Pushing The Envelope

[cordila]

I had a long and rough week filled with work and fun but on Saturday morning I started to feel the 'edge' of the envelope, that point where I knew if I did anything more, and I mean ANYTHING, I was going to crash. But my Saturday was just beginning and I still had commitments that took me through the end of the day. When I finally went to bed that night, I slept for 12 hours. Sunday was a wash. I couldn't get out of bed. And Sunday night I slept for another 12 hours. Does anyone else experience this? First, this feeling of knowing when you are at the 'edge'? And second, the crash experienced if you've gone too far?

[Ernie]

Hi,

Yes, I can't even work and do the houcleaaning without crashing.

[Lukkychrm42]

Oh yeah.

Back in June I was promised a large number of accommodations from the university. Some of them have happened or are in place, and the rest are *still* awaiting funding. One of the helps was to have someone run errands for me twice a week. When I asked about progress on funding a week or two ago, I reminded her that a 15-30 minute trip of errands for a "normal" person (grocery store a 3 minute walk for these "normal" people) takes me at least 90 minutes as well as an hour or more of recovering afterwards. They're still "trying to locate funding."

And that's just errands- not classes, schoolwork, and so forth.

Any time there's a schedule for the day, it's pretty much booked double-time, so an hour here plus an hour recovery, or when walking to school (5 minutes) allow 30. It's not as bad right now as it has been some times, but the mindset is still there, too.

I hope you recover soon!

[Dawg Tired]

Oh my, YES! Pushing will make things a lot worse - Like next Sunday I know I have church and one more event going on so I better plan to spend most of this week preparing for it - and i will still be in bed most of the week next week.

[pat57]

absolutely

[cordila]

Gosh it appears I'm not alone! Sort of a bitter/sweet reality. Do you have any tricks to help? Like extra water? Or something else? I find the biggest hurdle is in my mind. I somehow still think I'm OK and can handle it. Or I don't want to be 'sick' so I pretend I feel OK. Either way, the result is still the same: massive wipeout. I'll take any tips/tricks anyone cares to pass along.

[Eli6596]

Overdoing it and paying for it is one of my greatest challenges. I have to pace myself. I have to put my energy level on a budget. I know how much is too much, and do not overschedule myself. I limit my errands to a few on Sunday after lying in bed most of the day on Saturday, recovering from the workweek. If I absolutely cannot avoid an overdo of activity, I plan a day of vacation from work afterwards. I let nonessential things slide to allow energy for the more important things.

I have learned how to budget my energy the hard way with trial and lots of error. You have an advantage if you can feel yourself on the "edge" before you crash. I don't usually know for sure that I am going to crash until I crash. I do know what is too much activity for me though. I just have to resist the temptation to overdo if I feel "good".

Karyn

[ajw4790]

Yep, I am good at crashing! I am thinking of specializing!

The whole past week I paid for doing to much the week/weekend before... It was awful. I want to find a solution. So, far haven't... it is hard to keep up and function somewhat normally, because you pay for it later... Then, you get behind in work/chores, and then the best part wear yourself out again catching back up! Vicous cycle!!!

[Sunfish]

"crashing" has been part & parcel of my dysautonomia journey since the beginning (quite some years ago now). while i definitely have "crashes" that seem to come out of thin air, if/ when i push a crash of some degree is pretty much a certainty. there have a been a few times that i've gotten away with things, but those are the exceptions rather than the rule.

what constitutes pushing has been & continues to be very different at different times. years ago pushing might have meant trying to go out to dinner after work or not using my lunch break to lay down & rest (not necessarily to sleep but just to be flat). at times this past year it might have meant propping myself up in bed to brush my teeth.

but yep, "crashing" is & has been a well-utilized part of my vocabulary & that of my friends/ family (in relation to me). the crashes vary in degree/ severity and if i'm just a bit crashed/ on the edge of a crash & keep crashing i'll be guaranteed to crash even harder later on. and the harder i'm crashed the longer it takes me to come out of that crash. what's "good" for me now would have probably been considered a crash for me years ago so i can't wait for my baseline of years ago to return, but after years of learning, trial & error, etc i'm pretty good at reading my body & knowing my limits at a given time. this doesn't mean i have any idea what to expect for the next day or even hour, but in the moment i'm a pretty good judge.

in regard to if there are certain things to help, for me there has never been a way to avoid/ prevent a crash beyond not pushing in the first place. i don't consider this a viable option b/c without pushing & thus crashing to some degree i'd be a lot more limited than i already am. this doesn't mean i'm stupid about things (at least not usually), but i think it's about finding the balance...the fine line between pushing just enough but not too much. and to make it extra tricky that line tends to change a bit over time, from day to day, or even from moment to moment at times. chosing to push/ overdue with an expectation of crashing to some degree is part of my day to day reality (& obviously that of many others) but there are also many things that i can't do regardless of how much pushing/ crashing i'd be willing to put up with. but i digress.

other than planning (as best as possible) & acknowledging one's limits (without being afriad to challenge them) the only other thing that comes to mind is to make certain to maintain what you know you need to do to keep yourself at your highest level of functioning. obviously it isn't a guarantee, but if salt & water loading are part of your regimen than it's important to keep up with them. same with taking meds, getting sufficient sleep, etc. in short, if you skimp on any of these things while pushing &/or while crashed it's only going to make things worse.

with my ANS doc's okay, i've also had some short-acting meds that i could increase at times as needed (i.e. midodrine). this didn't prevent crashes but allowed me some ability to push a bit more at times for something particularly important (still knowing i'd crash after), helped me to safely make it through crashes (i'd still feel like crud but could get to the bathroom without fainting), &/ or helped with crashes due to fighting a bug. so this MIGHT be something that could be considered but ONLY via collaboration with a doc. and again...it doesn't fix the issue, just serves as an additional tool in dealing with it (at times).

all in all though i think crashes - to some degree - are part of the territory....

hope this helps,

melissa

[Rachel]

Yep, I always crash when I push things "too far." But "too far" can change! Too far used to be a mile long hike. Now too far can be walking from a handicap spot into a store. But on a "good" day, a walk from a handicap spot into a store with a scooter waiting might be okay. "Too far" changes! Also, sometimes crashes happen just because and there is no reason. Other times I might borrow "spoons" from the next day, and just plan to crash later.

