Coping with Vastly Different Capacity When in Flare

[RubywPOTS]

I recently experienced one of the worst flares of POTS I have ever experienced. I missed work for days and could not walk more than three minutes across my college campus without stopping to sit. My service dog was working overtime and I could not even play with her to reward her for her hard work.

I struggled to cope with the difference between my capacity when I am in a flare and when my POTS is well managed. When my POTS is well managed, I can run a mile on the treadmill in under ten minutes and lift moderate weights! When my POTS is well managed, I can party like a regular college kid late into the night (with lots of salt and a little caffeine, but still)! But when I am ill, I can't even stand in line long enough to get myself food. 

I started to realize that when I am ill I need help getting myself places and because of my being on a college campus, this may mean a handicapped parking spot (because without one, my car would be a fifteen or twenty minute walk). I feel confused and guilty for thinking I need this because sometimes, I am healthy. And sometimes I could run the fifteen minutes, but other days taking the stairs is equivalent to thirty minutes of sitting on the ground coping with an episode. I need assistance getting to Dr appointments and need a car to take my dog to the park for days that I cannot walk or play with her myself. On days that I am struggling, I need transportation that isn't my own two feet, but I feel guilty even considering a disabled parking permit when there are days that I can go without it...

What do I do? Has anyone else coped with vastly different capacity or quality of life when you are experiencing episodes and when you are not?

[Jyoti]

This is so confusing, isn't it?  I think a lot of us experience swings in our capacities and at least in my case, they are often unpredictable, which throws me.  It also throws the people around me, who I know are thinking: but you went out for a 3 mile walk yesterday, came home, cooked dinner for a friend and sat at the table chatting all evening.  How is it that today you can't even sit up?

Well, I know for me, some of the answer lies in just how much I did the day before!  If I am imprudent--and who doesn't want to be, to join in life and live it as fully as we can when that door is open?--I pay a price. But even so.....there are times when I just don't know why, or there are things that I HAVE to that leave me flared.  

I have kids and they are totally baffled.  They want me to be reliable and the sad fact is that being unreliable is part of this illness. At least I think most of us would say that.  

I guess over time I have learned to try to be unapologetic--this is just what I deal with.  I never know if I am going to be up or down, and all I can do is to make the most of the ups and minimize the downs.  I think that over time, people who are close begin to understand how this works.  And the rest of 'em--well.....I'm not going to worry too much.

It is good you can run a mile in 10 minutes some days.  I bet that is really helpful to your overall situation.  But as you are seeing, you may need a handicap plate and other accommodations, even if you don't use them all the time.  Just 'cause you have the right to park in a handicap spot doesn't mean that you need to.  Use it when it matters.  Set yourself up as best you can for the bad days and then live as big as you can on the days when your body allows.  It sucks and I am sorry you have to deal with this, but I am glad that you have good times as well as bad.  Just my thoughts.....

[Pistol]

@Jyoti well said, not much to add! @RubywPOTS I have a handicapped tag, and I dont even drive! I have it for the days that I need to be driven somewhere and cannot walk too far. If I feel well and can walk then I dont even park in a handycapped spot. So use it when you need it and dont when you are well!

[Sarah Tee]

@RubywPOTS, I also struggle with differing levels of symptoms. (Mine follow a different pattern – I feel pretty terrible during the day, but in the late afternoon or evening, my symptoms often resolve completely. I call it Jekyll & Hyde syndrome.)

I wonder of it might help to reassure you of your need for support to think of other illnesses that come and go. For instance, people with migraines or relapsing remitting MS go through periods of incapacity and periods of relatively good health. Even people with what you might think of as constant chronic conditions go through ups and downs. For example, people with Type I diabetes can go through unexplained periods during which their blood sugar is very unstable even though they are carrying out their usual management plan and diet. There must be a long list of conditions that come and go, or at least wax and wane.

Also, on the days that you don’t need to use the disabled parking permit, you can pop it in your glovebox and not use it.

If anyone asks you about it, you could say something like “I have a condition that comes and goes, a bit like migraines. Some days I feel okay, but other days I am at risk of fainting if I exert myself”.

And maybe you could find a dog-loving friend, family member or neighbour who can’t own a dog themselves but would love to help out with occasional dog walking / play sessions when you aren’t up to it.