POTS is like cabin fever

[Pistol]

So, with social distancing we now have a very accurate way to explain what POTS is like to people who have no clue: 

- we cannot leave the house, unless it is for necessary things such as food or doctors. 

- we cannot exercise unless it is something we can do in our home. 

- we often need to retreat to a quiet room to calm down ( due to simple things as conversations or other "stimulating" activities ). 

- dealing with the family can be overwhelming and stressful ( sad to say but true ). 

- there is only so much we can do to combat inactivity and boredom. 

- it is easy to become irritated at simple things and lash out at others

- monopoly can cause our BP to spike 

What other examples have you encountered?

[Nin]

All this is true! I was saying the exact same things to my mum today 😂

It's just not a shock to the system to me as this is how I've been living anyway. I'm just watching people around me falling apart already. 

One good thing for me is I got my children home with me and don't have to be crying every morning because I can't take them to school anymore.

[MomtoGiuliana]

I agree with you and I was thinking this week that many of us with POTS who have experienced months of being homebound are probably better adjusted to this than many in the general public.  We have learned to accept limitations and uncertainty in our lives whether for long stretches in the past, occasional flare ups, or our current situation.  We may be faring better psychologically than many others for this reason.  I think many of us are already taking measures to avoid illness too, so that is already second nature to us (washing hands, maintaining distance).

[edriscoll]

DINET's VP, Chelsea Goldstein posted this question to the dysautonomia community to see what tips people came up with to explain to the "healthy" world, what  we have discovered during our years of frequent stay-at-home time and isolation.

2020.03 V2 COVID-19 tips_CGoldstein.pdf

[TigerLily]

Oh man this had been my life for months:(

I hope it gets better but every time this happens it worse and lasts longer. 

Now that my husband is home all the time he is disgusted with how much I sit around.

And that overstimulation sucks. Can't hardly even listen to music.  And now that everyone is home all day I am on the go picking up after people now. 

[MTRJ75]

I've now been mostly house bound for almost two years and seeing everyone around me lose their minds a few weeks into it, I tell them a month or two is nothing. It took me a full year to lose my mind. 

The only problems have been getting regular food deliveries and what's going to happen if I physically need to see a doctor. 

Strangely enough, I'd been feeling a lot better since this started, though not as much this week. I almost considered starting to exercise again, but then realized I'd be in a h*** of a predicament if I put myself in a situation where I need fluids.  

But otherwise I feel like I've been preparing for this for years. 

[Sushi]

On 4/25/2020 at 3:25 PM, MTRJ75 said:

what's going to happen if I physically need to see a doctor. 

With the current crisis, insurance is paying for remote visits by Skype, Facetime, Zoom etc. I had a Facetime appointment with my PCP this last week. Of course the doctor can't touch you in an exam, but they can see you carefully if you are close to your camera. I hope this will continue in the future as it would help many of us. 

[yogini]

On 3/25/2020 at 6:30 AM, Pistol said:

So, with social distancing we now have a very accurate way to explain what POTS is like to people who have no clue: 

- we cannot leave the house, unless it is for necessary things such as food or doctors. 

- we cannot exercise unless it is something we can do in our home. 

- we often need to retreat to a quiet room to calm down ( due to simple things as conversations or other "stimulating" activities ). 

- dealing with the family can be overwhelming and stressful ( sad to say but true ). 

- there is only so much we can do to combat inactivity and boredom. 

- it is easy to become irritated at simple things and lash out at others

- monopoly can cause our BP to spike 

What other examples have you encountered?

Though I was not as restricted as above, I am used to staying home by choice and did this for long periods as needed - and I think most people with dysautonomia are.  It's kinda funny to see people freaking out and being upset about not being able do to thinks like go to the movies.   I probably didn't do that for years because I didn't feel up to it.  There are probably many things I will skip doing for a long time even after things open  - because getting any kind of illness or virus risks re-triggering dysautonomia.  Unless there is a vaccine or a way to be comfortable I won't get sick it probably isn't worth it to me.