At the Melbourne Recital Centre

by Claire

Last Friday I was in Melbourne to hear the Vic Welsh choir sing at the St. David’s Day concert. I have slowly been feeling better and better, and was feeling so good that night that instead of being dropped off at the front of the venue while Guy parked the car, I stayed with him and walked to the Melbourne Recital Centre from the car park at the Australian Ballet Centre (a distance of 200 metres!). As we were walking in we met some old family friends and it was so nice to see them and look ‘normal’, not stooped over and hobbling at a snail’s pace like I usually would be.

vic welsh

The first ten minutes of the concert were lovely. The choir sounded great and I was enjoying a night out. Then something started to feel… wrong. I was frowning, and my hands didn’t feel right. The MC was making me feel nervous. The concert was charmingly relaxed and informal, but I was finding the unpredictability of it nerve-wracking. My heart felt like it was beating faster* and I had a small headache. I would lean in to Guy to rest my head on his shoulder at times – it was good to rest, and I found his smell comforting; it made my heart and stomach calm down a little. I had no idea what was going on. Was it fatigue? Yes, I was tired, and my muscles were starting to feel weak and ‘floppy’, but I felt more ‘off’ then just tired. Was it anxiety? Probably; I was fairly worried about an upcoming party I was going to, but this sudden onset of anxiety was unusual.

At the interval Guy could see that something was wrong and ushered me out. I was dizzy and confused so we took the lift down. The movement of the lift affected me so much that I nearly fainted. It felt like my knees were suddenly jelly and that gravity had shifted from below me to the corner of the room. I clutched at Guy as my ears filled with cotton wool and the sensation left the sides of my face. The suddenness of this scared me and I promptly burst into tears. Needless to say, we left the concert early. I was so bitterly disappointed to have turned back into the weak, hobbling old lady who can’t walk without support.

EMhallOnce we left the venue and got into some fresh air I started to feel better. By the time we got home my stomach and heart had calmed down, I was much less dizzy and my brain had cleared up –I was just feeling a little bit shaken and quite tired. What had happened was an allergic response, which triggered my dysautonomia** resulting in fatigue, anxiety***, dizziness and brain fog. The Melbourne Recital Centre is fairly new and the Elisabeth Murdoch Hall is covered with beautiful wood panelling which most likely contains formaldehyde, one of the substances I am allergic to.

There are a few points I want to take out of this.

  1. In a way it was good to be suddenly plunged back into my former state. While I was living in the city I was exposed to so many persistent allergens that I was dealing with this physical response around the clock. Being constantly subjected to any condition ‘normalises’ what is going on. You become used to it and forget how to feel otherwise. Looking back I now see why I was so debilitated – it’s not just the fatigue that I was dealing with. Anxiety and brain fog are crippling; they make it hard to understand what’s going on, and hard to work out what to do.
  2. It takes a long time to get used to being sick. It takes a very short time to embrace ability again. And it’s very easy to forget where you have come from and how hard it was.
  3. I have been to the MRC before, and without these devastating consequences. Is this new sensitivity to certain chemicals the result of my living in the city for most of 2013? And will the sensitivity ever go back to normal?

*In actual fact my heart rate was probably very low, just one of the ways that dysautonomia affects me.

**I was diagnosed with dysautonomia about a month ago – updates coming soon.

***Anxiety may be secondary to the other symptoms – it is very worrying and upsetting to feel this way for no apparent reason.