Missing Out (by )

Saturday night there was a reunion etc... that I really really wanted to go to. It was full of lots of the people I'd worked with at the campsite (the one where we got married). But... when I went to check up on the details it became apparent that it was going to be a giant disco type thing and I hadn't paid on time. I wasn't too worried about the payment deadline, I know they would have let me in anyway and I could have given them cash then and there because they aren't nasty people - I just might not have had a meal as they were catering etc...

However, I was still exhausted from my nuerology appointment and just with the general business of everything - I'd also been out recording poetry and doing business networking events etc... and as much as I was desperate to see everybody I just couldn't.

I couldn't because flashing, blinking, swirling lights cause my speech to slur and my coordination to go and I don't want to fall again, I don't want to hit my head again, I don't want to be slow at functioning for at least four days afterwards - potentially two weeks and though it shouldn't be - the main fear of wetting myself publically if this happens because that seems to be a thing as well.

Now I have been to events and lurked outside a lot etc.. and these days disco lights tend to either fall into gentle changing fuzzy lights which I am fine with or all singing all dancing lazer lights swishing and flashing and looking glorious - these I can not cope with.

I probably should have asked what the set up actually was but I don't like saying "I'm awkward please alter your event and make it less pretty so I can come" it feels destructive but also there is another side to it - I fear asking because then I find out if I am worth such a change to the person/people/organisation and though most venues and events managers have been fabulous - this was a social event and I found the thought of asking parralising. I could not have coped with the rejection if it had come so I did not ask.

Fatigue is a big risk factor for the seizure things so where as I probably would have risked going and spending all my time outside - I knew I was too tired plus I would have been even more tired once I got there due to travel times etc...

Another issue was cost - if I could have taken Al without it costing a whole extra ticket then I also would have gone. It is pretty much the sort of event he finds hard but he would have taken me incase of seizure, he would have been my safety net but it was too much money for that (because I'm a skin flint because I'm an artist and without Al I would be a starving artist so I just actually did not have enough money for a second ticket!).

So I am sitting here jealous and bitter, feeling increadibly sad and isolated, looking at everyones photos of them having a fab time and feeling angry at myself and the world and causality and rocks and well everything.


  • By Rebecca, Mon 3rd Apr 2017 @ 10:55 pm

    Normally at these sorts of things i tell the organisers I'm disabled / have a health condition and require a carer to come with me. Normally no one charges for the carer.... I have had one conference charge a catering fee only for my carer. It's always worth asking. The point is that like me you prob can't attend on your own, so should always ask about a carers ticket/free ticket.

  • By sarah, Wed 5th Apr 2017 @ 8:39 am

    I've had events refuse - events that wanted me to perform who have insisted that carers have to pay etc... obv. this was a social event being organised by people I used to work with so part of it was that if they had said no it would have been being rejected by people I concider friends which I didn't feel I could face.

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