- cross-posted to:
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- cross-posted to:
- [email protected]
cross-posted from: https://lemmy.world/post/19000344
There has to be another way
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I have a couple of chronic conditions (Ehler Danlos syndrome and mast cell activation syndrome, woooo) and see pushback against meditation and exercise from other EDS/MCAS people so, SO much, but they work. Really well.
Some do have major issues starting exercise. No one expects someone with severe hip instability to do leg presses or a patient with CFS to pick up jogging, but there’s almost always something you can do. My arms and shoulders are a mess, so I started upper body exercises (tricep extensions, curls, etc) with a 6 oz can of tomato paste. Four years later, I’m up to five pounds! You just have to use some problem solving skills and do what you can, when you can.
Undiagnosed (aside from TTT at home) EDS/POTS here (mild), I biked enough to notice a difference but I didn’t hit the point where it aligned with this post (maybe because I don’t really sweat, stress on my body changes the effect?). Even with inactivity, muscle loss is not an issue for me.
Though the biggest issue with cycling for me is that I don’t really have (m)any destinations, distance makes most trips not viable for what they are (particularly factoring in return trip) or add complication when it comes to hours or weather. Daylight savings ending combined with shorter days ruined it for me, too.
If I may offer some 100% not a doctor or medical advice, resistance training is great for EDS in my experience and that of others. The only thing to be aware of is it WILL hurt for awhile. I go to a gym that has a full complement of exercise machines (free weights + hypermobility = easier to injure) and started lower body exercises on the lowest weight, a whopping 10 pounds. I’m gradually working my way up but am taking it really slow. I’ll eventually move to light to medium weight free weight exercises, but not for some time. The hypermobility in my knees and hips has significantly decreased and I’ve regained a fair amount of flexibility (hypermobile folks tend to get tight muscles as we age since we use them to stabilize our joints).
Me when I noticed how bad my anxiety was getting so I cut out caffeine and alcohol for a week and it all went away: “… fuck”
Never had that particular issue, but I think that’s only because of the ADHD.
Now that i think of it, every ADHD person I’ve ever met have been the chillest people ever. Maybe we are resistant to anxiety? I’d love to see some research about that
Just wait till you hear about the ‘eating healthy’ bullshit.
What’s next? 8 hours sleep?
6 or 10, inbetween is impossible.
4 or 14
Hey don’t start with that now, at my age it’s been decades since I could sleep that long.
I know! I love pasta too much to give it up
Just stop grating an entire block of parm over it and you’ll be fine
My fiancée thinks it’s because I’ll eat the entire box in one sitting
Portion control can be more important than what you’re eating. As long as you get all your vitamins, minerals, carbs, and protein. Unfortunately the US is anathema to portion control.
In the United States, portion control means not spilling your portion as you fill up your entire plate.
It sucks being raised to both clean your plate and having honking big portions. I try to eat less and my body starts shrieking it’s starving and like, no you stupid meat husk! You are not!!
Or just go running twice a week for 30 mins.
Get 10,000 steps a day and you will feel even better
Get 100,000steps a day and you will feel some real shit
1,000,000 steps a day and you’ll become a minor deity in a Greek play
On average, that would be more than eleven steps per second.
That’s why you gotta be a deity to do it duh
I really want to get back to daily exercise. I felt so much better and stronger, and the habit is so fragile
My hack is orthorexia
There are evidence based tips from behavioural psychology you can use to help. Some examples…
Will-power is a finite resource in the day, so if exercise is left to the end of the day then it is easier to leave out.
If you keep your exercise clothes laid out then it removes that barrier and makes it easier to get up and go to exercise. When I get home from work I change straight into gym clothes even if I’m not going to work out for another couple of hours.
Keep a TV show/audio book that you are excited about, that you only ever watch in the gym. Then you can never progress the story without going to the gym.
Will-power is a finite resource in the day
The scientific name for this is “ego depletion”, but recent evidence is suggesting that it may not actually be a thing, with multiple attempts to replicate the original result failing to do so.
