The Good, The Bad, And The Ugly......

[badhbt]

I cannot understand how I can have a good day then turn around and have a bad day. I haven't changed anything and my vital signs are pretty much the same.

Anyone have any insight?? Anyone have any luck turning around a bad day?

Hope everyone is having a GOOD day!

[bebe127]

Badhbt,

I feel for you as I go through this daily it seems and can never really get a handle on it, wish I had some advice for you.

Beginning this week I've basically gone from being homebound to having to be out of the house 4 out of the 5 days of the week. I recently just started driving again, after 3 years. Over the last three days I've schooled my kids, done laundry, fixed up dinner, household chores, taken dd to dr., volunteering, and college course, taken ds to dentist, and ran errands. Might not sound like much, but to me; it's like running a marathon without training first!! The rest of the week looks like so: laundry, house chores, schooling kids, take dd back to dr. then to breakfast, taking kids to co-op classes Friday and teaching a one-hour poetry class at co-op as well.

Monday and Tuesday I was on top of the world. Even hubby noticed and said he was so proud and pleased with me. I felt so good, I nearly forgot I was sick. I really can't remember a time that I have felt this good. Then, I was awakened at 5am this morning with what seemed like an adrenaline rush. I awoke feeling really poopy and feeling shaky all over on the inside, like electricity was running through me. I checked my BP and HR and everything seemed fine. I wasn't sweating, no difference in chest pain or heartbeats. I was ready twice to call my hubby home from work, but refrained. It was really weird. I lay in bed trying to relax until I finally took a Xanax to try to relax. Then I felt really sleepy and actually fell asleep with book in hand only to wake up again at 8:30am. I was feeling a bit better and was trying not to think of all the things I had to do today.

Good news is, is that I pushed through, got the things done that needed to be done and now am trying to relax. Like I said, I go through the whole "good day" "bad day" thing and it can be so frustrating especially not knowing what the triggers might be as nothing in my life has really changed (other than schedule), but why did I feel so good Monday and Tuesday??? Such an unbelieveably frustrating way to live. But live we must!!

I sure hope you get to feeling better and are encouraged that there are many in your boat, which is apparently our boat now. Sadly, I'm sure there will be many more passengers, and we must remember that many hands make light work

Feel better!!

Bebe

[badhbt]

Bebe,

That is huge! Going from not driving for 3 years to driving....awesome. Thanks for sharing your story. I think it shows that there is hope and you need to take advantage of the good days!

I just wish I could figure out the bad days and the cause, but it is nice to know I am not the only one in the boat.

Take care,

Heather

[lifeless]

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[Joann]

Heather,

Totally understand the frustration of good days/bad days. I have times I feel really good and think maybe I am getting better and then for no reason, I feel terrible again.

Sometimes there are days that have both good and bad times in them.

Although, it is totally frustrating to never know what I will feel. I so totally am glad I am having "some" better days, I never want to get back to the time when I had no good moments.

I have discovered that there are times I cannot push through, but there are other times where I have to try and push through. When I am down for too long, it can make symtpoms so much worse. It's learning what is enough and what is too much.

The joys of dyautonomia!

[HopeSprings]

Yup, day to day, even hour to hour symptoms will improve or worsen with no rhyme or reason. I haven't found a way to control any of this and I haven't been able to make sense of it either. I try to remind myself when things are really bad that they will improve again and to just hang on until then. It's not easy. Hope today is a "better" day for you.

[badhbt]

I can't tell you how comforting it is to know you are not alone. This is a complicated illness that can really make you feel alone. Thank you for your input and I hope they figure out what is going on and cure us all!

We deserve it

[Altruism]

+1, Heather (hug)

However, I never have good days. I have bad days and terrible days. Terrible days are bad days + more symptoms that change on an hourly basis. I don't know how you guys push through and what you mean by that, but I admire you for doing it.

I'm housebound and I really want to go out for a short walk. But I'm tired, dizzy, lightheaded and tachy. How do I push through? I walk and walk and get dizzier and dizzier.. Then what? Push through the presyncope feeling and pass out? Or sit and wait to feel better and keep walking?