Crashes are just part of life with dysautonomia. I've found that a good med combo, fluid, salt, and stockings help to keep the ups and downs to a minimum, but they're still always there. I can usually tell when a crash is coming, but sometimes they sneak up on me. I may be running off of adrenalin and not know it, and then soon...crash!

Rachel

[Kitsakatsa]

Hello Kitty. That is the life I have after I do too much in a week. Its just me dozing like a cat with the cat.

So, I'm trying a little experiment and in the 1 experience I've had it worked really well. So, I'm pretending that my 1 experience is really really scientific and that makes me happy. I'm in a biomedical core class and we are studying the nervous system. So, in our lecture I learned that how hypertonic solution (sodium) helps the brain function. The nerves function in a series of polarity (flipping) between positive and negative environments and sodium in, potassium out etc. The higher sodium content in the blood makes the system just flip faster.

So, I wanted to figure out how to prevent the crashes (like someone else said). I always take in tons of sodium when I'm sick by infusion, but forget about sodium when I feel well. I wanted to go out to a resort club on Halloween night with my friends, so I took in tons of sodium the day of and the day before. I thought if I kept the sodium high in my blood while I was overextending myself, then the nerve transmission speed would keep flipping faster and the body would handle the capacity of the activity in an efficient way instead of handling it in the POTS way of flattening me for 2 days.

The interesting thing was, the club was hot- which would be a drawback- and I forgot my med hose (maybe on purpose). The next day, when I would normally be sick and miserable, I felt tired but not in a POTS way necessarily. My nausea was at a minimum and the only thing was extremely sore muscles. I had actually bounced around enough to have sore muscles for a week- but not an increase in POTS symptoms.

So, maybe this means something, and maybe it doesn't. But, I've never had an experience like this since having POTS and I'm definately going to salt load again when I want to do something - like clean the house etc. From what I can remember, my sodium load was around 6,000-7,000 mg those two days (lots of pickles, commercial soup and turkey jerky). This might not be safe for everyone though. It was a pretty compelling experience.

[flop]

Hi Kitsakatsa,

I take sodium tablets daily in similar amounts to what you took for your salt loading. I take 5 or 10x 600mg tablets daily.

Salt loading is often recommended for a non-pharmacological treatment for POTS / OI. Have you considered upping your salt intake on a regular basis to see if it improves your symptoms overall?

Flop

[Suzanne]

Hi I too have battled with crashing since I was first diagnosed 3 years ago. I just could not stop my natural instincts to push myself, usually with everything. I just kept hoping that this diagnosis would diminish, so I kept overdoing it and of course I would crash. Once crashed I would give myself a hard time for not being able to keep up. Then I would flip it and be cranky that I had crashed again. My crashes were severe, I would ache incredibly, even my eyelids! I would have to spend up to 5 days recuperating. Eventually, I succumbed and realised that this **** illness was here to stay. It has taken me 18 months to learn to pace myself and to accept that some crashes will come, despite my best efforts. I used to be embarrassed if I could not attend every function, school or work or friends event. Now I accept that I will be able to do some, not all. What has really helped is to look at my load for the day - and plan to do only 50%. Also, my stubborn streak has not gone and I give myself targets to achieve as I don't want to become unfit etc. I will walk to the end of my street on a bad day and give myself a pat on the back. The fact that I used to go for a 20 min run I have to let go of.

My aim is to walk 3 times a week for 20 minutes. I was getting close, but have just had a hysterectomy, so back to square one again. That is ok.

Really hard issue to deal with. Be kind to yourself, let others help (that's been a big one!) and really think hard before committing to anything.

Suzanne

[Guest tearose]

Like others, I too push and eventually, if not really careful, will crash.

The hard part is, sometimes we can push and do okay. Other times we think we can push just a little more and then we are back in a potshole.

There is no predictable pattern. Only little warning signs and they can be missed or ignored.

I too do a lot of planning ahead and if I have a big event, I try to ask myself if the risk of the potential crash is worth the push. I try to make as many adjustments and accommodations and then just try to live as much of life as I can. I try to get it right but sometimes, even with my best effort, I am not able to manage. I also think as years pass, the body is less resilient and this makes figuring the right formula harder too.

tearose

[cordila]

Suzanne, I so get the comparison of 20 min run to trying to be happy if you can do a 3 minute end-of-the-block walk. I have such a hard time wrapping my mind around the state of my body...and for me it's been 3 solid years of POTS symptoms! You'd think I'd get the message. Kits, I also am going to try salt-loading. You know, I've always heard it's good for us but, frankly, haven't felt much different if I do (or don't) salt load. So I left it out of my regime. I think, now that I'm doing more, I'm going to add it back in and see if it makes a difference. (Thank you for the tip and personal story...and congrats for making it through the party! Doesn't that feel great?!)