In fact, the best evidence for ego depletion seems to be possibly that it’s a sort of nocebo. That if you believe your willpower is spent for the day, you give yourself an additional excuse not to make harder choices.
TIL.
This is going to be my new phrase…sorry, I can’t do that right now as my ego is depleted.
Think I’ll go in the opposite direction then and try to train myself to believe that willpower is infinite. Kamina style.
It really is difficult. There are a lot of good tricks you can play to make yourself do it, you just gotta find which one works for you.
Someone else mentioned having a show that you only watch while exercising. If non-static exercise like running or walking is more your thing, swap that for a podcast or audiobook. (I recommend checking your library’s audiobook programme if they have one, or check out one of the smaller audiobook sellers, before giving money to Amazon’s Audible, if possible.)
Another option is to set yourself a goal. Tell yourself you’re doing a half marathon in six months and actually sign up for it to commit yourself. Or a 60 km bike ride. Or an Olympic distance triathlon. If you want, especially if you’ve already done this trick once or twice and need something a little spicier, add a time goal to that. Do the HM in under 2 hours, the triathlon in under 3, whatever.
The hardest part is often getting out the door. Tell yourself it’s a success if you just put your shoes on and step outside. Once you’re there, its much easier to start running than it is from inside. If it’s still hard, tell yourself you’ll just run to the end of the street and turn back. Once you’re at the end of the street, set a new goal, etc. I find it best not to plan a run that involves multiple laps, because I’m much more likely to end up only doing 5k if I plan on doing 2 laps of a 5k course than if I set out on a 10k single loop.
Have people you train with. Training directly with people is best, and as an added bonus is really healthy mentally in terms of socialising. But failing that you could always find an online group of people, or just a chat group of IRL friends, who check in on each other and hold you accountable.
If whatever exercise you have been doing doesn’t work for you, try something else. If you’re not a runner, hop on a bike. If you don’t enjoy riding, get in the pool. A social team sport like netball, touch footy, or ultimate frisbee could be good, if you can find a friendly non-judgmental group.
If you’re a data nerd and/or the kind of gamer who likes getting all the Steam achievements, buy a Garmin. Try and build up a streak, or watch your time or distance climb the more often you train. Earlier this year I earnt myself the trophy for meeting my step goal 90 days in a row—I had step goal set to automatic, where it increases every time you meet your goal, and decreases if you miss it. Increases more if you overshoot by a lot.
You could plan out some GPS artwork and ride or run a route that draws something cool. You may need to train up to be able to achieve the distance, if your artwork is more ambitious.
That’s just a few of the tricks I have used at varying times to varying degrees of success to help keep up my exercise habit.
Thanks for the tips! I think the main barrier for me is that I have a kid with unmanaged ADHD that, frankly, takes up 92% of my spoons. I don’t blame him of course, but having to do someone else’s executive functioning (often against their will) on a daily basis takes a lot of me. I also work fully remote, and so all my income is based on whatever willpower is leftover from parenting, so I have at best maybe a thirty minute window in every day where if I don’t have the spoons to do it right then, the day is a write-off.
I think I’d do really well if I had other people as part of my routine, but southern England’s social scene has been a tough nut to crack as a slightly off-putting American, especially one that doesn’t touch facebook… Up until this summer I’ve been making do as the sole earner, so hiring a personal trainer was off the table. Maybe it’s time to get over myself and find something at the gym. It’ll be new years resolution season soon, so there’s bound to be other reluctant nerds to socialize with, as a bonus.
I have a coworker who’s been doing morning hikes with a friend who lives 1000 miles and an entire timezone away. They call each other and chat while they both go for a walk on whatever their local path of choice is, and it forces both of them to go out every day
I don’t know if this is at all a viable option for you, but some of my favourite memories from growing up were going for runs with my dad. It’s not the kind of exercise that’s going to get you marathon trained, and my dad was also doing a heap of exercise on his own without me, but if you just wanted to get enough exercise in to feel like you’re being healthy, that could be one way to fit it in—with the added bonus of helping your kid’s mental and physical health at the same time.
I should be jogging him in to school, it would be a benefit to us both.
