In this special guest blog for PH Awareness Week 2021, Diane Kaylor takes an honest look at life with PH and what it means for her relationship.

Whether you are husband and wife, mother and son, sisters, friends – the dynamic of the patient/carer relationship brings about some fairly seismic shifts which I’m hoping to document here.

Why? Well to get it off my chest for a start.  And controversially, I can get a bit fed up with hearing all about these perfect caregivers (usually sainted husbands) who anticipate every need and the effusive gratitude they elicit from their appreciative recipients. I tell you it isn’t like that in our household. And maybe it’s not in yours. Gratitude’s all well and good (and I assure you I experience it every day) but isn’t there also a place for seething resentment on both sides?

“Old fools are babes again.” – Shakespeare (King Lear)

The thing is, I’m not old. Isn’t 60 meant to be the new 50 now or even 40? And friends of my age and older are cycling and wild swimming whereas I’m sitting on a sweaty rubber cushion trying to stave off pressure sores.

Believe me, I don’t begrudge them re-enacting their own private version of a multi-vitamin advert and apologies if I sound self-pitying but sometimes, I do feel sorry for myself and I don’t see that as a heinous crime.

When Karl* and I met nearly 20 years ago, I might have been more of a sex tabby than a sex kitten, but I certainly had some libido and a life which involved going out of the house, socialising and even staying up beyond 8pm. How the mighty have fallen!

Ten years into our relationship, my health began to deteriorate rapidly and now, a further ten years on and Karl is my long-suffering carer, and I can often feel like I’ve short-changed him. Lured him in as an attractive, lively 40 year old (me not him) who over a decade literally decayed.

I’ve said already that we didn’t sign up for this, but the thing is, I haven’t got a choice. It’s happening to me and of course I can try to live the best life I can within the constraints of my disease but Karl has got a choice and he (so far) chooses to support and look after me rather than clear off. And guess what, I get my knickers in a twist because he doesn’t do it perfectly!

I know there’s no point in spinning off down that particular rabbit hole of “But does he stay out of loyalty, duty, pity, love?” There’s no mileage in it and it’s probably a mixture of all of the above and more.

We’re probably the worst possible combination of patient (there’s a misnomer) and caregiver.

I hate being dependent and having to ask Karl to do things for me and because of this, I tend to bark out orders and ask him to do five or six things at the same time so in theory I only have to ask the once.

This strategy backfires every time as for some unknown reason, he resents my abrupt demands and gets flustered trying to remember the five or six tasks I’ve given him which then means I feel the need to check up on him and ask him again to do the three things he’s forgotten. This drives us both to distraction, but I can’t seem to stop doing it.

Not only that, but he has the temerity to do things in his own way rather than use my methods which of course are infinitely superior (who on earth pegs out wet trousers by the waistband rather than the ankles?) These matters of course are of paramount importance.

I have an admittedly unhelpful view of Karl – that he is unable to see what needs doing – can you believe he’s not a mind reader? I also tend to mention things to him as they occur to me so that hopefully one of us will remember (for example I’ll say, “I wonder if we’ve got any tomatoes?”) which will cause him to spring up from the sofa as if I’ve just cattle-prodded him and then sigh and say in his best long-suffering voice “I’d just sat down….”

So yes, we drive each other mad in myriad ways and having said that, when Karl manages to escape for a couple of days (call it “time off for good behaviour”) and I’m fending for myself, the gratitude factor ramps up quite considerably.

Come back Karl, all is forgiven. I’d like to think he misses me too and no doubt he does – just not the fetch me/carry me/waiting on me hand and foot aspect of our relationship.

*Karl’s name has been changed to protect the innocent.