Discussion in 'Lifestyle Management' started by Scavo86, Mar 22, 2010.
Nah, you're fine.
Say what you will, but let it be known that I wasn't the first person to resort to ad hominem.
You should be examining your own rhetorical psychobabble, you do not speak as a virologist nor do you speak as an expert in the field of immunology or neuro-immune diseases, your thoughts and words on the subjects are little more than ill informed conjectured opinion. Because of that I don't think anything you say should be taken seriously, especially considering you speak about yourself in the third person perspective, I find it rather odd. Each and every one of your posts should be suffixed with "for entertainment purposes only" based on the weight they carry.
Many people on this forum don't have the same thing you had/have.
Whilst you may feel sufficiently conceited enough to think otherwise, your words mean less than the "bankrupt" people you present yourself as being better than. You do not speak for me, and you do not speak for any of my friends on this forum who have suffered for many years with a real disease.
Shame on you.
I get what you are saying and totally agree - if you want to heal from cfs or at least get your life back, like many people have done do a bit of research and read the stories, you probably need a specialist to help you find out what needs to be changed for you and it is usually diet imo. as a first step and for now I think it has to be raw foods. But the most important thing is attitude and if you think you will not get better then you will not even if you have tried many things without this conviction that you will heal. One's mental state is vital for this and for any serious illness you want to recover from like cancer and aids both of which people do recover from all the time.
It is hard and takes time and that is why a positive attitude is vital and why many fail. I know that this upsets many - the thought that someone is saying that you could be well if you just tried harder so it is a psychiatric problem and Wessely is right but that is not what Carter is saying. It upset me at one time but I have gained confidence in the body's ability to heal since then and have read the stories of many who have had typical symptoms but for someone who does not want to believe this is possible then sadly they will not listen.
I had cfs even before a tick bite and mercury poisoning since early childhood and am for all purposes incurable and maybe I really am but I am not giving up and am continuing to find answers and now it is a raw food diet (maybe meat added) which I hope wil be the key to really turn things round.
I know there is a choice of either making life more comfortable and relieving stress or taking a step out into the unknown in sticking to a healing plan involving drastic changes for at least a year and probably more before any improvement but this is the secret I think and good luck Carter.
Nice post. Well balanced.
Just so you know, the rest of what I'm going to say is not directed at you, I know you just joined the discussion.:Retro smile:
You may realize by now that the way you present your ideas about cfs often has a very upsetting effect on other members here. You can have a very lively debate on another thread on this if you'd like. But this thread is about weight training.
I personally think you present some good stuff. But I also think that it also includes some ideas that many members find inflammatory. I realize there are other members who are very receptive to what you're saying, or who may take issue with some things but are interested in others.
What I'm taking issue with right now is, that the way you are presenting your views about cfs comes across as sweeping generalizations that to my thinking, are far too sweeping and too general to be true.
You remind me of myself a year ago. I was much improved for the first time in years, and hardly knowing anyone, and certainly not knowing anyone else with cfs but my son and a cousin, thought what worked for me would work for everybody.
I've since realized that isn't true. I've also realized that talking that way has a negating effect on those who don't fall into the same camp, or sub-set or whatever. It can be infuriating to those who are supremely crippled by a disease, -- and yes, I choose to call it a disease, it is my opinion and as valid as yours is -- to be told that it isn't.
If you want the people you talk to here to be receptive to anything you've learned from your own illness, whatever you want to call it, you would do well to use that analytical mind of yours and apply it here.
Take an objective look at how and what makes people crazy when you talk about this subject. Respect their reactions, and fine tune what you are saying.
But please do it on another thread, Carter, and Knackered and anyone else who takes issue.
This is a weight training thread, and by golly, I will sit on this thread all day if I have to, to keep it that way.
Feel free to start another thread on any subject you wish. Keep it respectful. Work it out.
Back to weight training.
Again, I think weight training can be done at certain phases of this illness, generally when we are 75% functional or better. Any less than that I think it would probably be a very bad idea.
As the body is already in too much of a weakened state and the exertion of even light lifting might make us much worse.
I even know this guy who has MS and bikes several miles a day and does light weight lifting, will he be able to do this 5 years down the road, maybe not.
Brenda: Always great to hear from you! I honestly think your attitude is the single most important factor in making a good recovery. Great to hear you're trying the raw food diet - that's one I've not tried yet, but heard a lot of good things about it.
I've been eating little more than chicken and white rice this week - doing a *proper* exclusion diet at last. Fructose, Fructan and Sorbitol problems are apparently very common in CFS, and that rules most fruit and veg out apart from grapefruit and lemon, pretty much! There are proper diet guides online, and a good wikipedia page. But just recently I've read of a lot of PWCs getting on really well after doing a couple of weeks on strictly just chicken and rice, then reintroducing things gradually.
The diet thing is VERY difficult to get right! Totally individual and it can be hard to tell what symptoms means - e.g. when you cut out an allergen/intolerance, your immune system can kick in a bit and make you feel like you've come down with something.
Jody: I get the same thing from a large part of the community when I *dare* suggest I've got myself better.
I know a lot of PWCs are fed up with the discrimination they get from the establishment who don't accept CFS as a valid medical condition, but we're just as bad on the reverse dealing with anyone who gets better...
