1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
Discuss the article on the Forums.

Rough Crash - HR Monitor be damned

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by SDSue, Jun 3, 2014.

  1. SDSue

    SDSue Southeast

    Messages:
    588
    Likes:
    1,281
    Florida
    @SOC How long did it take you to train yourself? I'm a few months in, yet still can't get the hang of it. On really good days I stay well below my estimated AT, on really bad crash days my HR climbs very rapidly and I can't do much of anything but hit the bed. And the remainder of days are somewhere in between, but I can't yet predict.

    Is this due to my POTS not being adequately treated? Or is this just par for the ME/CFS course?
     
  2. SOC

    SOC Senior Member

    Messages:
    5,369
    Likes:
    6,466
    USA
    If I had to guess, I'd say it likely is your POTS, but it's just a guess. I think it's a big help to get the OI under control. Are you checking your morning pulse pressure to see that you are staying sufficiently hydrated? If my morning pulse pressure is low, my day usually doesn't go well and I can't do what I do on my routine days. Fortunately, those days are very rare now because I'm very careful about staying on my OI protocol.

    I don't have all the variability now that we've done a lot of work on the viruses and got the OI under control. Early on I had many days where all I could do was stay in bed. If you're still in the early days of fighting pathogens, you may have to rest more than you are.

    It's possible you are still doing more than your body can handle routinely. What I can do, and what I can do routinely are two different beasts. For example, I can do a little shopping in a storefront shop without PEMing myself, but I can't do that every day.

    My self-training not to go over my AT took 3-6 months. Learning what I could do routinely took a lot longer. I started with practically nothing since I was bedbound, and started adding in necessary daily activities one or two at a time -- dressing, making an easy meal. I'd stay with that for a couple of weeks and if I didn't have a bad day, I'd add in another necessary activity, wait a couple weeks... you get the picture. Eventually I got a picture of what my routine day should look like. Then I could add irregular activities here and there, making sure none of them took me over my AT.

    My routine sometimes annoys my hubby because I can't afford to be flexible in many areas. For example, I've learned I can do one load of laundry a day a little at a time. If I try to do several loads in one day, then I can't do other things in my routine -- I've used too much energy I guess. I've learned that I can't reliably cook a meal at dinnertime, but I can reliably do it in parts earlier in the day and warm it up at dinner time. Sometimes, maybe even a lot of the time, I can cook at dinnertime, but I can't do it reliably, so I backed off to a way I can do it reliably. That way it's not a guessing game every day whether I'm going to be able to do this or that.

    If I keep my routine down to what I know I can do reliably, life goes smoothly and I have some extra resources to do extras when I feel up to it. If I try to do everything I can do every day, I eventually wear myself down and have bad days.
     
    Sushi, Mij, BadBadBear and 7 others like this.
  3. NK17

    NK17 Senior Member

    Messages:
    477
    Likes:
    1,086
    Amazing, clear, thoughtful and full of practical advice post @SOC.

    I'm in awe of your scientific discipline in facing the Beast aka ME.

    I'll have to print it and place it next to my bed.

    You're a mine of useful tips ;)
     
    Gingergrrl, SOC and SDSue like this.
  4. SDSue

    SDSue Southeast

    Messages:
    588
    Likes:
    1,281
    Florida
    @SOC Best "Summary of Pacing" Award goes to you :)

    I'm still trying to do too much when I have a "good" day. I need a babysitter lol. And I'd never thought to check pulse pressure in the am. I currently drink 24 ounces of water with a Nuun at bedtime and another of the same upon awakening, so I assume I have my fluids correct at those two times? (much more also throughout the day - it's work!!)

    Thanks.
     
    Valentijn, NK17 and SOC like this.
  5. alex3619

    alex3619 Senior Member

    Messages:
    7,725
    Likes:
    12,647
    Logan, Queensland, Australia
    A little anecdote about how long it takes someone with ME to learn things.