Yeah absolutely! Or even just walking him in. A brisk walk (ballpark: <10 min/km) is quite good exercise.
My brother walks excessively and I’m envious. I’ve never been healthy in my adult life, but I used to move a lot more. A few years back, though, I broke my ankle and the ER surgeon apparently repaired it using a method that’s easy to mess up … And messed it up. I can stand and walk, but doing so for any noteworthy distance or time is hard and very painful. Honestly, even things like showering take me out for a while to recover. I rarely walk down my driveway to get the mail because I’m never quite sure I’ll make it back up.
Two subsequent orthopedic surgeons have said that, while there are things they can do that might slow down how bad it gets worse, it will probably never get better. As I said, I’ve never been healthy or fit in my adult life, but since I broke my ankle I’ve probably gained another fifty pounds. It’s embarrassing.
That really sucks. Did you ever go to a physiotherapist during your recovery? At work I handle a lot of injury claims, and this is often the case, and before you’re discharged from care, they walk you through a tailored home exercise plan. It’d be great if you could see one for a single session just to have them figure out a program that fits into your life.
Is a physiotherapist the same as a physical therapist? They set me up with an at home physical therapist for the first few weeks after my cast came off. (Side note: My kid was just barely two at the time and there are a few very cute pictures of them trying to do the exercises alongside me.) After that ran out, I had a few months of physical therapy at their office, but they stopped seeing me because my insurance “wouldn’t keep paying since we aren’t seeing improvement.” (I did all the exercises on site as well as the ones they suggested for at home. They said it was nice to have a patient who listened.) I have considered seeing a PT on my own dime, but it doesn’t seem worthwhile since we weren’t seeing improvement.
According to my current doctor, the problem is that they went with a “tripwire” repair, which is usually used when the bones are weak, usually due to the patient being a senior. It’s not recommended for younger or healthier patients because it basically pulls the bones together and it’s easy to over- or under-pull them. Apparently my surgeon over-pulled them, causing some crucial parts to be misaligned as well as causing arthritis.
I am young enough that my bones are pretty solid (when they haven’t been shattered) so they should have used another method (though ATM I can’t remember the details).
I also have a history of dislocated joints (I’ve dislocated my shoulder fourteen times) so, when I broke the ankle, I thought it was dislocated rather than broken. I tried to twist it back in place and stand on it … Twice. That probably made things worse. (The ER staff were horrified when I mentioned it to them.) Amusingly, the person who found me and helped me deal with it was a physical therapist who mostly worked on ankles; he was a pretty solid comfort while I waited for the EMTs. Telling that story is the one good thing that came out of the event.
My current doctor does say I could ride a bike with no more risk than anyone without a broken ankle and I’ve been wanting to do that - I even got an e-bike so I could make it back home if I ran out of pedaling energy. Unfortunately, I’m kind of afraid to use it (even though I used to be an extremely prolific biker) and, by the time I’d psyched myself up for it, it had started snowing here.
Sorry for the WoT. I do appreciate you asking.
I never mind walls of text. I know that when I write them, it’s because I haven’t the time to edit down.
Insurance sucks. I work in maritime, so I read a lot of medical reports of injured seamen. Your insurance probably used a doctor working out of scope and without the proper remit to be making that call to decide to cut you off. Should ask for the name and license of the doctor who made that decision if possible, I hear they usually fold rather than admit to defrauding customers.
It also sounds like your surgeon really fucked you. Suing people drains your life away, so I’m not going to suggest it, but I’ve definitely heard of folks winning cases on weaker grounds.
Tell you what: another lemming in this comment chain talked me into maybe signing up for a class. If I do that, will you try to bike as soon as the weather improves a bit?
I don’t mind the insurance bit. It does suck that they cut me off, but it’s also true that I wasn’t seeing improvement after several extensions. Even if they had continued paying, I doubt that would have changed.
