This is exhausting

[vepa]

I'm wondering if anyone has any tips/tricks/motivation for the everyday living with dysautonomia and other chronic illnesses. Obviously the flares suck and the moments of super high heart rate or super low BP or other bad symptoms are awful, but I find that sometimes the most exhausting part of this is just the amount of daily self care I need, even on the good days. For example, my doctor has me drinking 3 liters of water a day. Even just having to do that day after day after day can get so miserable. Then you add on the meds, the salt, the diet restrictions, the layers of clothing due to body temperature regulation issues, the activities I can't participate in, and all of those little things that healthy people never have to think about. Those are the things that wear me down the most, and there's no end in sight. Sometimes I end up giving up on it all, just to regret it once my symptoms flare. Anyone have any advice? 

[MomtoGiuliana]

I know the management itself can get very tiring, and even just becomes the daily focus and all you can do on the worst days.

From my experience and I think for many with this condition, symptoms do improve with time.  So I think you have reason to hold on to that hope that your life will not always, every day revolve around intense work of managing your symptoms.  There are a variety of meds that seem to help too.  So you may want to explore this with your doctor.  For me, I improved immensely after being very ill, with a low dose SSRI and beta blocker (along with increased fluids and salt).

[Lily]

Yes, it all sucks quite a lot.  What mental tricks will help you cope sort of depends on how your mind works, but here are some thoughts.

1. Think about how it could be worse, and be thankful that it is not.

2. Read about other people who worked hard and accomplished something, regardless of what it is.  Maybe one of these people strikes you as motivational.

3. Focus on daily or weekly goals instead of the big picture.

4. Every day write down one thing you are grateful for.

5. Giving up means the bad stuff wins.

6. I read somewhere that consistent aerobic exercise eventually (after a month or two) results in increased blood volume.

7. 25% of people remain severely disabled.  That means that 75% of people improve partially or completely.

8. There is a blog of a POTSy who runs half-marathons!

9. Perhaps you need to allow yourself to mourn for the life you lost to POTS?

 

May I say something religious?  If so, highlight the line below to read the white type.

10. I'm Catholic, and if God is the way the Catholic Church says He is, then He wouldn't allow something bad to happen unless there was some good that could come out of it.

 

That's all I have for now.  Motivation ultimately has to come from within, but we are always here to cheer you up.

 

[cmreber]

I have had some pretty low points throughout this whole process, and I completely understand the utter exhaustion of it all.  At times it feels like a full-time job just keeping our bodies from turning on us completely!  (Not to mention the guilt that comes with having to give yourself so much rest, etc!)  There were times when I was in a major flare that I just kept thinking that I couldn't do this day after day.  But, for many of us, it does get better with time, with self care and treatment.  I have found that, while difficult to get started, exercise is HUGE for me, as was finding the right medication combination (beta blocker, low dose SSRI for me).  Surrounding yourself with supportive people is also key, which is why I found this forum to be extremely important along the way.  Finding new hobbies also helped me tremendously.  Prior to my POTS diagnosis, I was super active: anything outdoors, dirt bikes, racing motorcycles, surfing, hiking, snowboarding...you name it, I was there!  Obviously, I had to cut back on these things (and eliminate some altogether) which led to me falling into a deep depression for a time.  But then, I discovered new interests that are more POTS-friendly, and in doing so, I found other community to replace what I had lost.  For example, I really got into the tv show Supernatural, and have gone to conventions and have met lifelong friends because of it.  So, while I had to lose some things, I've actually gained in other respects.  And now, I am slowly getting back to the things I used to be able to do, which makes it all that much better.  I think the key is letting yourself mourn what you have lost, because no one can truly understand what we go through unless they are there, but then trying to keep moving forward and seeking out new things to love about life.  Most importantly, always keep fighting because the self care will truly be worth it, even if it doesn't seem like it some days.

Hugs to you, and we are always here when you need to vent! <3