehlers-Danlos Syndrome, which I have? Quite often people with EDS have POTS. Not sure if it is often the other way around, but I figured I'd drop that breadcrumb as a little food for thought. Best wishes from the States to fellow invisibly ill ladies and gents:)
ReplyDeleteHi Anon
DeleteThanks for the info. I was finally diagnosed with EDS III last year by a geneticist. I'd suspected for years but it wasn't until that appointment that it was confirmed. :)