Last Friday Growler took me into Birmingham (UK) and we attended a network meeting of people who use social media like Twitter and blogs.
It was good to be out doing something positive and have the opportunity to network. The room was full of people with about 50+ attendees and when I remarked how busy it was to the organiser she said it was about half the normal turn out. Well, it was quite busy enough for me!
Being mainly housebound and not having even been in a work environment for 2 years a room full of people chatting and networking was a bit of a culture shock. I (literally) sat on the sidelines really, absorbing the atmosphere and then chatting to a few people I’d met for the first time through Growler.
Most people were standing while I needed to sit. The venue wasn’t wheelchair accessible but there were plenty of seats as almost everyone was on their own feet. I was glad to be on the sidelines really as I was able to keep myself calm and get used to just the sheer noise of chatter.
I did end up talking health and migraines to someone but it was still useful ;o)
We had lunch at the Handmade Burger Company and it was absolutely delicious! They do chicken, vegetarian and fish burgers as well as beef so I was well catered for. I definately want to go back. I wish would deliver to my house! But a treat once in a while is just as good.
The restaraunt was wheelchair accessible and the staff were really good, holding the doors open and re-arranging furniture to accomodate me (as I sprang out of the chair and told them I’d sit in a proper seat thanks!).
Growler took me around the German Market in my wheelchair and I took a roll of film on my Holga camera which I really enjoyed doing.
It was good to be out and doing something different even if I mainly got to see backs and bottoms as Growler negotiated the crowds. He didn’t see many of the stalls as he was too busy steering!
I used my Blue Badge (disabled parking permit) for the first time and I was glad we had it!
It made the trip out so much easier than it has been previously. We could park quite close to were we going for a change!
I was pretty tired by the end of the day but I realise that I handled a lot more than I used to. 18 months ago just half an hour in that room full of chatter would have made me crumple from the stimulation. Yet I spent over an hour there and talked to new people, then had lunch out, then a trip around the market and Christmas lights. Quite an achievement.
The following Monday I was really wiped out but I was ok again by Wednesday.
When people say I seem much better I say “not really” and dampen their expectations. Because whilst I appear a lot brighter, am able to engage in conversation and remember things for myself, these things are transient. With just a little over exertion they are gone again for a day or three. And I am only able to have those moments of clarity and brightness because I manage my condition carefully and get a lot of support.
I will admit I am seeing now for myself that I am “better” than this time last year. I seem to be getting stronger. But every time I feel I am turning a corner a day or two later I hit a weary, wiped out day. Maybe this is because I over do it a little on the good day – but if I do I can assure you it’s only with tiny things. I do not do big boom and bust – any boom is done in small actions alone.
So yes I am a bit better. But not in the way that most people think they can see. Well, that’s unfair of me – maybe they are seeing the small improvement and not making assumptions. But I know when my hairdresser was busy saying “you really do look so much better” I couldn’t answer because after half an hour in the chair I felt like someone had squeezed the life out of me. And that when I got home and into that evening and the next day I was slurring words and getting confused. So yes, progress. But no, not really better.