In A Room Full Of People

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)

20081128 lunch at handmade burger birmingham

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!).

20081128 holga has a trip out to birmingham

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!

20081128 blue badge

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.

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6 Responses to “In A Room Full Of People”


  1. 1 ashysheela December 5, 2008 at 12:27 pm

    wow yes, what a culture shock! Well done for dealing with all that noise and crowds of strangers – so alien to us now…

    i find that my illness feels like such a barrier to talking with new people – not just physically as in getting out and using energy up, but also as it affects everything it is impossible to skirt around and becomes this “issue” to explain and get over before moving on to anything else, if we even get that far…

    I am glad you are seeing improvements in your stamina, and can completely understand how tenuous and unreal that gain feels at times… it is so hard to measure/judge such things. It is good that you managed a busy day and that the blue badge made it that little bit easier 🙂

  2. 2 Nina Bunin December 5, 2008 at 2:07 pm

    OMG, crowded places and hairdressers are difficult. When I have to get my hair cut, I try to go as early as I can so the chemicals haven’t hit the place full force yet. And crowded places? Not yet……….I can do somplace when it ISN’T mealtime, but McDonalds at lunch? —- fogeeaboutit:-)

  3. 3 Rachel M December 5, 2008 at 5:23 pm

    It’s nice to know that you and Growler had nice socialisation.
    I love the photo on the top. I’m such fun of close up objects.

    I’m completely with you how nerve breaking to just say “better”. We must invent a word for “ME kind of better”, so that we don’t have to explain it over and over…

  4. 4 shelli December 5, 2008 at 7:37 pm

    What a great day! I went with my husband to a chamber mixer the other night, and it really did me in. Maybe a daytime jaunt would have been better for me. Or something not in the middle of the holidays! I try not to see things as getting better or worse. I focus on today — sometimes it’s a good day, and sometimes it’s a bad day, and as for tomorrow, come what may!

  5. 5 Joanne60 December 22, 2008 at 10:08 am

    Hi

    I saw this in my google alerts and thought I would post. I have been ill 5 1/2 years and amongst several other things was diagnosed with ME/CFS however after my symptoms improved after taking antibiotics this led my GP to consider a bacterial infection and as there had been confirmed cases of lyme Disease at my surgery she suspected this. It was later confirmed by someone who specialises in this illness.
    After many months of antibiotics I am much improved but still not quite well.

    There is much information on Lyme Disease and evidence that supports a growing number of cases not recognised by HPA. In NICE guidelines for ME/CFS Lyme must be ruled out, but how many people are ever tested for it. Also there is ample research that shows the blood tests aren’t reliable even the makers of the test kits say a negative test does not rule out lyme.

    There is growing research that suggests a large number of people with ME/CFS have Lyme infact there is a ME/CFS specialist in Bolton who has found a high percentage of his ME/CFS patients have Lyme.

    If anyone wishes to find out more see http://www.lymediseaseaction.org.uk
    or join chat line Eurolyme and watch http://www.underourskin.com the most amazing documentary released in USA this year, there are other extracts in Press links.

    Well good luck with your ME and have a lovely Christmas Joanne

  6. 6 alvason December 31, 2008 at 10:32 pm

    Well done! I find social noise is THE WORST !! It’s like a physical onslaught and I find it very difficult to get used to. I like to just sit down and chat to people individually, active socialising iis often too hard.


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