    I am replaying an old computer game I have played off and on for 8 years now (Gothic 3). There is a small herb that grows in isolation that is valuable. For many years I forget even the remote location of it. Then for years I knew the general area, but had to spend even twenty minutes looking for it. The last day or so my computer character ran right up to it, I knew the exact location. It only took 8 years.

    Its always good to be kind to yourself and remember that it takes time. We forget most of what we learn, but that doesn't stop us slowly working on it for as long as it takes.
     
    Gingergrrl, NK17, AndyPandy and 3 others like this.
  6. SOC

    SOC Senior Member

    Messages:
    5,369
    Likes:
    6,466
    USA
    Aw gee, thanks guys! :redface: It's nice to feel useful.

    Fortunately, scientific discipline comes easy for me -- years of training as a researcher. The emotional discipline, now that's another story. All too often I just don't want (insert whiny voice here) to do what it takes to scratch and scrabble for every extra little ounce of functionality. Then I remember that it's do what it takes or don't get better, and I REALLY don't want to not get better, or even get worse.:eek: So, what's worse -- doing what I have to or living "like this" (whatever that currently is) for the rest of my life. All of sudden it becomes easier to do what I have to. ;)

    @SDSue, I know what you mean about the babysitter. :D It takes an enormous amount of self discipline to NOT do the things I want to, but know my body can't handle. I sometimes wish there was a mom around to make me do what I'm supposed to so that I wouldn't have to think about it myself. :lol:
    24 ounces is about the same amount of fluid I drink bedtime and morning, but it wasn't doing me any good until I got up to the right Florinef dose. It doesn't do any good to drink it if your kidneys are just going to take too much of it out of your blood again.
     
    Last edited: Jul 30, 2014
  7. SDSue

    SDSue Southeast

    Messages:
    588
    Likes:
    1,281
    Florida
    @SOC I'm going to check with my nephrologist to see if we can't sneak in a little florinef now that I'm on midodrine. It's worth a shot!

    What's odd is that I don't get up in the night to use the restroom. You'd think with that amount of fluid, I would. Odd.
     
    Gingergrrl and SOC like this.
  8. SDSue

    SDSue Southeast

    Messages:
    588
    Likes:
    1,281
    Florida
    Good point, @alex3619. Learning takes exponentially longer than it did prior to illness. What previously took one pass can now take countless.

    I am currently trying to follow a TV series, but to do so means that I watch each episode 3 or 4 times before the new one comes on a week later. And even then…… lol. Let's just say I'm easily entertained these days.

    Learning comes with a special delight now. When I do remember something I'm surprised and feel accomplished, especially when I remember to celebrate what remains rather than grieve what is lost - and that, my friend, is a process!
     
    alex3619, NK17 and Valentijn like this.
  9. SDSue

    SDSue Southeast

    Messages:
    588
    Likes:
    1,281
    Florida
    Update: 2 days without my HR monitor (broken) and I crashed hard, with scary tachycardia and high BP along with the usual. Worst crash since using the monitor.

    I could feel that I was doing too much, but without the warning from the monitor, I kept going (because apparently I'm dim-witted when it comes to learning how to pace - see above lol)

    Turns out, the monitor truly is a useful tool for me and does help me regulate my pacing better…… and that's really encouraging to know.

    I may kiss the UPS man's feet when he arrives with my new monitor today. (sarcasm) :woot:
     
    Little Bluestem, SOC and Valentijn like this.
  10. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,716
    Likes:
    10,232
    Amersfoort, Netherlands
    Due to falling over after exceeding your limits? :D
     
    SDSue likes this.
  11. Mij

    Mij Senior Member

    Messages:
    721
    Likes:
    788
    @SOC I'm printing out your post about pacing yourself. I've got my own pacing routine tattoed in my brain but I want to show it to my sister when she comes to visit. She thinks I"m the only one who prepares my day or even thinks like this :p I get readfy at 8am to go to a hair appointment with her at 4pm She starts to laugh because it's just too bizarre for people to understand this this whole PEM thing.

    I've taken it up a notch though because I've made suggestion to her to pace herself. Perhaps it's just too ingrained in my brain at this point :rolleyes:
     

See more popular forum discussions.

Share This Page