how do you know when to start increasing activity after severe crash

[sueami]

i worry about staying bedbound after two solid weeks of getting up only to go to the bathroom. i am starting to feel more energy but i know im in a mito crash and have to be very wary of increasing my activity levels.

how have you successfully raised your activity levels after a crash that involves tachycardia? (mine is improving but is still there. i can stay i the 80s sitting up if i feel well or i can spike i to the 90s if i am not doing so well.)

i feel like for my health i should start trying to move a bitnmore and be upright a bit more but don't trust myself or my body.

any advice would be appreciated.

 

[minkeygirl]

You don't know. The rule I always heard was
Do 50% of what you think you can.

If I remember correctly you've had 2 crashes from doing too much. So what you were doing was not working so maybe try something else

I check my BP once a week maybe. I don't use that as a basis for what I do. I go by how i feel. I have tachycardia all the time which I manage mostly with potassium.

 

[Seven7]

If you want to use the heart rate method, This is the safest and easier way, if your HR goes over the AT then is too much. If you wake up with 8% over yesterday RHR you need to cut back (hydrating properly so the rise is not due to dehydration). Note: even though I do not go over AT my time vertical is 5min. So about min4 or so the breathing start getting harder, I know is time to stop even my HR is still under AT.

When I don't wear HRM: if I have to force me then I am not ready. Example I need to go to the bathroom and I am oh God I have to goooooo, then I know I am not ready for more. When I stand without thinking about it then I know I can do more, when I start losing my breathing pattern I know is too much. I am very in tune with breathing it will tell what is ok and what is not.

those are the 2 options I use. I am no doctor. The first one was my doctor that gave me that since I did the exercise test but she told me to assume calculated AT (220-age)*50% then as you do more raise it to 55% .. Read on the resting HR method.

 

[Esther12]

don't trust myself or my body.

For me, things work out best when I do trust myself, and stay in the moment when thinking about what I want to do. If I feel like I want to rest up, then do so, and try not to get caught too up in doing something interesting/fun/that I need to get done.

Also, I find that trying to follow different rules and programmes and theories just makes life a needless chore. Relaxing about that stuff and trusting yourself is less of an effort imo.

Good luck playing about and finding what's best for you.

 

[sueami]

thank you all. great perspectives. that hr formula puts me in bed at 85 which means i shouldnt be up at all most days. i do want to trust my body and i realize that what i mean is i dont trust muself to read/notice my body's signals, and the key to this healing journey is going to be learning how to do that, so thank you for that, esther.

 

[taniaaust1]

Its tricky as if you have POTS, being in bed too much can make that aspect worst (so put your heart rate up more).

I myself go by how I feel

i am starting to feel more energy but i know im in a mito crash and have to be very wary of increasing my activity levels.

If you are starting to feel more energy it's a good sign that you may be able to do a little more, its just a matter of working out "how much more".. To do this you could "very slightly" increase what you do, test the waters out gently. Add into your day a small activity you currently arent doing. For a bedridden person, it may be as small as brushing their teeth daily. Try not to loose that feeling of the increased energy.

Note, this test cant be done in one day.. I myself find I need to test at a new activity level for 2-3 weeks to know for sure Im going to be stable with that increase of activity.

If you do that gently enough you will notice how much more activity you can do which is at a point in which you may feel a very slight decline in your energy (not the point of a crash). Then make sure you do less then that amount in future.

Also paid heed of your past recent history to know how much not to do.

Another thing, try to learn what your "warning signs" are. I think most of us get them, something one can look out for which warns when you need to stop .. eg for myself, one of mine is my throat starts to get very slightly sore. That means i need to downgrade my activity to less then I usually do.

 

[taniaaust1]

When I don't wear HRM: if I have to force me then I am not ready. Example I need to go to the bathroom and I am oh God I have to goooooo, then I know I am not ready for more. When I stand without thinking about it then I know I can do more,

that made me smile as I do that too and the toilet thing is definately one of those signs when one needs to cut back on activity.

"oh god I need to go, I dont want to have to go" instead of it being just a thoughtless act which happens when I have an "okay" level of energy.

Maybe we should name it the "bathroom method" of working out activity levels.

 

[SOC]

thank you all. great perspectives. that hr formula puts me in bed at 85 which means i shouldnt be up at all most days. i do want to trust my body and i realize that what i mean is i dont trust muself to read/notice my body's signals, and the key to this healing journey is going to be learning how to do that, so thank you for that, esther.

