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Do More, Suffer Less?


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Guest CyberPixie

I have noticed since the POTS became worse that the more I push myself and do things, ok I will suffer in some way for it but I kind of feel better (if that makes sense!). As soon as I rest after doing more I crash badly and have all my symptoms at once - today is one of those days.

Am I better off to keep going and do more everyday? I've had a very hectic few weeks and thought I should take a few days to rest, now I wish I hadnt. Boy, do I feel rough.

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Paradox. Inconsistency. Ambiguity. Robbing Peter to pay Paul. Danged if you do, danged if you don't. Running on empty. Burning the candle at both ends. Double bind. POTS.

I may not have had the diagnosis long, but I've lived with it a long time. I came to the conclusion, that emotionally I will feel better when I've accomplished something, and there's a lot to be said for that. And, yes, resting for a few days can 'deconditon' you to the point of feeling worse. We have to look at it as a sort of 'nervous system colic', it ain't happy no matter what.

Then again, I knew a fellow sufferer who said, "Sometimes you just have to take a vacation from the illness," meaning do/eat what you want and know that you will pay for it.

(Note to self: Not meant to be a way of life. Kick bad habits. Maybe . . . next month.)

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This is how I look at it (provided you know the reason for your symptoms is POTS and not something else like heart disease):

I will feel bad if I do. I will feel bad (and maybe worse) if I don't.

I will feel bad no matter what. Laying around makes me really bad. So...

I push myself. That is the story of my life with POTS. I push. It makes life a lot more difficult than it used to be. That's for sure.

But, since I know laying around and doing nothing make me worse, I push on. If able-bodied people (like my husband) understood how difficult it is for me to go to social functions and sit there, they would probably be amazed at the effort it takes.

I definitely cannot do what I used to before POTS, but I exercised before, and I exercise now. I will not stop unless I have a fever.

I sometimes have down time, like you mentioned, but I do not let them take over.

That's how I do my life. I figure that the body tries to find ways around my deficit if I push - something like when someone is assigned physical therapy. It hurts, but it's necessary.

That being said, if I've developed a headache (usually I think it's lack of oxygen to the brain) and it's getting worse, I know to lay down and stop pushing.

It's a tough life. That's for sure. But the less you do, the less you will do.

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I wasn't able to exersize at all a few months ago, but the doctor wanted me to do as much as I could.

I had dizzy spells when I walked around the block, but I pushed myself a little more each day.

After awile I was able to do more, (walk faster, jog a minute or two, do all the dishes) :)

It's not easy by any means, I do have more energy though so to me it's worth it.

I now go to the Gym 4x a week and I do what I can and push myself a little farther each time I go.

Every time I walk out of the Gym, I feel like a wet noodle. But I feel better in the long run.

I get symptoms no matter what I do, so why not benifit from feeling like crud.

Amber

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I agree with Be Still that this is somewhat of a paradox. I very gradually increased my level of activity once I was properly diagnosed and on medication. I found that if I push myself, but not to the point of exhaustion, I do best. Since my diagnosis, by far my worst days have been days I decided that I would "take a day off" and pretty much lay around and rest. Those couch potato days made me feel absolutely awful. The resting seemed to increase my fatigue about 10 fold.

With a gradual increase in activity, I now live a normal life with a few exceptions. Hope that you are feeling better soon.

Carolyn

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I too, push myself. Giving in and giving up does not make me feel better. I really feel better with a reasonable amount of exercise and rest. But only you know your body, and you have to pace yourself. I do not react well when someone other than me says "push yourself".

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I agree with you ellen,

I finally told my instructer at the gym what I've been dealing with, she was trying to push me farther then I could go. At first she reacted the way most people do, asking me why I was working out.

I told her that the doctor wanted me to work out but that I have to go at my own pace.

I also told her that if she wanted to help me she could give me encouragement instead of trying to get me to be at the same level as the class.

She is so supportive now and that makes the exersize prossess so much easier.

Amber

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Hi,

I notice that if I go out for 2-3 hours a day that for the next few days I feel aweful. I could be climbing a mountain or just riding in a car, but if it's over the 3 hour limit I am going to feel aweful...

Jacquie

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I agree that if you push you feel bad and if you rest you feel bad. It's a case of degrees of bad. I have learnt not to push too hard, too often as I have paid dearly for it. I have been resting now for 2 months and still feel bad, so I am back to pushing - but not too much. Slowly, gradually and giving myself time out seems to work for me. I guess everyone has their own formula as to what works. I have not yet found the balance, but I hope you can! <_<

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If I push myself, I am usually in bed for 2-3 days. My sister tries to protect me from crashing and doesnt like me to do too much. But sometimes I pay for doing nothing like you all said, so I would rather live and crash than not live and crash anyway.

