Being brave can pay off

[Pistol]

For the past years I have had one big wish: to ride a horse again. I grew up riding but since onset of POTS 11 years ago I have not been able to. Most of being around horses is done standing, so even just getting ready would throw me into a tail spin. 

Well, Saturday was a beautiful fall day, I had just had my IV fluids the day before and I felt strong, well and - reckless! So my daughter and I drove to her stable in VA ( she does show jumping there ) and while she readied my horse I sat waiting. Riding is actually a POTS-friendly exercise IMO, since you sit and other than using your leg - and back muscles you are relaxed. I cannot even explain to all of you how wonderful it was to be back in the saddle! I swear the horse enjoyed it as much as me! And we rode up an old, inactive volcano from which we had the most incredible view of the western VA highlands .. vulchers were circling directly over over our heads, that's how high we were, the sky was clear and we could see miles and miles. I had not been out in the weather like that for a long time, since I am mostly homebound. Feeling the wind and the sun hitting me, and the strength of the horse beneath me, forgetting about what could happen for once ... or better yet: NOT CARING about what could happen for once ... this is what I call a victory!

Of course I had to pay for it, of course have I been in bed ever since, and of course will it now take a few weeks to get back to normal. But it was so worth it! The saddest thing about suffering from a chronic and disabling condition I find to be the loss of memories we create. We are so often confined to the inside that we rarely allow ourselves to experience the simple pleasure of the elements or even nature.  As a result our world shrinks and we deny ourselves the cheapest, simplest, most natural gift there is: living. I don't mean surviving, circulating blood or functioning in our roles. I mean REALLY being alive, breathing air, feeling, seeing, hearing, exposing ourselves to whatever may happen. Taking a risk, being brave, not caring for once. In other words - giving our limitations the finger! 

I am incredibly thankful for this ride and am hoping to be able to go again. If you have something you miss, that you think if only you could do it one more time, that you are willing to risk a flare of symptoms or a set back in your abilities for - if it is something that is at all possible then consider this: 

JUST DO IT!!!!!!!

 

[HCD77]

Thank you for sharing your wonderful experience!! I’m so glad you were able to do this! Just reading your experience made me feel alive! I could just picture your wonderful day!!! 😃🐴🐎

[Always hoping]

So happy you got to enjoy yourself!

Be well.

[MTRJ75]

I have many reactions to this post. The price paid for simple pleasures is incredibly unjust. Although, you did get a positive experience out of it, which you appear to be happy with. Most times, we suffer for nothing. 

15 hours ago, Pistol said:

Feeling the wind and the sun hitting me, and the strength of the horse beneath me, forgetting about what could happen for once ... or better yet: NOT CARING about what could happen for once ...

The ability to think be able to think like this seems to be a common thread in many people who have eventually recovered from what I have read. 

[Pistol]

@MTRJ75 - I think that finding a way to - even temporarily - not caring about the symptoms of POTS helps to overcome the anxiety that comes with POTS. We can actually cripple ourselves by constantly being afraid of setting off symptoms. For example: I know you suffer from palpitations and their presence causes you a considerable amount of concern. Therefore you will react to them by activating the ANS stress response, making everything worse. I also feel like this often b/c triggers can cause me to go into seizures and overdoing things can cause inability to be active at all. Therefore I avoid anything that "could" cause my symptoms, resulting in - often - unnecessary avoidance of activities, denying myself things that I could otherwise enjoy and - as a natural result - anxiety and depression. 

By going on this ride I simply put all of that aside, decided that I will do as I please for once, not caring about anything that could/would/might follow. And the resulting setback in POTS symptoms was not at all bad in comparison to the joy I gained. 

Having said that - I am a stern advocate to listening to our bodies, avoiding triggers and generally living within our limits. That is the only way I have been able to function at all. But there is a difference between living in fear of POTS or living WITH POTS. If I expect a flare from an activity and prepare myself for it - then there is really nothing I have to be concerned about! 

[cmep37]

I am so pleased you had a wonderful day.  I have a similar attitude to doing things - you weigh up the pleasure you will get against the flare you will inevitably suffer and decide if it's worth it.  A couple of years ago I decided to go to a friend's wedding - I just thought stuff POTS, I'm going!  I planned it all out - my parents and brother were invited so I had plenty of support, I had my hair, tan and nails done the day before so I could stay in bed until the very last minute.  We turned up just before the ceremony started so I could sit down right away and after the ceremony was over there were loads of sofas at the venue so I sat and let everyone come and talk to me! The bride's parents were staying at the wedding venue and very kindly lent me their room to have a lie down between the ceremony and the meal. I made the decision to leave straight after the meal was over; I'd spoken to everyone I wanted to and the evening dancing would have been wayyy too much for me!  It took me roughly 3 months before I was back to "normal" but I'm still enjoying the memories of the day, probably more so since it was such a break from my usual routine!

[merkat30]

😍wow!!that sounds amazing so jealous 

[Rexie]

Thanks for the visuals! I grew up in Virginia and spent half my life there. Miss the Blue Ridge Mountains. Glad you had a wonderful experience! If you did it once you can do it again and each time will help retrain the brain so that post event crashes become less and less. 

Since starting a small dose of bacopa almost three months ago for CRPS and associated dysautonomia I have had a wonderful time with increased activity and joy and fewer periods of down time afterwards. Each success helps make this good more and more real. So keep being brave when you can and hold tight to the good. 

Preclinical Profile of Bacopasides From Bacopa monnieri (BM) As An Emerging Class of Therapeutics for Management of Chronic Pains, Rauf, Khalid & Subhan, Fazal & AM, Al-Othman & I, Khan & Zarrelli, Armando & MR, Shah, Current Medicinal Chemistry, Vol. 20, 2012

https://www.researchgate.net/publication/233842854_Preclinical_Profile_of_Bacopasides_From_Bacopa_monnieri_BM_As_An_Emerging_Class_of_Therapeutics_for_Management_of_Chronic_Pains

[Pistol]

I DID IT AGAIN! Woke up to a foot of fluffy white snow this morning and went sledding with the family! Granted - I only could go for one run and they had to pull me back up the mountain but IT WAS AWESOME! And watching them and the dog having fun was an equally joyful memory I downloaded on my hard drive!!!! To last for the rest of the winter b/c I am going to be down for a while. Sooo worth it!

[flowntheloop]

@Pistol WOOHOO! I'm so proud of you! As a nature lover who has been deprived of her passion (on more days than not), I can totally sympathize with the joy you are expressing here! I really miss my solo walks and hikes in general.