POTS flare - what I do to survive

[Pistol]

I have spent most of the past 2 months in hospital recovering from several serious health issues, including COVID and sepsis. All throughout this POTS was well behaved, and I had no significant symptoms other than increased HR and fatigue. Now I am home on IV antibiotics and feeling much better, finally considering to go back to trying exercising on my rowing machine or take a daily short stroll outside when - BAM!!!! POTS rears its ugly head! It has been so long since I lived through a real flare that I am almost caught by surprise, and I forgot how frustrating it is to be so helpless after having found control over the symptoms! 

Here is what I do to get past the flare as soon as possible ( hoping to, at least 😞 

1) For hospital induced deconditioning I do exercises in bed as well as get up every hour, and I try to exercise while doing dishes ( if able ) etc. Rowing machine is yet out of the question, so I concentrate on abs and legs, since they are essential in aiding with orthostatic tolerance. But if something seems to be too much I don;t do it - it is so easy to drain a little spurt of energy on exercise when we could use it on ourselves or family!

2) Talking on the phone, reading, doing bills, listening to family ... this is all as draining as doing dishes. I try to avoid it and try to find activities that GIVE me energy, like knitting or simply sitting on the porch listening to birds. 

3) Of course drinking fluids and eating healthy, every 2 hours rather 3 big meals. I find herbal teas to be both enjoyable and hydrating. Lots of fruits and vegetables, although during flares I seem to crave protein. 

4) I do not stress over the fact that I am not currently able to leave the house - church, stores, post office, even dental visits or hairdresser  - they will have to wait. Unless it is an important doctor visit that cannot be made a telehealth visit I don't do it until I feel better. And thankfully I have my husband who drives me anywhere I need to go, since driving would be impossible for me to do in my current state. 

5) I give myself permission to feel sorry for myself. Enduring the limits of a flare is really disappointing, depressing and frustrating. Despite the fact that I am a seasoned POTS veteran and lived through flares many times ( and improved after each one ) I still find myself impatient with the slow progress and expecting more than I should each day. Then I feel down and sorry for myself. If stuck in this mood I could easily sink into a depression, but thankfully I have sisters and friends that lend me a half-open ear to listen to my whining .. and letting it out instead of allowing it to fester is vey healthy. 

And the most important thing I do is to remind those around me that I will need time, and that - since there is nothing wrong with their hands and feet - they will have to cook their own food and do their own dishes for a while. I will often retreat to my bedroom with a lit candle and heavenly quiet while the family banters in the kitchen. 

Eventually - and very slowly - strength and endurance will return, and Life will go back to normal. Until then I will be gentle to my body, patient with my mind and grateful to my spirit! 

 

[MikeO]

So sorry you have to endure one more problem after what you have been threw. Hang in there @Pistolhopefully your POTS flare will clear up quickly.

[Pistol]

Thank you, @MikeO, I so appreciate your well wishes! I am sure that in time all will get back to the POTS normal ( whatever that is ... )

[Heartbroken]

Wishing you speedy recovery Pistol, I mean Dysautonomia normal! you are always a great help for all of us. I wish if I were your neighbor, I would've helped you bringing you whatever I cooked and baked.

[Pistol]

Awh  @Heartbroken - I wish you were my neighbor too, because I could just see us having a cup of tea and some of your cake! Thanks for your well wishes, I am thinking of you!

[JaneEyre9]

So sorry to hear you have been hit again after surviving some brutal health events. You gave really good advice to others here!

[MomtoGiuliana]

So sorry you are having a flare up.  Please take care.

[MTRJ75]

Ugh, what a nasty few months for you. 

This probably goes out the window if we're dealing with damage rather than dysfunction, but I sometimes find that when my body is focused on dealing with something else, it almost "forgets" to be dysfunctional autonomically. It's beyond frustrating when you think you're well enough to do something only to pay a heavy price for it. 

[Pistol]

6 hours ago, MTRJ75 said:

but I sometimes find that when my body is focused on dealing with something else, it almost "forgets" to be dysfunctional autonomically.

@MTRJ75 - it's funny you would say that, because that is what happened to me! When I was really ill, dealing with high fevers, pain and breathing issues , it was almost as if POTS did not exist! My sister, who also has POTS, said that when the body is in survival mode it deals with the most important things, and nothing else, and that POTS will show up when the illness is gone and I am recovering. I did not really think that would happen - why would the body work better when so sick, only to return to being uncontrolled when all is better? But she was right, and that is exactly what happened - the illness(es) are gone, the body is recovering and POTS returned. 

It is a peculiar thing, this body of ours! 

 

[cmep37]

🤗@Pistol however long you have had POTS for, you still have to wake up every morning and deal with the fact that you have it today!  And if it's been a while since you flared and you've been managing better, it's always more difficult to go back to that level of symptoms again...   You are doing all the right things and the flare will subside, it's just miserable waiting for it to pass.  Be kind to yourself and hibernate as long as you need to - you will come out the other side!

 

[Pistol]

@cmep37 🤗☺️

[Delta]

On 11/9/2021 at 5:01 AM, Pistol said:

2) Talking on the phone, reading, doing bills, listening to family ... this is all as draining as doing dishes. I try to avoid it and try to find activities that GIVE me energy, like knitting or simply sitting on the porch listening to birds. 

@Pistol,

Thank you for posting - this, in particular, is enlightening and helps me make sense of some things.  You are kind to spend time and (limited!) energy to post helpful information for others when you are not feeling your best.  I hope this flare will take its leave of you soon. 

[Knellie]

@Pistol - I wanted to thank you as well for taking the time to write that out! That is going to come in handy in my next flare! I am so sorry you are feeling crappy!! I hope that you feel better soon!! We'll keep you in our prayers!

[Pistol]

@Delta @Knellie - thank you! I am glad my "musings" are helpful. Thank you for the well wishes, they are appreciated!