ME/CFS Timetables v. go with the flow?
Posted , 4 users are following.
We all have to pace ourselves, but within that there is room for a more timetabled approach -
- Breakfast
- 4hrs bedrest in the morning
- Hour up for luncheon
- 4hrs bedrest in the afternoon
- Hour up for supper
- 1-2 hrs bedrest
- undemanding telly
- Bed 6-7 hrs.
At other times, the body requires flexibility. "So long as I get 8=10 hs in bed I can handle my life, but it doesn't matter when it comes
This question is not about short term illness. I want to ask longstanding sufferers what the effects of routine versus following the body's need are. M.E, is like living in the 19thC. IN those days doctors were dealing all the time with illnesses for which there was no cure. Among the Bourgois there was a general rule that to maintain health one must keep 'regular habits.' If illness struck they could go to various sanatoriums, spas etc for months and take the air/waters, and a regular routine and diet. Such things were prescribed because they were found to work. Be under no illusions - these docs weren't just quacks, they built upon years of experience of what worked with illnesses they had no scientific understanding of.
We are in much the same position. We share our findings with various supplements. Please share your discoveries. Which side of this question do you fall?
Philip
0 likes, 7 replies
lori93950 philsey
Posted
i think its really important to have a routine whatever it may be or how trivial it is .
i wake
lie in bed for 4 hours watching tv
clean up the house ( the minimum)
do a few errands close by
come home rest for 30 mins
do a short walk at 4.30pm
eat dinner tv
bed .
the only institute i know of is the hippocrates in florida ...there should be an EBV retreat ! there would be many patients ! and lots if money to be made .
philsey lori93950
Posted
Thank you Lori,
So are you saying that whatever manifestations your illness brings you you plough on - not regardless, because clearly we have to find the right balance to pace ourselves - but once found you don't give in to the kinds of daily fluctuations that arise?
May I ask how you handle recovery from days like Christmas Day, a family funeral, etc., and bouts of insomnia?
Finally, as your illness seems to be more moderate than mine (you don't mention cooking dinner, just the eating - and you manage a short walk) may I inquire whether your advice is from previous experience, or extrapolation?
Philip
lori93950 philsey
Posted
hi philip
i live alone so i have to continue on .... however bad im feeling and boy have i been sick i manage to get out do my errands and do my walk .
most days im dizzy tired and really dont know how i get through each day .
yes i cook for myself and do my own shopping . luckily i have everything i need in close proximity . it has been very difficult physically mentally and emotionally .
i didnt make thsnkagiving i was too ill but managed to make it to an xmas lunch ...home by 5pm though.
i havent had many nights out in 11 months but if i want to try to make it to something and am having a 'good day' ill rest all day in preparation.
i just relapsed after a good day where i did too much and also went out that night . ive been paying for it the past 2 weeks .
philsey lori93950
Posted
hi lori
Thanks for your reply. How long have you been ill - eleven months? Are you in the U.S.? What provision is there without a National Health Service? I am worried by your description. If you forgive me, I think you doing too much. You should aim to reach a balance of rest and exertion where you don't have any symptoms, or minimal symptoms of payback.
There is a vocabulary difference I think. In the UK 'relapse' is when your entire condition is downgraded say from "moderate" to "severe?" I would call what you had "payback!" Although in practice its still awful. If you go on as you describe you might get a relapse of this major sort.
Anyway...checking emails...better get to bed, according to my routine lol...
Philip
lori93950 philsey
Posted
thanks philip i was doing better december and january then yes ' relapsed 'so got worse again .
im in the US and yes been to many different drs but there is no cure.
i was managing to do my errands and a walk nothing major and was coping not great but not terrible . then i managed 2 nights out on those good days ... nothing crazy and home early but it messed me up . now i can barely get off the bed . praying this doesnt last too long .
pet48859 philsey
Posted
I think it depends on the severity of the condition to how flexible you can be with routine. For me personally I’ve always had to stick to a routine otherwise i pay the consequences (even at the beginning of the illness) If something gets thrown in the mix ie Xmas & family gatherings I still work round my rest periods when I would usually rest. If I’m up to going out I either make it for a short time or I take myself off wherever I am & find somewhere quiet to rest. Hope that helps with your question.
caroline_74621 philsey
Posted
Hi,
i have a daily plan where i've added in chores that i need to do, hobbies i enjoy doing (including concentrating on a tv program), i've also added in certain meals to have on certain days. There's always about 30 minute rest after each activity. If ive got an event going on that i know about i will rest up the day before but if its out if the blue like travelling over to my parents (about 2 hours there) then i'll rest up afterwards and let them know when i need to start gouig or getting tired (although this can be difficult at times)
On bad days, all plans go out the window and its the sofa, the cat and marvel films (which i know of by heart so dont need a lot of concentrating!)
I've been doing this for the past 2 months so i can stay in a routine and not just let the days go by in a haze. Now i feel comfortable with this i can take a look at small changes to my diet and begin adding and taking things away.
When it comes to cooking i will precook and then freeze meals such as roast potatoes or chop up veg so they are ready to use.
Hope this helps