Tuesday, 10 July 2018

PoTS, Pacing, and heat avoidance.

Like most of us with autonomic dysfunction of some kind, I've been finding this heat really hard to handle.

Even with employing my cool vest, spraying water on wrists and neck, putting my feet in cold water, and using fans around the house, I've been struggling. I've been getting an hour or two of work done in the morning before the heat builds up , then been restricted to horizontal for most of the rest of the day. Exhausted and barely functioning. And the effect has been cumulative - i.e. each day leaving me a bit more drained than the last. And to compound the problem, I've been unable to do much exercise because of the heat induced symptoms - and exercise is one of my main long term management strategies!

Then on Sunday a solution dawned on me. Hotels have air conditioning. Yes, they are ridiculously expensive. But on the other hand: FUNCTIONING!

Image description: hotel lobby area with chairs and tables, close up of laptop next to tea cup, and laptop users' feet up on a chair.
So I did it. Booked into an air conditioned hotel with an air conditioned gym for Sunday and Monday nights.

Bliss. (And hallelujah for the reward points my business stays have built up!)

I'm writing this blog from the air conditioned lobby at the end of my stay.

This break has taught me a few things:

1. Removing heat as a trigger doesn't stop me having PoTS.
Ok, so this sounds ridiculous written down, but I bet I'm not the only one who's done something similar:
Symptoms were so much better without the heat trigger, that I acted almost as though I had no triggers! I sat working in my air conditioned room. Symptoms were escalating and I was ignoring them. Fog and nausea got to the point of "I can't think....must think...try harder...must try...harder...." when it dawned on me that while I am now capable of sitting up without feeling horrendous, I still have PoTS - and I still need to manage it! This level of symptoms means "lie flat for minimum 15 mins and don't try to think". So that's what I did, and funnily enough it helped. And now I'm back to functioning ok again instead of still attempting to push through ever worsening symptoms.
I must remember that pacing is for all days, not just bad days! - If I'd paced and done my usual frequent wriggle breaks and snack trips I'd probably not have got nearly so bad. but hey, at least I noticed in the end.

2. Order kids portions for dinner.
In restaurants portions are often massive. Yes I can eat it all but it will make me so symptomatic that I'll be flopped for hours! So today I ordered from the kids menu. Much better. Next time I might also ask for a kids sized portion of an adult meal.

3. Doing more exercise will tire me out! Yes, it's good tired, but still may mean extra powernaps needed. Needing extra recharge breaks after exercise is totally OK, and doesn't automatically mean I'm getting worse.

4. Given how symptomatic I've been over the past few weeks, success is measured by feeling better when I leave than when I arrived. All work achieved is an extra bonus, but not something to 'push' myself for.

5. Balcony hand rails make excellent things to hold while having a wiggle break.


And finally:

6. Hotel lobbies are often air conditioned - and can be used for the cost of a drink from the bar. My mission over the next few days will be to find the closest quiet, air conditioned places that I can 'borrow' for a few hours each day.

So wish me luck as I play 'hunt the air con' in a small town with few hotels....but you never know, I might get lucky!

(and for the observant ones of you, yes, the project on my laptop screen in image 1 is the stickman pacing book in progress!)

(And if you are interested in resources to help people around you understand and accept some of the different approaches that life with autonomic dysfunction often needs, check out our autonomic dysfunction and pacing related products.)

Sunday, 8 July 2018

Autonomic Dysfunction and enjoying "the football"

I'm not a football fan, but I do enjoy watching the occasional match - espeically when England is playing.

And watching with friends makes it even more fun. Sharing the sense of expetation, the highs and lows seems to amplify them.

But this year although my local friends invited me to watch both the England / Columbia and England /Sweden games with them, I decided to watch them on my own. On a kind of gut instinct thing that I couldn't explain. Yes, I wanted to watch them with friends, and yet....

Half way through yesterday's match I realised why.

Sat in my living room half-watching it on the TV in the background while I did some cross-stitch I realised I had instinctively made some really wise condition management choices.

My PoTS (a type of autonomic dysfunction - see POTS UK for more info) is highly symptomatic due to this heat and I'm much more sensitive to all my usual triggers, including eating and sitting upright. But another trigger is stress - or excitement. Anything that gets adrenaline pumping. And while I love the hype of watching sport with friends, watching England in tense matches with some keen football fans would inevitably be adrenaline fuelled. I'd subconsciously realised that it would NOT be nice in reality. I would have spent both games a tacchycardic, dizzy, weak, nauseus mess from about 5 minutes in.

Even my cross-stitch was a condition management thing - preventing me from getting so involved in the the game that adrenaline would make me flop, but at the same time allowing me to watch it and enjoy it. So when we won I didn't yell and shout. I smiled to myself and gave a nod. We did it. Well done team.

It feels very odd writing this. It seems strange that by distancing myself I enjoyed it more. And yet, that is how it is.

So for our next match I will definitely be employing the cross stitch again!