Main point:
My specialist advises using HR and BP as indicators for when I'm starting to stabilize after a PEM episode. Keeping a daily record of first morning (before getting out of bed) BP and HR gives you a baseline (your own "normal"). From there, you can judge progress in a PEM episode by comparing current BP and HR to baseline -- when you're back to baseline you can resume your previous "normal" activities. Otherwise, stick with lots of rest and extra fluids.

Extra babble not entirely necessary to the main point:
Since I'm currently in a PEM episode and had gotten careless about taking BP and HR every morning (because it had been 6 months since I'd PEMed myself), I no longer have the baseline data that used to help me understand when I could safely increase my activity. I'm regretting that now. I'm having to go by how I feel, which is not a very good measure compared to BP and HR data. I always think I "feel better" before my body is really ready to go back to normal activities. We all want to think we can go by feel, but it's far too easy to want to do more, or to notice that we feel better than we were in the worst part of episode -- without understanding that feeling better than the worst stage is not sufficient criteria when body systems are malfunctioning.

IMO, most of us are still in push-crash cycles in which we are in a constant state of (at least partial) PEM because we go by how we "feel" which has a lot of ambiguity, compared to using the data which has the benefit of being objective.

I didn't achieve long periods where I was not highly symptomatic until I was willing to take the data and manage my activity by it. That meant doing much, much, much less than I wanted to. I had to learn what my body's true limits were, not what I wanted them to be. It's a hard lesson, but not feeling like crap 100% of the time was a valuable reward.

 

[SDSue]

thank you all. great perspectives. that hr formula puts me in bed at 85 which means i shouldnt be up at all most days. i do want to trust my body and i realize that what i mean is i dont trust muself to read/notice my body's signals, and the key to this healing journey is going to be learning how to do that, so thank you for that, esther.

I'm sorry to hear you're crashed in bed. Been there, done that, and feel like I'm one false move away from being there again. You summed it up well when you said you want to trust your body. It's sooooo hard to do when emotional or cognitive energy takes as big a toll as physical work.

Another thing, try to learn what your "warning signs" are. I think most of us get them, something one can look out for which warns when you need to stop .. eg for myself, one of mine is my throat starts to get very slightly sore. That means i need to downgrade my activity to less then I usually do.

My surefire signal is a buzzing in my brain. Once that hits I've got to stop whatever I'm doing or I'm in for a crash. The trick is to stop activity before I buzz, but apparently I'm still too stubborn to do that. That's where the HR monitor comes in. I've gone thru 3 in less than a year thus have been without one for several months or so…… and come to think of it, I'm not doing as well the past few months. Coincidence?

 

[sueami]

crashed myself again last night by snuggling and talki g too long with my daughter.

feeling so hopeless right now. how do you dealwith panic attacks while in a crash and how did you find the acceptance that you need to deal with this illness. a big part of my panic is that i do not want to face that i am this sick and i am afraid i wjill never recover. struggling with the acceptance part of the puzzle.

ty all for everything youve written so far. its both helping and scaring me as i try to face what my current reality is.

 

[Gingergrrl]

Sue Ami, are you certain they are panic attacks vs. IST or POTS? I am wondering if it is autonomic dysfunction similar to what I experience? Without a beta blocker my HR was going into the 170's and was debilitating.

 

[sueami]

hr was hanging ipn the low 90s for me. usually in the 70s .


what is killing me is the inability to fall asleep. i kept being jerked awake every time i dozed off. hr didnt seem hugely elevated when i felt pulse. i just have this fearful surge as im about to fall asleep and falling asleep feels like being dragged under by a huge wave or something.

dont know if i am going to be able to sleep tonight (got maybe 2hrs last nightfrom 6am to 8 am) . am thinking about trying a small amt of valium if i cant. would thatbe a bad idea i wonder? i have human valium for the neurotic dog. i have nvr tried to take it before but i usually sleep quite well. this new crash symptom is hell.

 

[Seven7]

@sueami In my case that feeling is imflamation (I know because when it was really bad coincide with my cytokine tests and was really bad results, all imflamatory citokines really high) so now I now the feeling. Like busy or buzzy in head. best I can explain it.

