My biggest fear is deconditioning

[Johnskip]

How can you be able to lift 200 lbs easily in gym and then go home and not be able to function at all

 

[Woolie]

@Johnskip, we all do this. Overdo it and then regret it later. Sometimes, its an obvious overdo, we knew we shouldn't have, but what we did was important/unavoidable/fun. Other times, its only obvious we overdid it later. Sometimes, you just can't predict what going to bring on a crash, because it depends on the day.

My partner, who's normally really understanding, used to say, "you were silly to do XYZ, you shouldn't have, why didn't you think of the consequences?"

To which I now reply "you try having this illness, not doing all the the things you want to, need to and/or feel obligated to do, and measuring your activity and predicting the consequences perfectly so you get it right every time, just you f**ing try that, and if you succeed, only then you can tell me 'you shouldn't have' ".

So don't beat yourself up about it. Rest now as much as you can. In bed. Intense rest. Sleep if you can. Don't mess around with just sitting. Get full rest. Take painkillers, strongest you have. I'd go so far as to recommend sleep meds at this point to help with the rest, if you're the sort of person who's okay with that.

And when you're better you can work on a way to minimise these awful down periods in future. It'll probably involve settling for doing a fair bit less on any given day than what you think you're up to. That will probably bring you more benefits in the long run (because less down time needed to recover).

 

[Woolie]

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

Sorry, @Johnskip, I only just saw this. I personally think there's a place for sleep meds in ME crises. So you can get the rest you need to recover. But its very personal, and I appreciate your worries.

But the attitude "I wont give in" has GOT to change. You MUST give in. All that "Lord grant the courage to change the things...blah blah, etc. etc." The bit about accepting the things I cannot, never was a truer word said when it comes to ME (and I'm not religious). Resistance brings misery.

 

[Johnskip]

Sorry, @Johnskip, I only just saw this. I personally think there's a place for sleep meds in ME crises. So you can get the rest you need to recover. But its very personal, and I appreciate your worries.

But the attitude "I wont give in" has GOT to change. You MUST give in. All that "Lord grant the courage to change the things...blah blah, etc. etc." The bit about accepting the things I cannot, never was a truer word said when it comes to ME (and I'm not religious). Resistance brings misery.

well said Woolie your 100 percent correct I am having such a difficult time giving in

 

[NelliePledge]

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.

I dont want to improve my health for whatever benefits I would get when Im in my 80s (already in 50s) nobody knows how long I will live - I have a great aunt who is nearly 90 my dad died when he was 63 I have a friend just died aged 56. Having been a very active person with a very responsible job my mum spent her entire 60s and70s with severe dementia being wheeled around in a nursing home
My focus is on making each day now as good as it can be whether that is about socialising with friends and family or taking quiet dasy to focus on positive resting through meditation so that I can have active days.

 

[Johnskip]

@Johnskip, we all do this. Overdo it and then regret it later. Sometimes, its an obvious overdo, we knew we shouldn't have, but what we did was important/unavoidable/fun. Other times, its only obvious we overdid it later. Sometimes, you just can't predict what going to bring on a crash, because it depends on the day.

My partner, who's normally really understanding, used to say, "you were silly to do XYZ, you shouldn't have, why didn't you think of the consequences?"

To which I now reply "you try having this illness, not doing all the the things you want to, need to and/or feel obligated to do, and measuring your activity and predicting the consequences perfectly so you get it right every time, just you f**ing try that, and if you succeed, only then you can tell me 'you shouldn't have' ".

So don't beat yourself up about it. Rest now as much as you can. In bed. Intense rest. Sleep if you can. Don't mess around with just sitting. Get full rest. Take painkillers, strongest you have. I'd go so far as to recommend sleep meds at this point to help with the rest, if you're the sort of person who's okay with that.

And when you're better you can work on a way to minimise these awful down periods in future. It'll probably involve settling for doing a fair bit less on any given day than what you think you're up to. That will probably bring you more benefits in the long run (because less down time needed to recover).

another thing wrong with me I refuse to take medication even though it hit my lips last night but didn't go down my throat

 

[stridor]

I also went from being in the top 5 percentile for fitness, given my age, to needing help to stand up all within a few months. No news to you guys.

