Stuff and Exercises

[jeshyr]

I went to see a new cardiologist, courtesy of my Haematologist who pulled strings to get me in. I like her.

She prescribed new exercises - 1 minute standing still and then 5 minutes sitting with feet on floor (and if I can manage, without leaning back against anything) for every hour or so I am awake. Initial goal is 10 times per day, since I am awake very approximately 10 hours out of every 24.

[Edit: We later knocked this goal all the way down to 5 times per day, since it was impossible for me to keep up.]

It is TREMENDOUSLY hard! Which makes me crazy frustrated because WTF it sounds so teeny tiny when you describe it.


This stuff is based on NASA research about the effects of gravity deprivation such as one gets from being bedridden for a ton. There is research and a book called "Sitting Kills, Moving Heals" which is a very inappropriate name for my level of ability where sitting is the "moving" part. The research still applies though, and the author is an ex-NASA scientist so she knows of which she speaks.

The exercises are hard. They don't hurt but they do wear me out thoroughly to the point where I even had to cancel a dentist appointment and a doctor visit. New Cardio asked me to focus on them for 8 weeks pretty much to the exclusion of all else,w which is really really hard but do-able since it IS a new thing and I had pretty much thought I'd run out of actual New Things in treatment at this point. So I've put everything on hold for 8 weeks and we'll see how it goes. She said that even in the best case there wouldn't be expected to be even a sliver of improvement before 6-8 weeks, so I am trying to be patient.

So if I don't write, I'm busy doing that OK? Has anybody else had similar?

Cheers,
r

Comments

[acelightning]

which is harder for you - standing upright and still for one minute, or sitting upright and flat-footed for five minutes?

*hugs*

[jeshyr]

Huh, good question ... the standing is more exhausting in general, but the sitting makes my back more achy. The back is getting stronger though, a teeny bit at least, but there's nothing in stamina changing yet :/ Other than that, they're very apprximately equal.

[sqbr]

Interesting! Let us know how it works out!

[mathsnerd]

Woohoo, something new to try! I will cross all paws that it brings something. At the worst, it can't hurt and it'll get you used to sitting up again, so that's good. *hugs*

I do similar things, practising standing on one leg briefly and on my toes and such for physio to strengthen my muscles to help counterbalance my weak connective tissue. It's AMAZINGLY EXHAUSTING and I only do it for 30 seconds to 1 minute per stance. But my physio says it helps reduce sublux/luxations, so I do it.

Good luck!

[jesse_the_k]

That sounds like really hard exercises.

I hope you learn whether they're helpful, and you give yourself permission to be totally pooped out at first.

I'll be thinking of you when I struggle my compression hose on in the morning.

[foxfirefey]

A total coincidence--rydra_wong just posted a link to this essay in lifting_heavy_things that might speak to you: "The amount of discipline, time, and effort that a person has put into their physical training does not always show."

[jeshyr]

Thank you!

I do feel very frustrated about the whole process - being expected to put every other event in your life on hold for several months, with no notice, is a lot to ask. I wrote a very frustrated article about compliance/non-compliance for StareCase magazine with it, though!

[jeshyr]

*hugs* Yeah, it is really hard. Luckily persistance is my superpower but it's still really frustrating.

My awesome flatmate is being really supportive which helps a lot :)

[jeshyr]

I'm used to having daily PT exercises for my stupid EDSey muscles too, but this is suddenly eating 90% of every day's spoons which is a lot to ask!! Hopefully it helps though ...

[dragonsally]

Good luck with them all Rickyxx

[shehasathree]

eek, good luck!

[acelightning]

i'm not completely surprised that sitting is a little easier, and is producing more immediate results. but i asked because i know that your body is very, very different from most other people's bodies, and you might have reacted less predictably. (i know i'd much rather sit down than stand up, if given the choice... standing up for too long can make my back hurt. although that's just because my fat arse puts a strain on my lower back muscles.) and i'll let Manatee have the last word:

[jeshyr]

Manatees make everything better :)

[feyandstrange]

Sounds difficult and tiring indeed! I hope you can keep it up, and that it helps you! You are inspiring me to get my wobbly self in gear for physical therapy.