The aforementioned brother also mentioned suing the surgeon. I declined to do so primarily because I sincerely doubt there was any malice in his actions. He continued to see me after the surgery and seemed to be making his best effort to help me improve. Even though he made a mistake, I don’t want to punish him and I don’t need anything I could get from litigating. You could argue that suing might teach him something by bringing his attention to his mistake, but if he were likely to be made aware of it, it he probably would have done so after seeing me regularly for months. He even met with me and an “ankle specialist” (though I would have thought that the guy who physically rebuilt my ankle would be a specialist himself) who, though he didn’t mention it to me, hopefully had a discussion with the surgeon behind closed doors. Other than not mentioning the incorrect surgery approach, the specialist said all the same things as my current doctor, so presumably they are similarly qualified to observe the error.
Regardless of all of that, it’s been almost three years now and I’ve moved hundreds of miles and several states away. I’m not sure how things like statutes of limitation apply to suing and medical malpractice, but I’m not sure I still could sue even if I were so inclined.
I definitely intend to do some biking once I can safely do so. In the meantime I bought an elliptical that I can use nearly regardless of weather and intend to see how my ankle handles it. Thank you for providing accountability.
Good luck with your class; what class is it?
I haven’t signed up for it yet, only decided to finally bite the bullet today talking to someone in this thread. There’s a membership deal at the local fitness center where you get unlimited gym, swim, and fitness classes. It’s right by my kid’s school and I always have between 9 and 10 to do whatever, so I figure I can always just go for a swim or attend a group session or lift, depending on the day. It’s a lot cheaper to get an annual pass so I’ve held off until now.
That sounds like an excellent use of your time. Good luck!
What about swimming?
Since the incident, I have been fortunate enough to move to a home with a pool. So far I’ve only had a few opportunities to use it, but they have been pleasant and not generally hurt my ankle.
I have found that my ankle or leg cramp to a debilitating degree fairly frequently while in the cold water, but that usually doesn’t last too long. It is possible I could make better (and/or more frequent) use of the pool, but that will have to wait until warmer weather to determine. Thank you for the recommendation.
You can also go to a club with a climatized pool all year. I go to one for swimming, but there are allot of people doing aquagym too. Swimming its awesome because dont hurt your articulations but let you train muscles.
Thank you for the thought! I live in a pretty small town. I would be very surprised if there were such a facility within an hour of here (not to say I wouldn’t travel a two hour round trip to mitigate my pain, but it would be discouraging). If swimming in my pool next year helps, I’ll look into finding an indoor pool for the next cool season.
I’m so sorry. You have nothing to be embarrassed about, though I know that’s easier said than done. I hope you find peace and ways to move joyfully that make you feel good.
Thank you for the kind words. The ankle thing has shaped my life and capabilities in ways I never would have guessed ever since it happened.
I have a now-five year old whom it has also clearly influenced and I feel bad about causing them trauma. You wouldn’t believe how many of their stuffed animals have also suffered broken ankles or legs since I did.
This doesn’t work for many conditions which can be worsened by graduated exercise. ME/CFS being one of them.
CFS is a bitch for exercise, I used to “have it” until we found and treated my underlying cause.
Walking a mile doesn’t even really register as exercise to me.
Your fitness level really affects how much activity you find tiring. I remember back when I was a teenager working at a grocery store I freaked out because I saw a woman dripping with sweat and panting (I was worried it was a heart attack or other medical emergency) and she explained that she’s fine, she just decided to walk her shopping instead of getting a motorized cart today.
Or for a more personal anecdote, I got on my bike for the first time in a decade early last spring and barely made it one block on the bike before being at the nearly-vomitimg-from-over-excersion point then by biking every day I got up to biking 8 miles a ride by the end of fall
You don’t have to be tired for it to be exercise
Ideally you’ll feel some amount of something for the excercise, but some activity is always better than nothing
OOP did mention chronic pain, so to them it probably is.
when you spend most of your time in a relatively sedentary lifestyle, walking a mile can be a lot of exercise. for someone who wants a minimum of 12,000 steps a day, it seems like nothing, but for someone who averages maybe 1000 steps, it can take a lot of physical and/or mental effort. especially if that person is dealing with chronic pain or depression
Yeah, same. Its remarkable tbh
I want that song. Is it just called Castamere?
The Reyens of castamere, I think
