So it struck me again this afternoon what a mass of contradictions I really am!! I was sat doing a jigsaw puzzle (another one of the things that eds has curtailed, but more about that later!!) watching first the end of Le Mans 24 hour race and following that one of the top gear specials!!! Now I’m not saying that I’m completely unique in having eclectic and diverse tastes but I do, in pretty much all areas of my life, have very differing tastes. I love motor sport, cars, football, tennis and at times (6 nations mainly) rugby. I also like gymnastics and dancing (totally love strictly). I was even training for my black belt in karate before I became disabled. But I also like many arts and craft related things like knitting, crochet, cross stitch, jewellery making, sewing, colouring, cake decorating, baking and any other crafts I can try my hand at. My music tastes are somewhat different too everything from Nickleback, Linkin Park and Queen to Take That, the Backstreet Boys and various other pop music and others in between!! I even at the right times like classical (especially Tenors like Alfie Boe and Russel Watson) and I love musicals. My diverse tastes don’t stop there and my films are as different as Disney to action and Rom com’s to some sci-fi like Star Trek and of course again musicals. So I enjoy a wide range of hobbies and watching and listening. However diverse my tastes are though my EDS and other conditions don’t discriminate.
Sitting finishing the last 20-25 pieces of my puzzle off my POTS was going mental, I was ready to fall asleep with fatigue from my symptoms being so bad all day and my carpal tunnel and tendinitis were causing problems picking up the small pieces. It is frustrating when you used to be able to work at these tasks for hours on end and yet now sitting at the table for 10 minutes left me sweating with the effort (and soaring temperatures) and my kneecaps going for a walk around my legs. Break no.1 for a drink and relocating said kneecaps and I try again. This time brain fog had set in too and so I spent the first couple of moments staring at the puzzle trying to work out exactly what I was supposed to be doing with these little pieces, once my mushy brain stopped doing a good job of being completely absent I carried on having another break after another 10 or so minutes. 30-40 minutes working interspersed with 5-10 minute breaks (each time) and my puzzle was finally finished. Rather than putting it away and starting my next one my EDS, POTS, fatigue and other symptoms were so overwhelming that the rest of the day (as had been most of the day before I started my puzzle) saw me lead out on the couch trying not to move instead of carrying on to start another jigsaw!! But this, far from being a once off because of the heat, is instead a regular occurrence. Whatever my activity, whatever I’m doing has to be carefully paced. I have to have a couple of things on the go, a craft, computer time, TV and music are carefully alternated giving me the energy to get through a day. A task that would take most people 30 minutes can in fact take me all day once breaks, easier tasks and eating and drinking have been carefully choreographed to allow me to still do the things I love. Now I’m the first to admit that my “pacing” is absolutely rubbish, I do things when I should be resting and can get quite stubborn when trying to carry on. I have an amazing “pacing kit” from Stickman Communications (I will put the web link below, but if I forget please ask!!) but because I don’t have anywhere to put it up it is sat waiting for either me to move out or things easing to allow me more space here to use.
So for now I will continue to try to pace where and when I can, and I will still (I’m sure) fail at times and do too much. However despite my EDS and all my other conditions I will continue to do as many as diverse and eclectic mix of hobbies as I can, you could say that my diverse tastes are actually useful because at least when I find one hobby sitting up too much I can instead pick up one of my other ones for a break!!! Who’d have thought that my strange mix of hobbies would in fact end up being helpful when pacing!!!
What do you think of my puzzle (a limited edition wasgij)???
As I knew I would I forgot to put the link on. Love loads of stuff from here but for the pacing pack just search for pacing on: