Good Days v/s Bad Days?

[taniaaust1]

I think your analogy's fine. It's tough to find something that sums up our experience exactly.

I think what you took from what I said wasn't quite what I intended. For me, I get my $10 a day of energy (since my funds are Canadian ). If I choose to save $5, the next day I will still get only $10 on waking. Maybe $11. But there's a definite cap on how much I can save (i.e. I couldn't just lie still for a week and then go hiking or something). There's a baseline of activity that my body can handle, and whatever I do, it will try to normalize itself back to that baseline. If I really overdo it badly or consistently, my baseline shifts downward permanently. If I'm really good about resting consistently over a long period of time, my baseline will shift slightly up permanently (though unfortunately the trip down seems much faster than the trip back up). I'm finding that now that I've been better about only spending $5 or so consistently every day (and not too much in any one place), the amount that I receive each day is very slowly increasing over time. My baseline functioning now is much higher than it was a year ago. When I was trying to spend $8-$10 per day, I was on a roller coaster of functioning, and I wasn't improving much at all. Before that when I was going into debt, I was getting very quickly worse.

I don't think we can save ourselves one day and therefore do more the next. I think we can save ourselves one day and therefore not crash, or avoid triggering debilitating and unpleasant symptoms. And that avoiding crashes allows healing to happen very slowly over time. At least, this has definitely been the case for me. It just took me a really long time to realize that even when I felt like I was "still okay", I was really still overdoing it a lot.

The problem is that we don't get any savings, and if we go into debt, we can't just pay it off by scrimping the next day. It's the kind of debt where when you don't pay up, some large scary man comes to break your kneecaps.

I think this is one of the best explained posts Ive seen on how I experience it too.. It sucks that we have to go with making sure we dont over do things for very very long periods (eg maybe 6mths or more) to then have a 10 spoons baseline go up to something like 11 spoons, improvement (unless you find something else which helps a bit) happens so so slowly and may not even be noticed except when one looks back to how one was a year or two ago (that is if one isnt overdoing things).

I think many over do it without realising it and hence they dont see this pattern going on (you just cant consider just what you did the day before but the preceding DAYS have to be considered), others may have different illnesses so never see this pattern of the sickness being connected to how much you are doing, while others have other things due to this illness that they need to find and fix and get out of the way first before they have any hope of seeing this pattern..

eg if one has food intollerences going on they may miss this activity pattern as the days they eat the foods making them worst, may be a lot worst then the other days... the food patterns mixing with the other patterns eg activity level patterns.. may make it very hard to see any pattern at all, food or activity wise. Then there is the temperate too.. if one dont take that in account eg hot days may be worst, that too can prevent someone from seeing an activity level pattern to things. Once you learn what does and how everything else affects you, it is far easier to see your patterns with activity. There is always a reason why ones body is worst some days then others, it can be quite a challenge working out those things.

 

[taniaaust1]

Exactly! You can go backwards immediately, but forward progress only comes at a very slow pace.

I used to get so frustrated that we were supposed to follow "the 80% rule." On any given day, use only 80% of your available energy. What lame advice! As far as I ever figured out, the only way you know what 80% is, is to hit 100% and crash and burn. And wallow in regret!

My latest approach is to map an active/inactive schedule each day. I will work a maximum of 30 minutes, then lay down for 20, no matter how strong I feel. Or work an hour and lay down for 30, if I'm having a really good day. That seems to have overcome the inevitable failure of having to divine that ethereal spot where I've gone too far. I'm much happier with this strategy. Frustration is low and energy is improving. It's a keeper for me.

I used to put myself on like an activity "program" too cause otherwise I'd overdo each and every day

In my case the activity program I first arranged for myself was to every hour do 15mins of whatever on feet activity (not just standing as I dont do just standing ones cause they are terrible for my POTS) and then rest (laying or sitting) for 45mins. (with an equal rest time I'd very quickly burn out, hence why I do things on this scale).

But I ended up finding out that I couldnt thou keep up the 15mins activity every hour during my waking hours over the whole day and ended up realising there was a daily activity amount limit I had to set on top of that. Keeping thou very good records of my daily activity thou helped me to come to work out the exact amount of physical activity I could have in a day with these 15min periods of an hour, it turned out to be 2hrs 10mins to 2hrs 30 mins.. surprisingly only a 20min of variation (this was working to my limit without any immediate bad effect or negative effect that day but tire quicker the second day. So me realise my base line was lower on day two even with doing that, hence this amount of activity still has day later after consequences for me but it isnt noticeable except with a lowering of my baseline).

So at that point I decided I needed to do a rest day each second day on top of this to allow myself to get back to my baseline state otherwise things wouldnt be substainable to me.. day three Im completely back to my ME baseline so can follow this 2 day pattern again. I still kept the 2hrs 10-30mins doing time every second day thou (the lower number on warmer days) but at that point seeing I knew how much I could do in a day exactly, I stopped worrying about the 15min activity periods and went to splitting that time up in whatever way I felt, over the day. I found I could split it up in three lots of 45mins (but couldnt go over that amount of about 45mins without a rest due to POTS) and it would have exactly the same effect on me as if I was doing things for 15mins each hour for the same amount of activity time.

Ive thou crashed I couldnt follow my activity schedule due to a house move so my baseline is now lower so that has changed everything..but that schedule I had protected me from over doing it for a long time and I was very very slowly getting better there for a time.

 

[VeganMonkey]

ahimsa thank you yes I do that too, comparing to when things were worse. Last year was the worst ever so that's now my example of how bad things can be and how much better things are now. Even if I can't compare to anything from before where I was feeling better its good to know I overcame that really bad time last year

I'm also one of those POTS people that doesn't faint, I can get very dizzy but don't faint. But my mother does. I suspect she got some POTSy symptoms, but she doesn't want to get tested