Wednesday, 18 November 2009


payback is one of the most cruel aspects of this illness any time you do anything thats off routine even if you have prepared for it you are punished by an exacerbation of symptoms this does not happen the next day but 2 days later and will last as long as it pleases so every bit of fun that you have is payed for twice over!

as you will know from my blog i went out on sat and had a great time, but what you dont know it how much prep went in to going and what the payment for having fun has been.

to prepare for my fab night out the week before i restricted my activities and stayed in no outings on my scooter! no trying to do more than i should i paced my activities carefully and included more rest periods in my week (rest in pacing means doing nothing not tv no reading no noise just laying down doing nothing) and doing that allowed me to stay up passed my bed time (7pm ish) to spend time with friends having lots of fun.

how ever even though i had been good and saved up my energy for the outing i still used more than i had so here comes the payback, it did not start till Sunday evening and by then i was finding it hard to follow a conversation. the pain that i have had doubled and the fatigue was such that i could not sleep! this may sound strange that i was so tired i could not sleep but this is common with m.e and until you realize that it takes energy to sleep and i have none left at all its a hard thing to get your head round. monday i spent the day in a daze and by lunch time was in bed again unable to cope. by tea time i took a sleeping pill in the hope that i would at least get some sleep even if its chemically induced but it took another 6 hours for that to happen during which point i got so confused i could not remember where my hubby was or hole a conversation with my mum when she rang. i woke on tuesday morning feeling like i had a god almighty hangover and spent the morning sat in my chair staring out in to space thank goodness for the internet as by lunch i was feeling sorry for my self and i needed company which is not easy when you are stuck indoors and everyone is at work. so foggies to the rescue! the tesco man came they are so good and he unloaded it all for me into the kitchen separating the frozen and fridge from the rest. it took me 2 hours to put the shopping away which i had no quite finished when hubby got up and found me asleep on the sofa!

so here i am wednesday and other than the pain i have my brain back and am back at status quo

i tried to describe the fatigue to my gp once and its sort of like trying to walk through a swimming pool full of treacle with lead weights attached to your limbs and a rope tied to your waist that is pulling you backwards, ans trying to think is like driving on one of those very foggy mornings where you cant see the road and there are no lights in front of you to follow as you crawl along unsure or where you are or how much further you have to go!

the pain when i tried to explain that is difficult as i have tow types the all encompassing ache that you get after you have done some sort of different exercise is there all the time it is deep in the bone constant it doe not come is waves but floods my my body like the cold does on a winter day. but for me it is accompanied by something that is harder to deal with i have sharp searing pains in my neck shoulders ribs lower back and hips that feel like i have been stung hundreds of times in the same spot when i stand hot searing pain shoots up my legs like fireworks spraying out into the night sky. leaving me gasping the pain causes my muscles to spasm restricting movement and causing more pain.

these are my companions on the days of payback and these are the things that pacing is supposed to help with, if you get it right there should be no change in your symptoms they should remain constant and yes they do the only problem is how do you cope with getting up at 8am sitting in your chair knowing that you can go on the computer for a couple of hours, maybe dust the lounge and help prepare the veg and thats it till you got to bed at 7pm every day, if you have a bath then you wont be able to help with dinner, every thing becomes a trade off. this does not allow for fun or the trips to the dr or just going out to be part of the world, no it allows you live on the edge never part of it watching everyone else running around while your life grounds to a halt.

so every now and then no matter what the cost i decide to live, to go out and be part of the real world and sod the payback!!!


  1. I know exactly what you mean about payback! I am improving now and am 10 times as active as I used to be but don't go out with friends much. When I do I get the "payback" you described. I think of it as a hangover that lasts at least a week and effects everything. Had a night out last weekend and have struggled all week as a result. have a look at my blog

  2. ps just realised you are a follower of my blog! ha ha