There's so much that I want to say. That I feel. That I just can't share.
That I just don't feel right sharing.
That I just don't feel right sharing.
My depression and fear from POTS has really flared this time. Even though there are so many sweet people who have checked in on me the last day or two, I just want to hide away completely. I feel so completely useless...to my family, to my friends and to society.
Today, I feel like a failure. I've spent the last (almost) week laid up with a terrible soul-sucking migraine and today I decided I was going to go out. I took a long-ish walk with my oldest dog, and played outside with my youngest. It was a perfect weather day. I somehow got volunteered to go get dinner for everyone, and as I'm driving I start to feel really sick. I've felt sick ever since; though I eventually managed to eat dinner. (This sometimes happens to me when I ride in the car because of the pressure changes.)
It's heartbreaking. Even on the most perfect of days weather-wise (which is a big factor for me), I still am incapable of going out and doing things. It's upsetting.
I was talking to a friend last night, and I was explaining the biggest problem with POTS; which is blood pressure regulation. (That's why I feel so awful all of the time.) BP regulation is something that everyone else's body does automatically...mine doesn't; which is why I have 'autonomic dysfunction.' On any given day, my heart rate ranges from 50bpm to 160+bpm. I'll have BPs fluctuating from the 70/30s to the 110/60s.
So many things affect it: movement, humidity, temperature, exercise, heat, etc. The list goes on and on. I almost pass out walking out into humidity from the a/c. Taking a hot shower is a marathon. Just standing up has me seeing stars, let alone any other movement. Drinking a very hot drink, or something iced can set my POTS off so I do neither.
You know that air pressure sound when you drive with the windows cracked in your car? That sets off my POTS too. I'm sure that's probably what happened to be today. I went out and the movements and the driving set off a chain reaction.
So far it's been impossible to regulate. I take in a lot of salt, take meds for salt retention, take vasoconstrictors, and am going to get compression stockings. I have specified diets and do what I can, when I can.
I'm so incredibly tired of having to work so hard just to be normal.
Not to mention that it's still not working, and I still feel awful.
I know why they say this feels like congestive heart failure. (I haven't had it, but I can understand the comparison.) I can also understand why all research shows that POTS patients use three times as much energy as a normal person, just to do 'normal' things.
I hate that I'm back to square one with trying to find doctors and answers.
I wish I was understood more because I don't like being so alone and I feel so guilty talking to other people about it. (A friend pointed out that if I showed how I really felt more often, this might be better...but I'm not so sure that's the case with my family.)
I'm sure I would feel a little bit better if I wasn't so afraid to sleep...but the nightmares are so terrifying and realistic, I just can't. I'm scared.
I'm trying so hard to fight the urge to just pack it in entirely.
By the way, thank you to the kind people who have been re-routed here from you-know-who's blog. (I don't know if she'd want me to share, so I won't.) I appreciate you taking the time to stop in as a favor to her. She's lucky to have friends like you.
Hey sweetie,
ReplyDeleteI'm a bit at "square-one" myself but in a different way. But the truth is we are NEVER really at square one. We are not the same people we were then. We know so much more now. We know what to demand from doctors, how to read them better, and have researched our conditions so we can speak with authority. We have a better idea of what we need and what we will put up with. Are we "there" yet? To where we ache to be? No, but we are not at "start" either.
At the same time, I do know how you are feeling. Like you're being swallowed into a black goopey pit you can't get out of and you just sink under the facts you see. The hopelessness of so many unanswered questions that you've tried desperately to get answers for.
All I can say, Erika, is I am praying for you and sending you hugs. You're not alone. I'm more than little black letters on a white background. I'm a person. And while you can't see me (invisible supermodel that I am lol) and you can't come over for tea, and it's hard because sometimes we all don't seem as "real," I do cry real tears with the best of them ;), I lift my face to feel the warmth of the same sun you feel, see the same moon at night, wish on the same stars since I still can't find constellations well and have to do something lol, and while I know it's not the same as feeling a real life hug from a friend.... we're here to help strengthen your spirit. And you can't hug that in RL anyway. :) Remember, the spirit of a man sustaineth his infirmities, but a broken spirit who can bear? Part of the reason we're here in life is to help each other bear one another's burdens.
So, bare away. :) Don't hold back, say what needs to be said wherever it is that you can say it. I'll stop with the epic post now. :)
hugs,
your RL friend
Thank you (((RL friend)))
ReplyDeleteHelping me is something you do exceptionally well- I'm grateful to know you
right back atcha, dear ;)
ReplyDelete