Good Days and Bad

[stooshiecat]

I haven't had much experience with dysautonomia/POTS.  I've had symptoms that have been getting worse for about 6 months now and haven't had a symptom free day.  Yesterday felt a bit like a miracle.  I slept great the night before, I woke up without a headache, ate 3 meals without feeling sick, was able to think clearly all day and my heart rate didn't go above 105.  I did felt a little breathless when standing and got a bit of a headache at night but other than that I was like my old self.  I thought I had turned a corner.  Then I woke up this morning.  I felt like I had been hit by a bus!  I had a pounding headache, sore neck, was exhausted and hot and as soon as I stood up my heart rate shot up to 135.  I spent most of the day laying down and napping a little.  For the first time my heart rate spiked while laying down - every time I rolled over it went up between 110 - 120.  Basically I felt horrible.

I've had such a struggle today trying to accept the difference between what I want/have to do and what I can do.  I feel like I'm about 20 years older than I am and I'm fed up looking around and seeing the housework, etc I need to get done but just can't find the energy for.

What's a good and bad day like for you?  How do you come to terms with your limitations due to your illness?  Any tips, etc to manage POTS are welcome.

[katcanny]

Hey stooshiecat, I have been diagnosed for 10 months and they still haven't found meds that can get me right but it's a process from what I've read and heard so still trying to be positive! My good days are when I can go to work for 5 hours sitting most of the day and get home to be exhausted for the rest of the night and try and help my 10 year old son with his homework and make his lunch for the next day. My bad days are bad I usually end up staying in bed trying to get up for a walk around the house every hour but that's it, i haven't been out to eat meal in a restaurant for 10 months and I can't go out on my own and need a wheelchair for shopping centres or anywhere there is a lot of motion around me other days a walking stick helps me get around to help with my dizziness I try and hide how bad I am but some days I just end up in hospital and they look after me for the night! 

[BuffRockChick]

Before dx and tx, a bad day was bedbound except bathroom trips, and nausea prevented me from eating.  I'd lose weight fast.  A good day was maybe 80% functional, still average 4 hours in bed between 8 a.m. - 5 p.m. (I use time spent in bed during the day to track how functional I am / am not)

After dx/tx, I still get bad days if I'm not diligent about sodium/fluid intake.  Yesterday was one of those.  I was in bed 5.75 hours between 8 - 5. I was cognitively impaired, reduced emotional control, irritable, tachy when upright, fatigued, and generally just miserable.  A good day, I'm 100% functional.  I think?  I mean, I've never been functional before in my adult life so I'm not exactly sure.  I haven't been struggling with showering/bathing or household chores.  I don't know if I could keep a job, I'm just trying to catch up on a decade of not being able to take care of myself and responsibilities before I worry about working again.

[jvherenow]

My symptoms are all over the place...like I'm the ball in a pinball game. Mestinon seems to be helping but I'm not fully titrated yet. I'm wondering why more people aren't taking it? It's an acetylcholinesterase inhibitor (increases acetylcholine levels) at the neuromuscular junction...so like right at the veins that aren't sending the blood back to your heart.