I am trying to understand what pushing through means. This might give us all more good days.

I love the " have a good day" with ever since I got sick. It has a totally new level of meaningfulness now.

[Joann]

Altruism,

Some days I can't push thru. I have high bp and on some days if I try to push thru it will just continue to climb and the pain involved will tell me, if I continue I will end up in hospital. However, other days, I may feel terrible and have high bp, but if I get up and can walk slowly, it sometimes does get a little better.

Can't tell you why this is, and can't say it is the same for anyone else. Everyone is so different. I have some things I just cannot do no matter what.

I saw my cardiologist today and I think she summed it up quite well, she said "POTS *****!". That was her professional opinion.

[bebe127]

Altruism,

Some days I can't push thru. I have high bp and on some days if I try to push thru it will just continue to climb and the pain involved will tell me, if I continue I will end up in hospital. However, other days, I may feel terrible and have high bp, but if I get up and can walk slowly, it sometimes does get a little better.

Can't tell you why this is, and can't say it is the same for anyone else. Everyone is so different. I have some things I just cannot do no matter what.

I saw my cardiologist today and I think she summed it up quite well, she said "POTS *****!". That was her professional opinion.

Altruism,

I so agree with Joann. I am exactly the same, some days I can push through and others I cannot. Everyone is different and reacts and responds differently.

For me personally, I had to "push through" this week and will need to for the next few months.

An example of "pushing through" for me was yesterday (really the whole week, but I'll just talk about yesterday). I'll try to give the short version (I tend to ramble on and on!) I awoke at 7:00am and began my morning routine. I usually take my meds at 8:30am but ended up taking them a bit early (and doubled up on the anxiety meds) as I could feel anxiety creeping in. I had to get ready to leave my house at around 9:30am with the kids to go to homeschool co-op classes. I also teach a poetry class for an hour. This was our first Friday back since the holiday. I guess just knowing I'd have to leave the house, drive and teach were all getting to me. I was jittery all over, could barely do my makeup and my heart rate was up in the 140's. We got to co-op and my heart rate was still high. The whole drive there (about 20-30 minutes depending on traffic) I was praying..."Lord, please just get us there safely, don't let me hurl, give me peace, slow my heart down, will You please tell the crickets in my head to stop their incessant chirping" and the like. Thankfully, I didn't go into a full blown panic attack. The meds only seemed to be having a little effect on me. I kept telling myself that if anything happens, my kids (teens) can dial 911, if something happens at co-op there is a firefighter/EMT who is there and will know what to do (coincidentally, he has a daughter that suffers from dysautonomia), my husband is only a phone call away. Anywho, I made it to class, with my heart ready to jump right out of my chest, felt dizzy and ready to hurl. I taught my poetry class, which among other things involves being on my feet for an hour. By the time class was over, my heart rate had decreased a bit, but I still felt yucky. After class, I went to go sit, relax and wait for my kids to get out of their third class. I couldn't wait to get home. But, the real great thing...was that I had done it! I didn't really have a choice.

I must tell you that I in no way intend to imply that my symptoms are better or worse than yours or anyone else's. I don't pass out, but I do have the myriad of crappy symptoms that go along with POTS. I can tell you that I did choose a certain reaction and response to those symptoms yesterday, and I chose to "push through" by praying and using positive self talk to get me through the day. Some might think that yesterday was "no big deal", but to me, it was huge! I have only recently (in the last year) begun to drive again. I have severe anxiety and some days I can't even make it out of bed, let alone even think of make-up. But...yesterday I did it (with the help of answered prayer) and who knows what tomorrow will bring or next week? We all have to live one day at a time, and sometimes it is one second at a time.

Be encouraged! I don't know how long you've been sick, but it took me a good 2 years to find my "new normal" not that I wanted to find it; I want my "old normal" back, but I needed to find it and hopefully you can find yours.

Here's to hoping that you have good days ahead!!

Blessings to you!