Diane Kaylor lives with pulmonary arterial hypertension, along with multiple autoimmune diseases, and finds writing helps her to cope with the challenges of her health conditions.
In the second of a series of musings for Emphasis, she reflects on life with the challenges of fatigue – and how sometimes, just sometimes, there are unexpected benefits to be found.

What I want to know is, who superglued my bum to this armchair? That’s how it’s felt for more months than I care to remember. It’s not that I don’t want to move. I may be really thirsty, and I can hear the fresh orange juice in the fridge calling to me, but someone’s pulled my plug out and it’s just not happening.

It’s such a weird feeling. I say to myself ‘right, I’ll count to ten and then move’, and ten comes and goes as does another ten. And I just sit and stare into space wondering what it will actually take for me to stand up and just put one foot in front of the other.

Everything takes so long these days and it’s definitely not got anything to do with pacing – it’s more like grinding to a halt.

I’ve inherited one of those riser/recliner chairs from my dear old dad and it also tips you forward, but even that doesn’t do the job in terms of getting me to my feet. I just perch on the edge of the chair for a bit of a change of scenery and then return to recline mode. I wonder, can you get an ejector seat – or maybe I just need to be fired out of a cannon?

There are of course consequences to this immobility, including pressure sores and atrophied muscle. I once had the supposedly affectionate nickname of ‘thunder thighs’ but my legs now look like Pearl & Dean drapes that are badly in need of ironing.

Then there’s muscle weakness. If my toilet seat gets any higher, my head will be touching the ceiling and I’ll have to parachute off it – but let’s face it, without it I was in serious danger of pulling the bathroom sink off the wall.

Have I mentioned that my eyelashes feel like they’re strung with miniature kettlebells forcing them closed at any given moment, and I find myself waking up some time later without any recollection of having decided to sleep? Then there’s lack of balance (my walk is now a stagger) and in recent weeks, oedema – which I really don’t recommend. It makes it harder still to walk when your thighs feel like they’re sloshing around as if they’ve had hot water bottle implants. The vicious circle just keeps on turning.

I do know that I need to keep going and that muscle tone and gentle exercise would aid my breathing, and I’m trying, honestly, I really am. The spirit is willing, but the flesh is oh so weak. It’s like my mind’s going ‘c’mon you can do this’ and my body’s like ‘forget it!’ Ironically enough, this article very nearly didn’t get done because I’ve just been feeling too exhausted to write about fatigue!

I was wondering the other day why I enjoy being in bed so much, which incidentally is now downstairs. Although my husband Karl makes a really good human stair lift, I was getting to dread the effort required to make it up the stairs – or as I call them, K2.

I still go to bed around 8pm and rarely surface before 9am, and then only reluctantly. It’s not that I sleep for all that time, and in fact I went through a dispiriting period of insomnia – which as you can imagine, didn’t help at all with the fatigue.

But I’ve realised that I absolutely love bed because it’s a place not only where I feel safe, but I also feel like a normal human being. When I wake up in the morning and I’m warm and comfortable and my breathing is easy, I can pretend I’m just like everyone else. It’s only when I force myself out of this delightful zone and start having to undertake mammoth tasks, like walking to the bathroom and getting dressed, that I’m reminded what bloody hard work living is.

I had a go at Karl the other day (nothing new there). It went along the lines of: ‘I really don’t begrudge you getting out and about and doing things with your mates, but how about we do something together? Why don’t you ever suggest we have a day out, or lunch out, or blah, blah, blah?’

Very soon after this conversation, and even discounting pandemic considerations, I realised that if Karl were to suggest whisking me out for a day at the seaside or a pub lunch, I’d more likely than not say ‘nah, it’s too much like hard work. I’ll give it a miss.’ Because sometimes it is more trouble than it’s worth. I’m more likely to get sucked into JOMO* as opposed to FOMO*.

And you know, for me there is some joy to be had in missing out. Those interminable weddings (usually a second cousin who you see every five years and barely recognise) can be turned down with a perfect and mostly truthful excuse. I’m not well enough to put myself through that particular purgatory / your special day. So, I find my perks where I can.

Anyway, I’m going to end really abruptly at this point, as surprise surprise, I’ve run out of steam.

*Joy of Missing Out versus Fear of Missing Out

PS. Karl would like it duly noted that he too is exhausted. I do know that I’m high maintenance and inadvertently run him ragged. Sorry Karl!