The monster in the room

[Pistol]

Here's the thing: no one can really understand WHY we become so "useless" from one minute to the other. Not even WE understand it, neither do our families or doctors. Example: I am doing good, had spent the last 2 weeks reconditioning and slowly coming back to my "normal" after a bad flare, thankful for every little thing I am able to accomplish without having to go back to that dreaded bed. So, in the evening I feel it's safe to stay up just a half hour longer to play a game with friends. The next morning all is well - until there is a thing with the computer that works me up so much that my blood boils ... and that's that. Adrenaline through the roof, heart pumping lead, thoughts and words a jumbled mess. I am so hyper I tremble and feel as if I am going to either faint or explode. So - back to bed it is, everyone else in the house is left to fend for themselves. There goes church on sunday, there goes my doctor's appointment on Monday, there goes the phone call with a friend I had planned for the weekend ... 

This Frailty STINKS ( sorry, just venting here ). My husband asked: " You just had a bag of IV fluids yersterday and should be feeling great today - what set you off?" ... hmmm, playing a game? Staying up just 30 minutes longer than usual? Getting frustrated over a piece of uncooperative electronic equipment? Did I feel "safe and recovered" from my flare too soon? Was it denial or wishful thinking? Was it MY FAULT? 

The answer is: it was POTS. It is what it is. Stuff happens. No pill, no amount of rest, no bag of fluids or bottle of water is ever going to give me stability. The monster is always lurking, ready to wake up and swallow me. --- This may sound depressing or frightning or too negative, but actually - it's good. It is good and healthy to be aware of what is real, what can happen and to not be surprised WHEN it happens, to get used to the idea that there is a sleeping monster in the room. So what if it wakes up and swallows me? I KNOW that it will spit me back out, all yucky and covered in spit that will need a while to clean off. But then it will go back to sleep and I will go on with my life. 

It is what it is. 

[p8d]

Oh @Pistol I am so very sorry that this happened. I know the feeling all too well. Try to break the routine that helps even a tiny bit and all h#ll breaks loose. I blame the computer equipment! For me anything remotely stressful sends me into sympathetic overdrive and dealing with computer equipment is among the top of the list. That would set me back several days too so I am afraid that you are not alone. My neurologist said to me this week “my, your ANS is extremely sensitive” when describing things that help/hurt. I think for some of us that is unfortunately true. This is the place to vent so vent away! That in itself is helpful especially to people that actually understand. No matter how much we are loved no one else really gets it unless they live it.

On the advice of my cardiologist I just bought a device called HeartMath Inner Balance  https://www.heartmath.com/ that tracks heart rate variability through breathing. It’s pretty cool and remarkably relaxing. It helps by showing how to breathe and tracking HRV. I haven’t tried it under duress yet but will let you know if it helps. Might be worth a look? 

Take care and rest. You will get over this again and put the monster back under the bed . Hugs to you.

[HCD77]

@Pistol I am so sorry this happened to you. Please take care and rest. I hope you get better soon. You help so many on this forum by sharing your knowledge , experiences and your positive attitude is always an inspiration. 

[Pistol]

@p8d, @Lisa C - thank you!!! I appreciate your kind words - and i WILL be better soon!!! Best wishes! 😉

[Nin]

21 hours ago, Pistol said:

@p8d, @Lisa C -  be better soon!!! Best wishes! 😉

It's just ???? All the time. I'm always questioning why why why. Now I know we just don't have the answers most of the time....it is what it is. I tell myself "you just got to ride the storm" I just hate it when I know the storms coming. I try to stop things happening, but I also have get on with everyday life i.e cooking, cleaning. I was doing really good for about 2 weeks, cleaned the house and then felt rotten since. Acceptance really is hard to accept! But I suppose we got no choice. Keep going like you do!

[Pistol]

53 minutes ago, Nin said:

Acceptance really is hard to accept!

Yep, it is. that's why we don't want to do it. Accepting something makes us feel like it is the end of something, like giving up. But it really is NOT - it also means freedom. Freedom of being a victim. When we accept something we simply cannot change then we can start to live with it. It doesn't make it right or fair or better - just easier. Be well, @Nin!

[MomtoGiuliana]

 

So sorry you experienced this set back.  Setbacks are so frustrating and frightening.

That is such a good point not to burden ourselves further with questioning why--especially "what should I have done differently".  I agree that so much of the time the flare up or set back is not connected to anything we probably have control of.