Seems that I have managed to find my way back for the most part but I do not take this for granted. Many here have had remissions reverse themselves. I am active again and can exercise within reason.

I just wanted to say for those with clumsiness or balance issues that with recovery there has been an improvement with my Romberg's sign. A couple of years ago, if I closed my eyes I would lose my balance in a few seconds. Now, there is some mild swaying but I can "go all day". So, even these signs of neural damage do come along in time.

If we are talking about fears then mine at this point in my recovery is the fear of dementia. I still have very mild but persistent fog that I can not seem to shake. It is mostly when I am on my feet and my mind is not occupied. For example, I do not have fog when I am standing with my camera.

My memory is a bit soft as well but better than before by a long shot.

I think that the dice have already been rolled as to whether I get to keep my mind until the end or not. My brain has been through mercury toxicity, psychosis, B12 deficiency, ECT and carbon monoxide poisoning. It is dementia that I fear.

 

[Johnskip]

I also went from being in the top 5 percentile for fitness, given my age, to needing help to stand up all within a few months. No news to you guys.

Seems that I have managed to find my way back for the most part but I do not take this for granted. Many here have had remissions reverse themselves. I am active again and can exercise within reason.

I just wanted to say for those with clumsiness or balance issues that with recovery there has been an improvement with my Romberg's sign. A couple of years ago, if I closed my eyes I would lose my balance in a few seconds. Now, there is some mild swaying but I can "go all day". So, even these signs of neural damage do come along in time.

If we are talking about fears then mine at this point in my recovery is the fear of dementia. I still have very mild but persistent fog that I can not seem to shake. It is mostly when I am on my feet and my mind is not occupied. For example, I do not have fog when I am standing with my camera.

My memory is a bit soft as well but better than before by a long shot.

I think that the dice have already been rolled as to whether I get to keep my mind until the end or not. My brain has been through mercury toxicity, psychosis, B12 deficiency, ECT and carbon monoxide poisoning. It is dementia that I fear.

my fear is dying in one of these crashes I have?

 

[tpsss]

I'm not sure what your thought are on Benadryl but that stuff usually puts me out pretty quick, although I build up a tolerance too it after 2 or 3 days.

 

[Cog71]

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?????

I don't know why either, but one thing that helps me a little is a Fitbit thingy that displays a constant heart rate. Walking or stretching, whenever my heart rate surpasses 140 and doesn't come immediately back down I know I'm going to be in trouble. Before the monitor I think I knew this instinctively - kind of a wobbly, nauseous, 'oh shit I've gone too far' feeling that sometimes happened after five minutes, sometimes after 20. But it wasn't very precise, and often by the time I felt it it was too late. Wearing this thing makes it a lot easier to decide to either go straight to be or to carry on a little.

Interestingly it works the same when I'm not in the gym. I'll be driving, suddenly feel very hot and stressed, like I need to pull over. Sure enough my heart-rate is way up in the 140s. If I can manage to go straight home I can usually fend off a huge relapse. If i can't, then it will be three or four straight days in bed. No closer to understanding why this happens (although I know heat and stress are factors) but at least I can to some extent prevent the massive overexertion crashes to which I am very prone.

 

[Cog71]

yeah - that's what I'm constantly asking myself. If my body is capable of this, then how can it also be so poorly?

 

[stridor]

@Johnskip
my fear is dying in one of these crashes I have?

Don´t worry, I remember I remember having my first dose of DMSA (for mercury detox) sitting on the table and being the sickest that I had ever been in my life (prior to this was Q-fever). I knew that some people felt better with chelation and some felt worse and my wife and I had a head-to-head on whether I got to survive feeling worse.

There was no way out but forward and so I took it. I was one of the ones that felt slightly better.

 

[TigerLilea]

I dont want to improve my health for whatever benefits I would get when Im in my 80s (already in 50s) nobody knows how long I will live - I have a great aunt who is nearly 90 my dad died when he was 63 I have a friend just died aged 56. Having been a very active person with a very responsible job my mum spent her entire 60s and70s with severe dementia being wheeled around in a nursing home
My focus is on making each day now as good as it can be whether that is about socialising with friends and family or taking quiet dasy to focus on positive resting through meditation so that I can have active days.

