Selfcare Or Anxiety?

[carinara]

A therapist once told me, that i should try not to let POTS effect my life. In his theorie i should go anywere and do anything without even thinking or worrying about getting symptomatic. And if i do feel bad, i should just sit down and wait until my body gets in balance again! His opinion is, that if people worry about what might happen and it stopps them from doing things, they are suffering from anxiety.

His opinion really got to me, because i dont really see it that way. I explained to him, how i have to watch and plan every little thing in order to make it through the day. Like taking my medicine at the right time, getting up 2 hours before i actually go to work, always use my chair (with rolls on), not to eat to much, not to talk to much, not to get stressed or excited and 1000 other things.

I told him that if i feel ok, i go most places as long as iam not on my own. Lets say my family would want to go out shopping. If i would feel ok i would not hesitate to join them BUT, there are a few things that are necessary for me to do so. First of all, i would not be the one who is driving the car (because it makes me really dizzy at times and i never know, if i manage driving home again). Then i would only come, if its cool outside and if there are places to sit. (can not stand for long). Sometimes it works out ok and i feel well with it, at other times i dont and i start feeling sick! Those are the times when i really appreciate that somebody is with me and that i don't have to worry about how to get to the car or driving home and so on. Of course, if it went ok and i felt well i most likely would have managed going on my own in the first place, but i never have the urge to do things like that totally on my own anymore because of all the bad experinces i had in the past 10 years before i got diagnosed. I would just be a little more nervous and watch myself in order to not overdo it and bring the symptoms on and thats not worth it for me, If somebody is with me, i can just totally relax because i know that if iam getting symptoms (which i get on a dayly bases anyway) I can just concentrate on getting better and not worry about other stuff.

Iam qiuet happy and content with this set up, its just the above mentioned comments from some people that put pressure on me. So that i catch myself analysing quiet often, should i be doing this or that on my own or is it ok if somebody is with me?

What do you think? Is that some kind of selfcare or is it really some kind of anxiety?

Thank you all so much for your help and i do want to let you all know, that i really love this site! I cant put into words how much i have learned here and how much i appreciate all your posts. I do not know how i would have handled the time after my Diagnosis (one year ago) without the help of all of you. I think iam still the only POTS patient in Germany, never heard of another one. Take care

carinara

[bjt22]

Obviously, this therapist has never had children. If he things planning on contingencies is a sign of an anxiety disorder, than every mother I have ever known is suffering from one. Seriously....I think I deal with many aspects of my condition because I'd been a mother for a long while before and was very used to planning and making concessions in order to do not only the things I wanted to do, but the things I needed to do. Ofcourse, I guess I could have just ignored the fact that I had kids and gone on my merry way, but somehow, I don't think that would have been a very good idea!

I know what works for me. I know what doesn't work for me. I know that if I go out, I need someone with me because I will become symptomatic and quite likely so confused that I lose track of what I was doing in the first place. I also don't drive, because, well, you know, it just probably isn't a good idea when you're extremely light headed, having your vision blur every minute or two, and quite likely to black out. If there's something I really, really want to do, I do plan....that's the only way I'd be able to do it, and I do have to plan to have a couple of days of doing completely nothing afterwards. Now, none of this is like "freaking out" over being someplace and becoming symptomatic....heck, many of us are symptomatic just going to the bathroom and no, this doesn't cause anxiety. We just deal with the realities of our lives....like everyone else does. The reality of my life means that sometimes, I don't do some things because I know how bad I will feel and I choose not to feel bad.

[summer]

This is not anxiety, it's just good common sense. If you had some other type of health issue like epilepsy or severe allergies you would take precautions to look after yourself. Knowing our limitations, and avoiding situations that provoke symptoms are the best way to continue to participate in activities with our family and friends. This is certainly not anxiety... it's coping, and I'm surprised that your therapist does not appreciate that.

[Csmith3]

Definitely self care. I think we've probably all tried the "ignoring POTS and hope it goes away" strategy, if only before we got a diagnosis and wondered if it was real. Well it didn't work for me, and I'm guessing others feel the same.

If (only!) we could keep POTS from our minds, I think we would feel a bit better as there is a tendency to be on the watch for symptoms in case things suddenly get worse, and perhaps err on the side of caution. You could say this about any illness, but it's just a distraction technique and fundamentally, you are still being ill even if you try to pretend for a while that the tachycardia etc isn't happening.

