i know just as every one who has ever had m.e knows that pacing is the way to control your symptoms.
however the difficulty is that to pace effectively you have to find your base line and if you are like me this means that you really cant do a lot! for my symptoms to remain at a constant level with no increase, my day would consist of a shower (sat on a bath board with a hand held shower), dressing, going downstairs on the stair lift walk to kitchen to get breakfast, return to lounge and rest for an hour, 20 mins reading/comp/tv, and hour resting, make lunch, an hour resting, 20 mins tv/comp/or craft. an hour rest. help to prepare evening meal sat on perch stool not more than 20mins, eat evening meal, go to bed rest one hour tv 30 mins rest then sleep.
at this level i have no increase in symptoms and eventually a decrease in my physical issues. but to do this sends me nutty. no wonder a lot of people with m.e get depression as well living like that is not living!
so do i do this every day, no i dont, i have a couple of days a week where i do this. the rest of the time i live a little each day. i do something that makes me feel like i am part of the world.
so i go out on my scooter, or pop to mum and dads for a bit, or watch a film, some times i make cards. these are the things that help me to carry on and stop going nutty. but they also cause me to yoyo and boom and bust a bit.
the problem is i have not worked out a way of pacing and living.
my symptoms have not reduces nor changed particularly in the 2 years since i was diagnosed what has had happened is that i have got used to it and so has my family so unless im really bad we dont notice. we expect the bad days and look forward to the good days.
i think the most difficult thing that i have to deal with is other peoples opinions and i dont mean friends and family, as it is obvious most days that im not well. the people i meet with the
most prejudiced are those that are there to supposedly help and support us they look at you on a good day and say that you are fit to work not taking into account that i only one of those a fortnight! the drs that sit there and tell me i could get better but they dont know when or how long!
what i do know is that without a computer i would have been so much worse, the computer allows me to contact and chat with other people, it helps me to find the answers to my questions. the computer allows me to live a little more than i would be able to in the real world. it is not a replacement for the life that i had but it is a crutch that helps me cope with the life i now have!
having m.e is a roller coaster ride that gives you a few highs and some incredible lows it sets you up for fall after fall both physically and emotionally. the only problem is the other on the ride with you are not experiencing all of it! up down good or bad its not going away and i still dont have any answers!