Sunday, February 14, 2016


mark smith:  
 (This image is apparently by Mark Smith, but any link I follow to find a source seems to have disappeared.  I think this might be him here.)

I'm home alone this afternoon.  Graham has taken Dulcie to visit his parents to give me a chance to rest because I've been feeling shitty in the extreme all week.  To say I'm fed up of it would be an understatement.  Basically, I went swimming on Monday evening (first time in a few months) and had a great time, swam 54 lengths with relative ease, felt on top of the world and enthusiastic about getting back on top of my fitness attempts etc...  Then the next day (and ever since then) I was utterly broken.  The same thing happened a few weeks ago when I pushed myself ever so slightly on my exercise bike.  To be honest, I've done a lot of resting this week and it hasn't made a blind bit of difference.  And that's what is pissing me off - I've given up alcohol, I've lost weight, I've been exercising, I've been resting, I've been taking my tablets and keeping my pacemaker in check, I've been getting ever so slightly more sleep, I've been sticking to my promise of not having any more children even though it crushes me...and I still have zero control over how incredibly shit I feel and I feel incredibly shit a lot of the time.  Plus feeling bad physically instantly undoes all the hard work I've put into feeling better mentally

Having a chronic illness is a bit like being on the Travelator at the end of Gladiators - you slog and you slog and you slog and then one little slip-up sends you right back to the bottom and you either stay there or start the slog again.  The difference between the Travelator and chronic illness is that I'm pretty much guaranteed never to get to the top - my life is probably going to be all uphill running and frequent falling down.  Well, until I end up stuck at the bottom permanently.  When I have weeks like this, I think I scare myself thinking about reaching the point when it won't be worth trying any more.  

You know I love the British Heart Foundation, right?  But one of the worst moments of my life happened soon after my diagnosis when I finally plucked up the courage to read my Everyday Guide To Living With Heart Failure, a gigantic volume provided free of charge by BHF.  After reading lots of doom-and-gloom statistics, I turned to the chapter called "The Future" in the hope it would cheer me up by outlining how all was not lost and research was adding options, extending life expectancy and improving quality of life.  And do you know what was in this chapter?  How to make a will and how to get a do-not-resuscitate order.  And that was it, my so-called future, nothing else.  Of course, since then I've learned a lot about positive thinking and I can see that experience for what it was - an ill-thought-out chapter title that slipped through the editorial net.  In actual fact, amazing research is being done and I'm already benefitting from that, with the medication I take and the machine that makes my heart work better and the incredible care (physical and emotional) I get from the NHS and the BHF.  But when I feel ill and find it hard to stay positive, that picture of the future as grim death always comes back to me.  Ugh.

But you know what?  Things are getting better all the time, it's just not a straight line to better.  There are dips along the way, for sure, but those dips are getting easier and easier to pull myself back out of.  And sometimes feeling pissed off at your lot is the best motivation of all.  So what's my plan?  Well, I'm going to keep trying and hope that gradually, over time, the general trajectory continues to be upwards.  If swimming once makes me feel ill for a week, swimming ten times might make me feel great for a month, so I'm going back to the pool tomorrow.  And I'll keep trying to eat better and think better and sleep better and rest more and move more, and I'll keep turning up to my hospital appointments and taking my tablets and congratulating other people on their happy lives and explaining to Dulcie why she can't have the siblings she begs me for.  I'm fine with that.  Yes, it's hard, but it's getting easier all the time.  

I have a nice life with lots of nice people in it and I laugh every day and find joy and interest in all sorts of places all the time.  I won't give up but I'm allowed to find this hard.  I am allowed to find this hard.

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