The Thing About POTS

[MeganMN]

Today I was thinking about one of the things that I struggle with the most with this diagnosis.  I am super thankful and blessed to have good days, but I constantly find myself trying to talk myself out of what I really need to accept.  Yesterday I was able to go for a bike ride with my family (win).  I was dizzy and had a headache, but I went! Today, despite many medical tests and being up all night with a sick child, after a nap, we went for a walk together around our land (win).  I am now on the couch with a terrible headache, but I went!  I find that when I have good days, I try to pretend that none of the reality of this diagnosis is real. Then I get dizzy, or a headahce, or tachycardia, or whatever, and I remember, nope, this is real. Sometimes I feel like it would be better to have some illness that was more concrete. POTS is so ambiguous, so vague, and so debilitating, but sometimes.not at all! it is tricky.  

[Pistol]

@MeganMN - this is the million dollar question: how much can we do? We all have this problem: good days are so precious that we want to do all the things we normally are unable to. However - that will land us back in bed. What I have encountered prolongs the good vs bad days: I do the same amount of activity and rest whether my day is good or merely acceptable. Unless I am in a flare ( and activity is not possible ) I do my exercises, chores and resting the same but on bad days I do shorter exercise periods. On a super-good day I may tackle something that is harder for me to do ( gardening, certain house hold activities etc ) but spend the same amount of rest. I have learned the hard way that thinking a good day allows me act normal  will make for a very short day - followed by days of recouperating. 

Also - when I know I HAVE to spend a day doing things that are too hard for me I will prepare by resting the day before and plan on not being able to do much the following days. I approach this subject like an " energy savings account " - our energy is so precious and hard earned that I do not waste it. Having said that - a bike ride or a walk with the family is certainly worth the energy!!!! Although spending the night with a sick kid will zap everything right out of you. In the past when my daughter was sick ( she has asthma, so she gets very sick very fast ) I would spend days and nights tending to her and working purely on adrenaline. And then - once she was better - I would crash badly. 

8 hours ago, MeganMN said:

I find that when I have good days, I try to pretend that none of the reality of this diagnosis is real.

Yep - DENIAL!!!! I had this misleading theory in the first years but have found that it is very, very inaccurate. Good days are something to be celebrated but are not our base line. --- I hope you will continue to be able to enjoy them!!!