taniaaust1, thanks for sharing your story. You really illustrated the point that when a person is very ill it is very, very difficult to get well, but not impossible. This also illustrates the point that when you have a virus, you have to rest more than you think you need to, because viruses can start this vicious cycle. Epstein Barr Virus is what started it in my sons, even though they have different symptoms.
Is there any way that you can break up your activity time with rest, or do you not really have any activity time?
When one is sick to the point I are (I can only do 1-1.5 hrs of physical activity (on feet activity a day)
on my better days, my worst days I can do nothing at all, I cant even walk to a toilet). Its impossible to break up many of my life activities in this manner you suggest. Im going into aerobic threshold just with 1 min of standing (and it can cause the dysautonomia I get due to the ME to hit dangerous levels with my BP).
eg I have gov paid home support 5 hrs per week. During the time my support workers are here (They come twice a week for two hours at the most as I get far too sick with just having a person around me longer then that). The government disability services also expect me to be helping as much as I can!! They do not understand at all me having to rest before Im actually sick to the point Im actually looking ill or collapsed (as it is the states gov disability service refuses to believe ME/CFS is a disability illness or a disability so I only get gov support for having "Aspergers" instead).
This often leaves me over excerting myself and gives me no chance to pace how I shoud be pacing due to this I have no chance at all at getting better and consistantly slowly are just getting worst..
My current routine goes eg
Tuesday ..they come and take me shopping in a wheelchair (I collapse in the shops overwise and cant get back up again so need the wheelchair). I do nothing else that day except get dressed. I dont do dinner that night. This shopping trip can be the only time I get out of my house in a week (so a social thing for me too.. I get to "see" people doing their shopping etc. I get to say "thanks" to a checkout person).
Wednesday..I spend all day resting getting over Tuesday.
Thursday or Monday are days I have either a friend coming to help for a couple of hours or an medical appointment to go to. Im doing one medical appointment per week, that's all I can manage (and that runs me down and often over exerts me) and have currently over 3mths of specialists Im under to see (for all the issues the ME/CFS has caused).
My friend doesnt always come and is often away for up to 6 weeks as he's also a support person for his mother. I couldnt have him come and see me for a short time this week as I had two appointments (one the person came to see me in my home).
Friday my support worker comes again (I dont last out the full 2hrs they are here and often in bed before they leave.. I do rest between doing physical things while they are here)..
Sat/Sun I have to spend all weekend resting (not doing anything physical at all). By Sunday afternoon.. Im only just getting over having a support worker here on Friday.
I have to base what Im doing on when people are coming to help and one cant take breaks in the middle of medical appointments either and as I said, Im expected to be trying to help while they are. Im way over doing it currently even with not doing my dishes, being pushed in a wheelchair with shopping, never doing vaccumming or washing floors, I dont make my bed etc etc. I dont even often cook my meals (hence often going without meals). I cant do so on the 4 days a week I have people come here to help.
I could easily loose all my home support services if they deemed me to be being "lazy" and this over pushing myself is causing me to regularly have to be ambulance to hospital, sometimes once a fortnight as Ive collapsed and cant get back up (and then have to be taken to hospital for a drip to stabilise my body and my BP and ME dysautonomia issues). Ive ended up in hospital due to over doing things sooo much this year.
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If I paced how you said in your original post, that would make me extremely sick.
I once tried the doing physical stuff for every 15mins in an hour (I tried it as I saw it was a recommendation from a ME/CFS specialist) and I couldnt continue at that rate at all, it wasnt enough rest time for me. I was sick with symptoms flaring after about 2.5hours of doing that. (I lasted only 3 lots of doing 15mins of activity each hour).
So I lasted doing ONLY 45mins in broken down time before I was sick to the point Id over done it (
and only had done half of what I would of usually been able to do in a 24hr period!! I need far more rest time to doing time then that.
I was far more capable with the way I usually pace by going how I feel at the time and knowing what not to go over.. knowing my baseline. (thats the most important thing to know..where ones baseline is.. how much can a person do in a 24hr period regularly without getting sick).