None of us know how long we are going to live. Not even the healthy "normals". Just in case I do make it into my 80s, I want to get there still being able to care for myself and not be dependent on care aides in a senior's home.

 

[Dechi]

@Woolie I agree we shouldn't be so concerned about our external appearance. But I think the loss of the capacity to exercise is much more than that. To me, training was a way of letting go of the stress in my life. I am a very passionnate person, and I found a strong sense of accomplishment in pushing my body to its limits. While training, I felt so good in my skin, and more alive than almost any other time. Training when you're fit, when you reach this ability to give more and more, is actually exhilarating. It's like a drug. To the point where athletes who can't train anymore are given anti-depressants to prevent depression.

After a hard work-out, I had such a good feeling, even though I was exhausted. Now, I feel beaten all the time, and even more when I try to exercise a little bit. I have given up the idea of having a fit body, but still can't stop training completely. It's like I am thinking : when I beat this illness, I'll get back to it and regain what I lost.

People who have never trained hard and loved it will not understand this. It's just something you need to have done to understand (I am not suggesting you don't get it, it's just a general statement).

 

[Woolie]

Yes, of couse @Dechi. I miss exercise more than I can say. I was a fitness trainer before I got ill, and also a keen runner, skater, cyclist, skier and hiker. I miss all of these.

But don't you also suffer from this sense of shame about you body and its fitness levels - something you know is not your fault but still upsets you? That's what I'm talking about here. That's the bit where societal norms add to our suffering.

 

[Dechi]

But don't you also suffer from this sense of shame about you body and its fitness levels - something you know is not your fault but still upsets you? That's what I'm talking about here. That's the bit where societal norms add to our suffering.

Yes, I do feel ashamed. And being unfit upsets me greatly. You're absolutely right, it does add to our suffering.

 

[bspg]

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!

I'm feeling this SO HARD today. I spend 90% off my time on the couch, as getting up and doing things makes me so tired and out of breath, but some days I just want to push through out of frustration and low self esteem.

I know it's not helpful and would likely lead to more frustration and feeling worse but some days I'd much rather deal with PEM than feeling so trapped, useless, and terrible about myself

 

[bspg]

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

^^^^^ this. Being chronically ill (ESPECIALLY w/a disease that has been stigmatized for decades and has no treatment) is such an under-recognized achievement. If people only knew the battles we face every day, we'd be seen in such a different light.

We are ridiculously strong for trying to get through this illness. We are warriors and super heroes. We are true bad asses.

 

[TiredBill]

@Johnskip, After 33 years living with CFS the one piece of advice I'd offer is to become an expert on yourself and learn when exertion is the worst possible thing you can do to yourself, but also learn to gauge when activity and exercise are helpful to your well-being. For me at least, the benefits and risks of activity can change from day to day.

For me, it has been important to try to stay as active and as strong as I can. But one needs to be able to read oneself and know when to rest and how to avoid crashes and relapses.

All the best finding your balance. Be careful out there.

Bill

 

[Woolie]

I'm feeling this SO HARD today. I spend 90% off my time on the couch, as getting up and doing things makes me so tired and out of breath, but some days I just want to push through out of frustration and low self esteem.

I know it's not helpful and would likely lead to more frustration and feeling worse but some days I'd much rather deal with PEM than feeling so trapped, useless, and terrible about myself

Sorry to hear what you're going though, @bspg.

I've been ill a long time, but I had that feeling of anger and rebellion you describe in the early years. Once I got so angry with my body and its patheticness, that I got out of bed in the night, and somehow staggered down to the river near our house, lay down on the cold grass, and stayed there shivvering for what seemed like hours. I felt much worse physically, but better emotionally.

I certainly wouldn't recommend that. But hell, with what we deal with, we can't be expected to behave with perfect wisdom and sensibleness 24/7.

Its all a difficult balance between keeping your sanity and not exacerbating your health problems.

But maybe you can address the feelings of uselessness and low esteem, and that would give you some peace. Being ill is not your fault, and you know that, but there's this bit of you that still feels ashamed. You have nothing to be ashamed about.