Dialyse to Live

Warning!  This will be a self-indulgent rant, full of self-pity.

Big D day again.

Today was a little bit harder, as I should have been in London with a friend for a catch up and a West End show.  It was something to look forward to when we booked months ago, but dialysis changed all that.

I read a Twitter post the other day about this guy who does home dialysis, and he was showing his machine on a holiday he was taking.  His message was that you should dialyse to live, not to live to dialyse.
Nice words and sentiment but I’d love to know how that is possible. 


Here is my evidence:

CKD has taken away my career.  I had a national UK role which I can no longer fill due to my inability to travel around the country.

CKD has taken away my hobbies.  I’m so lacking in energy that I can’t go walking, cycling or taking on challenges, because I get out of breath just climbing the stairs.  I can’t do a Kilimanjaro type challenge anymore because every other day I’d have to be hooked up to a machine.

CKD has taken away my holidays.  I like going to F1, based on my current dialysis day, Saturday, I would have to miss qualifying day.  What is the point in that?

CKD has taken away my social life.  Saturday trips to the theatre and London and meeting up with friends have gone for now.  Even my Theatre Thursday is at risk, because when I get to the full 4 hours on dialysis I will find it hard to get to Cardiff in time.  Plus, when you have CKD everyone recognises that you’re the ill one, and that means they start thinking that you wouldn’t be interested in coming out.

CKD has taken away a little bit of self-respect.  I don’t bother shaving much these days, as I hardly go out.  I’m practically hermit.

I read another book from cover to cover at today’s session.  I’ll keep going to all my D sessions.  I will get through this.  I will have ups and downs.