My daily baseline * was only 60-90 mins of physical activity (on a good day without making myself sick) eg showering, cooking a meal etc in one day. and then making sure one doesnt go over doing that amount of activity in a 24 hr period. (* Note Im not at all refering to when I was sicker with this but refering to a point I was at for a few years and was slowly improving with (but this time with supplements too! I had a MTHFR mutation I had to treat too this time) before I moved house and forced to over do as all my gear was in boxes etc so I was constantly having to look for necessariy items, which crashed me down again and since then Im constantly over doing just to live.
No amount of carefully planned pacing rest to activity time will work if the person is going over their daily ME/CFS limit! This is the situation Im currently in.
Ive found that one has to have consideration for "several day periods" not just a 24hr period as sometimes ARE different to others due to something in life happening which one may not have been able to change (as in my case where Im having to do things when home support workers are here to help) or other things going wrong.
I plan things now according to 3-4 day periods.. I know my "normal" limits for a day if in a non crashed state, I know my limits for 2 day periods and will plan accordingly eg that is why I rest all Wednesdays as I know if I do anything on this third day after doing things on Monday and Tuesday (thou its very limited what I do do those days).. I will crash if I do things on that Wednesday, third days running.. so I never do things 3 days straight.
Anyway.. what I found is what pacing you are suggesting did not work at all for me as its not enough rest in my case. I know (before everything went wrong with my home support).. I used to be do 60-90 mins daily (I'd still be doing that if my routine wasnt working around support workers and doctors visits which is dictating some when and when I cant rest). I used to tend to do it by just doing activities tilll I started to feel tired, then rest.. then do some more etc.. till I reached the time I know I was safe for (daily limit time). I found this works better for me then having set amounts per hour to do. (but I also watch a clock to make sure I dont do too much during one hit.. eg I used to do my activity in 20mins block..
Then
at least an hour and a half rest in between (i dont seem to rest well in 45 min period and I think that is why the doing something for 15mins didnt work at all well for me and I got sick quicker then I usualy do so ended up doing even less). My body needs more time to rest after activity then that.
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There is also the complication of ones physical activity limit may be way different to ones mental activity limit and one needs to understand both limits as both can crash one. So once has two limits to consider depending on the activity. eg Im fine talking constantly face to face with a person for one hour (that's sitting or half laying with my legs up). Going over that.. even 10 mins over it, can have me start crashing.
Yesterday I talked at my home appointment for 1hr 20min till my brain got to shut down point where I could no longer read or answer the persons questions and had to head for bed. Once again, one cant do an on and off thing with another when someone is having an appointment. **just imagine a person at an appointment going "hold on, we've talked for 15mins, now you need to be quiet for 45mins till we can talk again". Its not workable.. often we are having to deal with other people or do things which cant be broken up in this way.. eg a shopping trip.. you cant go and lay down after 15mins!
At the end of my appointment, I then couldnt even read to check to see if she'd filled my answers correctly on the form she was filling out for me. Which sucked! (any way yet another case of me having to over do as others cant keep coming back!). She's going to post me a photocopy of it so I can read it.
Things like this drop ones physical limits the rest of that day eg as I said I was in bed yesterday for nearly all the rest of the day and night due to this (didnt come to PR due to it as my brain needed "rest" and I was physically wiped from that). One has to consider mental excertions as far as the next day or two goes too if one wants to make sure one isnt going over limits.
(I often alternative been physical exertion and mental exertion.. can be giving one a rest while allowing the other to recharge a bit again... and then also doing bed rest when needed if possible). Swapping activities in this way allows me to stay busier during a day so I dont have to spend so much time in bed.
One can rest some from physical stuff by sitting or laying activities as long as one isnt over doing those. There needs to be a good balance. There should thou also be complete "time out" periods of just total rest.
Anyway, the sicker someone is.. the longer the rest times between the activities needs to be and the person still may need this lengthy time rest whether they've done 10 mins of activity or 20... (I say this based on my own experiences).
The most important thing Ive found is knowing ones daily limits or limits with certain groupings of activities and staying below them... a clock can be used to time eg when I go to my counsellor appointment, we now make sure we dont talk more then 1hr! Im okay after if I keep within that limit. Going 20mins over, caused me symptoms I hadnt had in ages. (my decline happens very suddenly too and can happen without much warning..so knowing the limits for certain activities in my case is quite important).