Anyways I go in antinflamatories until feeling goes away and helps. I was told to to use Aleve (not advil).

I had trouble staying sleep so I used a stage 4 inducer: trazadone for years. Coming off it now (1 month off), just use it a few times when veryyy tired but moving towards no

 

[sueami]

tha k u for the anti inflamm recc! ive been wwondering which might be best.

im feeling better and reading thru my journal. im questioning whether im i a crash at all or just suffering horribly from a bad nights sleep and anxious thinking about crashing.

i took an insanely hi dose of adb12 yesterday b/c i realized i had been skipping it and read that it supported mitos. i took two 8mg tabs subli gual and two squrts of a xdermal oil. i could have handled that pre crash. yet another cognitive error i am making that i can tak or do what i used to.

also i am thinking my hi dose d ribose or coq could be causing the startle waking which i see has been going on to a lesser degree for some days and more or less as long as i have been taking the kito supps.

gah. i change tooo muchh at once in ky desperation to be well.

 

[sueami]

for those of you who are or have been bedbound, what can you pass the day with that doesnt crash you? i have been trying to do as little mentally as possible. saving energies for talking with dh and kids or reading here or on FB but i am really stating to go crazy with boredom. not sure if i could watch a shrrt tv show or read parts of a book maybe.

 

[SOC]

for those of you who are or have been bedbound, what can you pass the day with that doesnt crash you? i have been trying to do as little mentally as possible. saving energies for talking with dh and kids or reading here or on FB but i am really stating to go crazy with boredom. not sure if i could watch a shrrt tv show or read parts of a book maybe.

When I was bedbound I listened to audiobooks, watched birds through the window, and tried to sleep as much as possible. When I was a bit better, I crocheted a lot -- mostly things that didn't require much concentration. Everyone I knew had a handmade hat and scarf, lol!

Frankly, it was hideously boring most of the time, but being bored for months was better than staying bedbound for years, so I toughed it out. I think listening to Terry Pratchett books saved my sanity during that period.

 

[CantThink]

If I'm well enough to do something that involves light/sound I'll watch something that does not require much thought (light hearted funny stuff or property shows of people who want to move house).

If I can't sleep at night I'll listen to talk radio as it takes my mind off my pain and stops me feeling lonely.

Audio books are good if you can listen - less strain than reading for me. You can download them.

It depends what stage you're at. If I'm at my worst then I just lie there in the dark, and my little dog lies next to me for company.

When I'm well enough to sit up and start doing a little more (the before getting up stage), I'll colour in a colouring book (a friend gave me an adult one), or doodle or draw a little sketch or something for 5 minutes or so.

I have knitted a bit in bed before when I'm at the sitting up in bed stage, although it can exacerbate pain and I have to limit myself timewise as it does use the energy up quite quickly. I know some PWME who are able to do short bursts in the day of crafting... like making a card.

I also read a little bit or try to do a bit of a puzzle or simple crossword.

I think the thing that is crucial is to do less than more... Don't wait til you feel worse before stopping.

 

[sueami]

this worked well for me. ty so v v much for suggesting it. took 2 aleve to reduce i flammation e uf but slept well with one brief waking.
getting some glucosamine as it is anti inflamm and hip's top recc for curing geeraized anxiety. feeling hopeful today!

@sueami In my case that feeling is imflamation (I know because when it was really bad coincide with my cytokine tests and was really bad results, all imflamatory citokines really high) so now I now the feeling. Like busy or buzzy in head. best I can explain it.

Anyways I go in antinflamatories until feeling goes away and helps. I was told to to use Aleve (not advil).

I had trouble staying sleep so I used a stage 4 inducer: trazadone for years. Coming off it now (1 month off), just use it a few times when veryyy tired but moving towards no

 

[justy]

I think adult colouring books are a great idea! I spent a lot of last summer in bed colouring in Mandalas and my daughter can do it with me and we don't have to talk much - just be together.

Hope you feel better soon. I am also struggling with being worse the past 8 monhts and cant get my head round how it happened.

 

[sueami]

I just realized i took a monolaurin the afternoon before this neuroinflammatio crash. i have a dry cough now that i thought was either mito/heart weakness or reactivatikn of my initial viral symptoms from 5 yrs ago. could an antiviral trigger neuroinflammation? i thouht they were supposed to relieve it, at least after a whole.