Living with Dysautonomia and EDS – Chapter 10

My latest musings on living with dysautonomia and EDS that I shall call “The Rise and Fall of the Red Card!”

A tale of attempting silence by non verbal cues in my house… (Anyone that knows my house will know where this is going…)

Talking and laughing, the things that we all take for granted, are the things that I can no longer do a great deal of. Which is a complete shit because, hey, who doesn’t like doing those things? It’s called fun, right?

I am normally NOT a quiet person by any stretch. I bellow at the kids, laugh out loud, talk with excitement and would like to think I’m probably quite a fun person to be around. My personality is loud. At least that is how I used to be before this thing got hold. Now I have to purposely keep myself in check, not indulge in exciting conversations and hold myself back from talking at length. If I can’t keep myself in check, the adrenaline and all its nasty manifestations gets let off the leash.

This thing has turned me into the fun police!

But unfortunately it hasn’t been particularly negotiable so here’s what I’ve had to adjust to reduce the pressure on my system.

I now write a lot and I say what I think when I write. Hence this blog. This is ‘me’ on a page. My authentic self. I also read other peoples’ blogs a lot. I find it calming and motivating. But I only read short prose. Apart from not overstimulating myself, I have the attention span of a gnat. These two activities are the ultimate in quiet for me especially since I can also do them horizontally.

I now also pace my work big time and do most of it from home where I can be a little more reclined and quiet between phone calls. I need space between meetings (lots of it). This sucks a big whole lot because there is nothing more I would like than to be back in an office as part of a team. Can’t do it and, if I did, I wouldn’t be a well chicky. That’s all there is to it.

I also socialize much less. Nowadays it’s a coffee catch up with a friend during the day. And not too many of them either during the week because they are complete excitement fests. No bars, restaurants or beers for me anymore (boo). See, I wasn’t joking when I said I was the fun police.

Having a good old chit chat is a complete assault on my system – not just the output but the noise input as well. Alcohol also exacerbates this thing due to dilating the blood vessels and messing with my blood pressure – it revs up my adrenaline in more ways than one. If I’m doing all that, being a blabber mouth and buffering the noise levels, well, all those things are a dead cert for one of my hangover headaches and fatigue the next day purely from the adrenaline overload.

Whilst stopping my alcohol input and reducing my social output sucks a lot more than the work impacts I know my body is thankful for not being pushed to its limits.  As is my wallet, as is my liver! And let’s face it real hangovers just get worse as you get older anyway (don’t they?).

So adios to madame social butterfly and motormouth – she is missed more than you know 🙁

The above strategies are on the whole effective. When I stick to them. However, there is one area of my life I haven’t been able to crack on the talking front….. it’s the family – god bless them.

We are a rather shouty house.

Kind of comes with the territory when hubby is deaf in one ear. Everyone just kind of goes for it in our house – it’s a big free for all. We are a bunch of loudness. Shout begets shout.

My daughter also over alerts and jumps (that should actually say screams A LOT) at the slightest thing. Wonder where she gets that from? Ahem.

In order to control the proceedings, the fish wife does tend to sneak out a bit which does them nor me any good, at all. But it can be very hard to be heard above the din sometimes!

Whilst discussing my noise and talking intolerance predicament with a friend, she came up with an unusual idea. To use pictures instead of words to convey how I was feeling that day so I don’t have to say anything. Her intent was for me to use it in a work context. But, as soon as she said it, I immediately thought a version of this would actually be great for the kids and hubby!

I can ‘red card’ the family I thought. How marvellous.

So I explained this great idea to the kids and hubby over the dinner table one night. The idea that I whip out a red card instead of shouting at them when things are getting out of hand. (I gesticulated – a bit like giving them the finger, except it was a card. The kids didn’t quite get the enactment but hubby did).

I have to say I thought I might get a more enthusiastic response! You know to save the impact on their mum/wife of all this loudness. What I was not expecting was for them to look at me like I was some kind of nutter. Literally with an ‘are you serious’ cum ‘what are you talking about’ look on their faces.

It turns out the concept of a ‘red card’ wasn’t readily understood by my sports phobic family. And trying to explain the use of a non verbal cue to a family of loud mouths didn’t fly either. It was like I was trying to pop their fun bubble. They just didn’t get it!

Ultimately I guess all that talking, screaming, laughing and shouting is us. It’s what we do. It’s what most families do.

Trying to curb that would be completely futile and counter intuitive. Can you imagine? The mad woman with a bad twitch sticking them the red card countless times just trying to get them to take notice of it. Then I’d end up yelling at them more than I do now to zip it, while they fall about laughing at me. None of it would work.

Why should they change all that because of me? So much of what we do and how we do it has changed anyway – who am I to want to take away the essence which is us?

So I didn’t fight the objections, I backed off. The fun police got back in her box. She went back to her room to rethink her strategy.

So it’s back to the drawing board for other ideas for more tranquility for me (and them) at home.

Hmm, what will work with this family of mine in our cosy, more on-top-of-ourselves house where escape routes are few?

Padded cell anyone?