My biggest fear is deconditioning

[arewenearlythereyet]

Gosh, reading this thread, it just strikes me how indoctrinated we are into the idea that physical fitness is some kind of moral good. It is nice when you body looks "good" (according to our social mores). But keeping fit is considered a moral good too (the "right thing to do"). These things have been risen to the level of major sources of self-esteem for many people.

Of course, some people also need to be reasonably fit to enjoy doing their favourite things - but since we all have ME and can't do these things anyway, this part of the issue doesn't seem relevant to us here.

The OP's terrible fear of deconditioning really brings to the fore how much our self-esteem can be tied up with physical fitness. Keeping fit is not a good health practice for ME sufferers - its the opposite. But still we feel somehow less worthy because we aren't fit - that's how powerful these social standards are!

Not trying to put myself "above" all this. I also struggle with my ghastly fat body (I was a fitness instructor before I got ill). We're all vulnerable. But maybe it helps if we all occasionally take a step back and see it for what it is.

I've always been of the opinion that the more you raise your heart rate the closer you are to death. I think this was after I heard that a mouses heart has the same number of beats as an elephant during its lifetime. The mouse has a shorter life since its always on the go. I'm not sure if that is total bollocks but my lecturer at uni was of this belief.

In any case I think I would rather be an elephant. Judging by my increasing waistline I'm nearly there!

 

[Johnskip]

I was in excellent shape when this all hit. Working out is what keeps me sane and it's been a social outlet. It's part of who I am.

I'm not as bad as some people, but throughout the past year, I've slept 10-16 hours a day, had a clear head only an hour on many days, have been dizzy, had trouble walking at times, and had PEM with too much physical, mental, or emotional exertion.

There are several kinds of damage exercise can cause, and I've discussed the wisdom of exercising with my doctor, a very perceptive naturopath who's treated many CFS patients.

We decided I should keep exercising, but stay at 70-80% of what I think I can do on any given day, to promote mitochondrial biogenesis, brain derived neurotropic factor and get other benefits of exercise.

I get IV and oral supplements to support my mitochondria and antioxidants to head off oxidative stress. I take T3, T4, B5, B12, carnitine, hydrocortisone, NADH, d-ribose, BCAAs, creatine, and KetoCaNa prior to exercise.

What I do these days is diminished, but I've managed to keep lifting weights 5-6 days a week. I do a short cardio warm up, then 2 sets of 6-8 either upper or lower body exercises, at 50% of my former strength. Some days, I've only done 2 or 3 exercises, then called it a day

I take my time, sit, lie down, and rest frequently, and generally need 2-4 5-10 minute naps right on the gym floor, when I feel woozy.

Then I go home to bed and sleep.

Cardio trashes me, but the low level weightlifting seems to work.

I've been starting to improve over the past 3 months, and am finding I need less rest, but can't necessarily do more yet.

Overall, I still look like I'm in good shape for a 55 year old woman, even though what I just described is the only activity I've gotten on some days with the rest spent on the couch or in bed. But I do feel that fighting this battle has been helpful to me. I just can't fight very hard.

It's finding what you CAN do, and having gentle perseverance.

God Bless that your still living!!!!

 

[Johnskip]

Gosh, reading this thread, it just strikes me how indoctrinated we are into the idea that physical fitness is some kind of moral good. It is nice when you body looks "good" (according to our social mores). But keeping fit is considered a moral good too (the "right thing to do"). These things have been risen to the level of major sources of self-esteem for many people.

Of course, some people also need to be reasonably fit to enjoy doing their favourite things - but since we all have ME and can't do these things anyway, this part of the issue doesn't seem relevant to us here.

The OP's terrible fear of deconditioning really brings to the fore how much our self-esteem can be tied up with physical fitness. Keeping fit is not a good health practice for ME sufferers - its the opposite. But still we feel somehow less worthy because we aren't fit - that's how powerful these social standards are!

Not trying to put myself "above" all this. I also struggle with my ghastly fat body (I was a fitness instructor before I got ill). We're all vulnerable. But maybe it helps if we all occasionally take a step back and see it for what it is.

thankyou so much my first loss was the inability to play basketball which was devestating to me then I can still lift weights now I can only lift a little bit and I'm fearing I am going to lose the ability to do it

 

[Johnskip]

Gosh, reading this thread, it just strikes me how indoctrinated we are into the idea that physical fitness is some kind of moral good. It is nice when you body looks "good" (according to our social mores). But keeping fit is considered a moral good too (the "right thing to do"). These things have been risen to the level of major sources of self-esteem for many people.

Of course, some people also need to be reasonably fit to enjoy doing their favourite things - but since we all have ME and can't do these things anyway, this part of the issue doesn't seem relevant to us here.