Donna

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I have had real, big-time, huge, unbelievable, colossal and yet, somehow, routine trouble knowing when to say ENOUGH, on both counts: when has it been too much pushing and when it is time to say, "Once more unto the breach!!"? :)

My new strategy (still under construction :D ) is a few hours on, a few hours off. D-A-I-L-Y. (like the others, if I schedule full on or off days, I get into trouble) The "on" hours include anything physically or mentally taxing. The "off" hours are for taking care of me. The new twist is that I'm scheduling myself to have downtime so that I can take advantage of it if I need to & to include the stunning notion of taking care of myself B) . It's like a frickin' revelation!! This is my new plan, anyway, slowly being implemented while recovering from yet another ***-kicking 2-month exacerbation. I'm trying to reapproach my life and say "No" more often than I used to. Will have to let you know how this new lease works out in the long run...(fingers crossed!) <_<

Before this most recent POTS butt-whuppin, I would totally overbook my day--only very, very rarely scheduling chill time---- do that for a few days, which would turn into weeks, months.....then I would end up REALLY sick, AGAIN. :o (Go figure, duh) And people around me are wondering why I can't do as much as before.....and I can't blame them>>I led them right to the conclusion that I can be Go-Go-Gadget Lulu!! So, what have I done when I've gotten "better" again?? Done the whole darn thing over. This is the definition of INSANITY!! You see, the dilemma is this: when I have my good days, it's so EASY to overdo it. SO EASY to "pass" for a normal person, keep fooling myself, stringing those overdone days along 'til I drop. What to do?

Quote Shakespeare, again, I guess: "This above all, to thine own self be true."

Now, if I can just figure out who the heck she is, we'll be in business. LOL.

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I try to only be active and out of the house for four hours a day, and unless I'm having a bad day, I try not to lay down until after 8:00pm, instead I half-sit or recline on the couch, but don't fully lay down.

Some days, I feel like I could be more active, and I do a little extra, other days I know I need to keep my toosh on the couch, or even in bed.

I used to be an athlete, and when I was training, my motto was "just to the edge". I worked my body just to the edge of what I was able to handle, then backed off. Now, I have the same motto for my daily activities. I go "just to the edge" of what I'm able to do...even though my new edge is going to class, or going to the mall in my wheelchair. So far, that kind of outlook has worked for me, and I have less crashes because I'm not spreading myself too thin.

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I'm sort of surprised by reading these posts, but I guess that we all have different levels of functioning. The times when I "push" myself to go out of the house automatically cause me to suffer for hours and/or days afterward. Usually I can strike a good balance of rest and activity when I am at home. Short trips out are ok, but require rest afterward. I've never found that pushing myself makes me feel any better. If my body says "no, don't try that" and I do anyway, I always pay the price....always.

I feel like I operate with a very small budget of energy and I constantly have to balance that budget. Like, going out for a ride in the car requires 1 energy point and walking to a store requires 2...and so on...but I only have so many energy points for the day before I'm out. Some days I think i start out with negative points :lol: That's how i usually determine what I can and can't do during the day. I evaluate how much my body has to give and I try to use it up. I've never found that going over my limit makes me feel better. In fact, I usually pass out if that happens. Also, I feel like when I have days at home to rest, I do feel better. I don't stay in bed all day and get deconditioned, but I do rest and lay down when I need to and it really helps me to feel better and regain strength.

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Guest CyberPixie

Wow, a ton of replies, thanks you all.

Not just me then ;0)

I guess it's a case of pacing. I'm certainly not gallavanting all over the place. I'm mostly in bed. I do a lot on the laptop though and potter about doing bits and pieces. I'm not well enough to go out of the house. But I notice I'm better off doing things than doing nothing at all.

Mumbles to self *pace, pace pace!*

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I have given up trying to work out how this illness works ... sometimes i do more and feel great because of it sometimes i do more and suffer for a month after.

Now i just take it hour by hour and if i feel shakey i dont push it. I just make sure that i dont have too much planned for any one week or weekend so then i can do what i am supposed to do (or postpone things rarely) and rest if i need to. It can be annoying as i think due to my limiting my activites i may actually achieve less than i am really capable of but i know when i really push it i can really pay for it. It is mighty frustrating.