The main point is that without planning and pacing, there is a high risk of a crash and we all know that is to be avoided at all costs. I think that what non-POTS people don't understand is the difference between a POTS episode which may waste a few hours/the rest of the day and having a crash which can take weeks or months to recover from and requires a total change in lifestyle. Would they go for a day out without a care in the world if the price was spending the following 6 weeks in bed to recover?

So I'm with you - planning and pacing is the way to go to maximise what is achievable over the long term.

Perhaps you should take a copy of the list of responses you get to your message to the therapist!

[lorrie]

The therapist probably wouldn't tell a diabetic to go anywhere they want and put it out of their mind...they have to plan to have insulin, etc. with them and be ready if they become symptomatic. POTS is a very individual disorder and everyone has to learn what they can and can not do and how they must plan. You are doing the right thing...

[nunibenuni]

I think that your therapist was being extreme. Pacing is really important. I'm doing a pain clinic currently and we learned a bit about it in our psych class and in OT. The psychologist used the metaphor of the stove and said that the pain (or POTS) should be put on the back burner. That means that you have to pay attention too it so that you don't make it worse, but it shouldn't always have your complete attention. I think that is what you were thinking too. I think that as long as you are happy with how you are handling your POTS, you should keep on doing what you are doing.

[Ernie]

Hi,

There is only one positive thing I got from Vanderbilt. I had to see a psychiatrist to get evaluated for mental disorders. I asked her if I had anxiety when I worried about fainting when I had to stand and actually did faint. She said that in my case this is not anxiety because I actually do have the physical disorder. It's not as if I was afraid to have the fainting but never had any faints. So when we have to set our limits because we are sick we don't have anxiety. We are takihg care of ourselves.

If we did not respect our limit the doctors would tell us that we make ourselves faint or be sick on purpose to get attention or all the other stupid reason they come up with.

I believe your opinion is right on the dot.

[DancingLight]

Amen to everyone's answers!!!!!

I couldn't say any of it better!

We all wish we could 'ignore' this darned thing and be out living 'normal' lives...but that isn't how this illness works!!! In reality, being planful and ritualized actually makes us MORE able to succeed at going out and doing things I think...or at least having that possibility. Ya know?

What everyone wrote was so great and so reassuring.

emily

[jump]

Agreeing here, too!! Sounds like self-care to me.

It seems like the real problem here is helping people in your life understand how best to help you. Perhaps if they had some concrete ways to help you cope, they wouldn't suggest pointless things like the therapist did.

I *do* think that if there's something you really want to do, it's important to find ways to do it while still being respectful of your illness. Like if you really want to be able to go for walks, then start by taking short walks with someone and work your way up to it; I do believe if there's something you're really dreaming of, you should let yourself make small goals to work toward that dream even though you are sick. But that doesn't sound at all like what you are describing -- to me, it doesn't sound like you are wishing to do things but are too afraid. It sounds like you know your limits and, while of course you'd rather be well and not have to think about this, you've found a way to live your life and still take care of yourself.

You feel happy with things - don't mess with success! Don't let others' judgments make you doubt your self.

jump

[hollie]

I'd say stick with what works for you!! Otherwise, you sill over-do it and you'll pay for it!

Hollie

[ajw4790]

Hi,

I agree with the others here too. I guess I look at it from the standpoint of if I did not take precautions or prepare what would happen (or as happened in the past- that I have learned from)? So, if I go out and do errands without enough to eat, not properly hydrated, and in the heat what has happened before??? So, to keep it from happening again, I try to keep a snack and drink handy, and avoid the heat as much as possible.

There is the other extreme however of the possibility of someone packing/preparing for every posssible event and overstressing about it etc. I guess say for example that I had only once had a problem with standing too long and getting dizzy, but then I mapped everything out to avoid this and took a seated cane/walker or something with me based on this one occurance- that could have been more related to not being hydrated etc.

Not sure if that makes sense. I guess I was trying to point out that there is two ends of the spectrum and a lot of area in between.

[momofsara]

I'm in total agreement with everyones responses. It is vital to plan for the possibilities of becoming symptomatic at all times, especially if you are away from home. Definitely not anxiety, just good common sense... Susan