The OP's terrible fear of deconditioning really brings to the fore how much our self-esteem can be tied up with physical fitness. Keeping fit is not a good health practice for ME sufferers - its the opposite. But still we feel somehow less worthy because we aren't fit - that's how powerful these social standards are!

Not trying to put myself "above" all this. I also struggle with my ghastly fat body (I was a fitness instructor before I got ill). We're all vulnerable. But maybe it helps if we all occasionally take a step back and see it for what it is.

Agree with you 1000 percent but just being honest I was into fitness and athletics and body building all my life for me it is my life I had an extremely happy life liking the way I felt and looked until this happened and I would love to keep as much as possible but it doesn't seem possible I know

 

[TigerLilea]

As I'm heading towards my 60s in a few years time, I do think about deconditioning a lot more now than I did in the past. Our physical health in our 50s and 60s will determine what kind of life we will have when we head into our 80s. I want to be able to walk and take care of myself later in life. I don't want to be a vegetable being wheeled around in a nursing home.

Also, I have heard several people say over the years (Rich Van K is one who comes to mind) that the people who get at least some exercise while living with CFS/ME will have a much better chance of recovery in the future than someone who doesn't get any exercise.

 

[Dechi]

@Learner1 You're making me wonder... I have been regressing in the last 3 months and I stopped doing my 4 minutes of weight lifting at the gym a few times a week (it takes me 45 minutes to exercise 4 minutes, with all the rest).

Since I feel bad, I don't go but what if not going is actually making me worse also ? Food for thought...

 

[Sandman00747]

Here's is a kicker about losing conditioning: you can also get balance problems as the legs, ankles and feet lose muscle tone. I've noticed this and don't like it a bit!

Because of this I have suffered several nasty falls over the years. Nowadays I am always prepared to roll when I trip or fall and the damage is minimal. But you're right @Sushi , I don't like this one little bit!

 

[Lissyleigh]

It would be impossible for me to do any exercise when lifting the slightest thing makes my arms weak and heart pound. Just doing daily living tasks is a struggle- I know it's bad when cleaning my teeth makes me feel like I've done a workout. Just shows any exercise must be considered on a case basis. I've landed in hospital before now due to trying to gently exercise. If you can that's fab but be careful! It took me years to improve from a severe relapse.

 

[Woolie]

Agree with you 1000 percent but just being honest I was into fitness and athletics and body building all my life for me it is my life I had an extremely happy life liking the way I felt and looked until this happened and I would love to keep as much as possible but it doesn't seem possible I know

Totally understandable, @Johnskip. Of course you grieve your lost self! I feel the same. I wasn't trying to preach or criticise, just pointing out that all this is made harder because of our society's emphasis on physical fitness, fit bodies and exercise.

Most of us here can't do our favourite activities because of our illness. That's our main limitation. The deconditioning is not the limiting thing, its not the primary thing that stops us from doing activities. So that's why people are so puzzled that you've honed in on the deconditioning specifically. For most of us, that's kind of the least of our worries.

I do hate though, my lack of motor control. I feel unbalanced going down steps. Like an old woman. That's upsetting.

 

[Learner1]

@Learner1 You're making me wonder... I have been regressing in the last 3 months and I stopped doing my 4 minutes of weight lifting at the gym a few times a week (it takes me 45 minutes to exercise 4 minutes, with all the rest).

Since I feel bad, I don't go but what if not going is actually making me worse also ? Food for thought...

I think we all have a threshold of what we can do, which varies dramatically from patient to patient. And for each of us, it varies from day to day. Going above that threshold can be damaging and counterproductive.

Exercise promotes mitochondrial biogenesis and brain derived neurotropic factor. I want as much of these as I can. I also want to maintain as much strength, balance, flexibility as possible, so I can get around and not hurt myself.

So, my thought is to do what I can do every day to maintain as much fitness as I can, without causing damage. My doctor supports this theory and monitors me.

I assess my body, set goals for what I think I can do for each workout, and listen to my body. If I feel woozy, I stop everything and sleep, wherever I happen to be. If things aren't going well, I stop the workout and go home to bed. I adjust weights up or down and the number of reps as I need to. And I am very careful about cardio...I do very little, but I do some, on an elliptical trainer, for short periods of time. And, I support it all with nutrients.

I've done this through bad times and better ones, and am slowly improving, though I'm at 40% of what I used to do.

It just hasn't made sense to me to do nothing. As a former athlete, having rehabbed injuries, it's just made sense to be persistent and do things a little at a time, even if it's not much.

Hope this helps.

 

[Aurator]

Agree with you 1000 percent but just being honest I was into fitness and athletics and body building all my life for me it is my life I had an extremely happy life liking the way I felt and looked until this happened and I would love to keep as much as possible but it doesn't seem possible I know

Like a number of respondents, I was a competitive athlete before illness struck four years ago.