In years past i use to go out twice a week but the whole time i was in pain. I would appear normal to the outside world and people would kind of comment that i was not at school but i could still go out and see my friends but emotionally i HAD to, i was so depressed being stuck at home and not seeing anyone my own age (friends lived over a hour away and i am a only child). Emotionally i think sometimes you need to push it, i am glad my mother understood that, my father found it a little tougher to understand (he thought if i could go to the movies i could go to school).

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This whole thing has taken me on an emotional whirlwind.

I was one to fight the down time, I'm a person who does for others and not myself and its hard to take time to rest.

But maybe thats why when I'm down it takes months to feel like I can get up again.

I've spent the last 5 years trying to accept it and just can't seem to find that even-keel.

I think sometimes I'm more hard on myself than the illness is.

The anger clouds my judgement, while everyone normal bounces around me I just sit there and think

"God, pain is a lonly thing"

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It is funny you say that as i use to try to help anyone and everyone but overtime with this illness i became more selfish. I help my friends but would not go out of my way otherwise. Only recently have i had the energy to reach out to strangers again. I hope your energy returns so you are able to do this without suffering for it. Unfortunately helping people can be quite a drain!

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I only have a mild form of POTS, but for me the more I do physically, and the more I am upright the better I feel.....

Laying down is the worst thing for me.

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i LOVE JaneEyre's idea of energy points!!! Thanks! I think that will help me fine tune my doing/not doing even more. It's so new to me to be thinking about "looking out for #1" I've really got to use any tools that might work to keep me from gettting so blasted sick I can't function. I always help others, it brings meaning to my life, but if I can't do that (because I haven't taken care of myself) then I feel really bad emotionally and it ripples from there. I resonate with what so many have posted on this thread.

I know there's a balance for me. I've had it. Then the wind blew, the boat rocked.....it was gone.....now I'm on a quest of sorts to bring some control back to my life. We POTSers know that can be difficult sometimes, some more than others, some less than others. I am so grateful to what everyone has posted on this thread so far...I am finding it so very very helpful!!!

With gratitude and light,

Lulu :lol:

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I have done the gamet in my life...From two years pretty much bed bound (on good days just house bound) to working and feeling ok as long as I was careful....to various stages inbetween. But I got from one point to the other by pushing myself, slowly and at my own pace. I live a very scheduled life, but I determine the schedule. And like someone eles was saying...I schedule downtime! I have to or else I will crash.

I cant compete on the normal people stage and by their standards, I hate that fact...but it is true.

I have found that I can only pretend to be normal for about two days...if that...and then crasho..I am so sick for weeks.

When I really went thru a time in my life where I had to push myself...I made a list of people who worked or lived along my bus route, and If I had to..I would drop in. There were a few days where it took me two hours to make a 20 minute bus ride...A few times I made it as far as my dads office and then he or a friend wold drive me home...

When I was able to get a car and we had moved within 10 minutes of work the parking guys gave me free parking so I would not 'look so tired and sad' when I got to work...Those were the sweetest guys!!!

I like the energy points idea too!

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I'm with all of you. I do find that I am able to do more and more over time, slowly. But I can push myself only so much. For me the way that I am able to stay mostly functional is to stick to my routine and eat right, sleep on time and light exercise. I have to stay away from the activities that trigger POTS like stayingh out late, too much exercise, alcohol, etc. I need to take breaks in between activities and also take days off in between the days that I am active. If I push too hard, I get reallly bad headaches and nausea which last a day or two. If I really overdo it, I have to pay for it for weeks sometimes. It's so hard to find that right balance. It's so great to find people who understand!

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Guest CyberPixie

I'm the type of person who when there's something to be done I have to do it til it's finished, even if it means making myself ill. I can't help myself. Always been that way. I would rather do something myself straightaway than wait for someone else to do it for me too. Slowly learning not to do all this but its so hard when it's ingrained in your personality.

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I think you have hit the nail on the head Cyber Pixie, "it is ingrained in my personality". It seems from reading everyone's threads that we are having to battle ourselves and our instinctive drives. This is why it is so tough on us all to find the right balance. I know that my natural way is to push myself hard, to achieve, to help others at my own expense, etc. Nurturing myself, knowing how to set limits and even harder, sticking to them, is a major challenge. Even when I am resting, I am constantly fighting the inner voices telling me to snap out of it and get moving. I am improving and will continue to try and find a balance, as the crash and burn is so taxing. I am not sure how to reconcile my ingrained ways with my new learned ways, but I am sure it can be done - some day!!! Glad to know that we are all in this together. :blink:

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