At first the loss of conditioning is frustrating and you fight, inadvisably, against it. You may even try to "work out", if despair of recovery allows the siren voice of current medical "wisdom" to convince you that, in spite of everything your body is telling you, your illness is all in your head.

Then one day you realise that this terrible illness IS your workout, a never-ending workout that is a truer test of strength and endurance than anything you did when you were well.

It's not athletes I admire nowadays for their ability to achieve what ordinary mortals cannot, but people with chronic and debilitating illnesses like ours.

 

[Lissyleigh]

Aurator your post really touched me, it's so true. So many people fighting chronic and invisible battles, often being disbelieved by medics and even loved ones in the process, and yet keep going each day...that is true strength.

 

[Johnskip]

I think we all have a threshold of what we can do, which varies dramatically from patient to patient. And for each of us, it varies from day to day. Going above that threshold can be damaging and counterproductive.

Exercise promotes mitochondrial biogenesis and brain derived neurotropic factor. I want as much of these as I can. I also want to maintain as much strength, balance, flexibility as possible, so I can get around and not hurt myself.

So, my thought is to do what I can do every day to maintain as much fitness as I can, without causing damage. My doctor supports this theory and monitors me.

I assess my body, set goals for what I think I can do for each workout, and listen to my body. If I feel woozy, I stop everything and sleep, wherever I happen to be. If things aren't going well, I stop the workout and go home to bed. I adjust weights up or down and the number of reps as I need to. And I am very careful about cardio...I do very little, but I do some, on an elliptical trainer, for short periods of time. And, I support it all with nutrients.

I've done this through bad times and better ones, and am slowly improving, though I'm at 40% of what I used to do.

It just hasn't made sense to me to do nothing. As a former athlete, having rehabbed injuries, it's just made sense to be persistent and do things a little at a time, even if it's not much.

Hope this helps.

I'm in and out of feeling woozy all the time!

 

[ukxmrv]

I'm overweight and that increases the lectures from doctors about my current and future health. Recently discovered that I have both Lipoedema and Lymphoedema. My family has a history of osteoporosis, cancer and heart/circulatory problems.

My Lymphoedema nurse wants me to wear compression garments but I can't even get these on reliably (too weak and get PEM if I persist). They also push manual lymphatic drainage which to me is just more PEM inducing exercise. There is nothing else on offer through the NHS in my area.

Being unable to exercise is frustrating. I don't know how much being unable to exercise affects all of this for my future old age (if I have one).

When I talk to doctors they don't listen. They keep hammering into me the advantages of exercise per family risk diseases and don't seem to be able to think outside the box on how to advise someone with ME. I'm having to think about solutions and then buy what I can afford to.

 

[Johnskip]

what should I do need help
I just pushed to much back to back days in gym because I felt good oh no big mistake I feel horrible hardly can type this text

 

[tpsss]

what should I do need help
I just pushed to much back to back days in gym because I felt good oh no big mistake I feel horrible hardly can type this text

For now I would forget about working out, take a couple of months off and get better and then when you think you can get back in the gym rest some more, because you could quite possibly permanently damage yourself. I know I have made my condition worse by working out at the outset of my illness and not respecting my body' need for rest.

 

[Johnskip]

For now I would forget about working out, take a couple of months off and get better and then when you think you can get back in the gym rest some more, because you could quite possibly permanently damage yourself. I know I have made my condition worse by working out at the outset of my illness and not respecting my body' need for rest.

Thankyou I know you are right I am having a very hard time stopping and it's very foolish I'm very sad right now because I actually felt the best I did in 2 years yesterday and today and know I can't move in a full blown crash attack

 

[Johnskip]

every time I have one of these attacks it's bad for about 10 hours before I can get a little sleep I have been staring like a zombie on my couch for 7 already and feel horrendous with panic setting in with high blood pressure spikes when normally my blood pressure is so low I get the colonopin out and I hold in my hand and I don't take it because I had a prior problem with benzo along time ago and don't want to start that route I'm having a really hard time with this illness and won't give in and guess what I'm not winning the battle right now

 

[ScottTriGuy]

It's not athletes I admire nowadays for their ability to achieve what ordinary mortals cannot, but people with chronic and debilitating illnesses like ours.

Indeed.

Unbeknownst to me, triathlon was merely training for ME. The mental skills I developed in training serve me well today.

I also day dream almost every day about going for a run in the ravine near my house.

One day I'll be able to do that again.

I've had 2 'remissions' and was able to triathlon train and race, so believe it can happen again...but without the subsequent relapse .

 

[Johnskip]

For now I would forget about working out, take a couple of months off and get better and then when you think you can get back in the gym rest some more, because you could quite possibly permanently damage yourself. I know I have made my condition worse by working out at the outset of my illness and not respecting my body' need for rest.

Now I know immediately when I'm done working out if I am going to crash after feeling really really good during workout on drive home it started the flight or fight response which my body is still in 16 hours later why?????