I've lost 7 years of my life to crippling fatigue, being unable to lift a kettle, walk up 6 stairs without feeling like I'm on the verge of heart failure, going days without sleep, walking to the bathroom and passing out without a moment's warning, times when moving my arm in bed physically exhausted me to the point where I could hardly catch my breath, times most days when it felt like all the effort I had just to lie down and keep my breathing muscles from caving in, etc.
I spent 5 years struggling, trying to get myself well with advice off the internet, and despite ups and downs, only went backwards. I finally gave in and put my health in someone else's hands: strictly followed a protocol (which emphasized "do even less"), spent $hundreds on supplements, started charting everything I could on a spreadsheet, stuck to diets which would make small mammals cry with boredom, etc. and finally started pulling myself out of it.
So why is it acceptable for half the CFS community to tell me that despite years of total incapacity, and now years of hard work, expense and challenging my own attitudes and approach, that: I never had CFS/ME in the first place? (And not just me, I read blogs where people list celebrities, athletes, etc. who struggled with the condition, eventually found a path to recovery, then flourished and, in some cases, went on to win world championships, take their careers to new heights, etc. and so much of the community treats these people with disdain. "Oh it can't have been ME; it must have just been EBV, or depression, or whatever..." - every bit as bad as the doctors who didn't recognize the condition in the 80s.)
The thing a lot of people don't realise about recovery is that it can be a double-edged sword... Life is really difficult. We have expectations, ambitions, hopes, fears, insecurities... and the healthiest of people can find these things overwhelming - it drives people to drug addiction, recklessness, sometimes apathy. Even the most together people can be dangling from a thread dealing with all of this.
So I know as well as anyone that, despite the frustration and hopelessness, there's a strange contentment in being ill. It makes life very simple. People say the same about cancer. Life becomes a simple matter of getting through the day.
Now getting genuinely well is very different from the usual brief ups and downs you get with poorly managed/paced CFS. When you start to get *well*, all those ambitions and desires you had prior to illness start to surface again, and you start to feel that same pressure which drives teenagers mad when they've got to build (in our cases, rebuild) a life from nothing.
One of the things which puzzles me the most is that some of the most important and obvious lifestyle changes I should've made early on, I only wound up making years later when the severity of symptoms forced me to take action...
Why didn't I get with a specialist 6 months into my condition; why did it take me 5 years?
Why did I do a series of half-hearted elimination diets and not just start off with a proper one?
I could ask a dozen more questions like this, looking back at my illness and recovery...
Michael: My feelings exactly. Weights actually make me feel great now. Make me feel like I'm doing something positive for myself... But, they only seem to set my recovery back if I look at longer term trends. Maybe in another year's time... I've certainly put on pounds of muscle and improved my fitness just living a sedentary life and letting my body recover. I think most PWCs are in much the same state as athletes suffering over-training syndrome.
that would depend on how you define functional - or 75% functional - afaik at 75% functional you should be able to hold down a full time job? whilst theres no harm in being cautious in the last 15yeras I've never even been close to that level of functionality
What you're saying is very worth discussing. But not on this thread. Start a new thread.
This thread has been getting derailed for a day now, and I don't want that to happen.
This thread, as I have said a number of times now, is about weight training.
Wonko--When you recover and are about 75% functional that would be a good time to start weight training.
I understand after 15 years of being so ill that weight training may be such a distant thought at this point, heck maybe just everyday tasks may be too difficult right now.
Many of us have been in that situation and have been fortunate to get a good level of health back.
As improbable as it may seem, you can recover to that point someday, Im not saying its easy and happens more often than not, but possible.
erm...you missed the intent of what I was saying
I've rarely been above 40% functional according to the uk cfs disability scale (ie I'm 60-70% disabled) but do lift when I am more functional - which until recently was most weeks (with planed rest weeks of course) over the last 6 months or so and have generally had a good experience with only limited issues generally caused by the fact I'm still calibrating/learning my limits in this endevour
I dont consider any of the issues I've had to be a result of lifting persay - but simply down to my not recognising warning signs
I may be an unusual case however as with regards to some things I can be quite physically robust (unless I'm crashing) compared with what appears to be normal for a lot of members of this board - it generally takes a few to several minutes of a negative physical stimulus (pain, unsuitable exercise, enviromental stress etc.) to have a signifant and lasting negative impact on me - I make sure the duration is short and that I dont injure myself so that I dont exceed these limits - tbh this is the advantage of weights as far as I am concerned - that this strategy is not only possible but effective.
but I'm not 75% functional (and not likely to be) so shouldnt be lifting?
all I can think of is that we mean different things by functional - would 100% functional be normal? or is 100% functional able to cope but not at the level of someone who doesnt have M.E.?
or am I truely a freak?
edit - perhaps I should clarify what I mean by 30-40% functional
Moderate to more severe exacerbation of symptoms following physical and/ or mental exertion - 50% disabled - rising to
Moderate to severe symptoms following any form of physical or mental exertion. - 60% disabled if I miscalculate a bit
Able to perform deskwork or light duties for one or two hours during the day. Often confined to the house - 70% disabled
tho tbh based on the descriptions in that list I could be anywhere from 40-80% disabled depending on the day - provided the work didnt involve leaving the flat and didnt involve dealing with people - but most of the time i hover around the 60-70% mark - but even so that shows 2 things - I am improving (I never used to get anywhere close to only 40%) - and even with that my paceing needs more work
edit 2 - rambling and nearly vearing off topic again - it's late - I'm over tired so cant sleep - sorry Jody
That's probably (in my humble opinion) why you've been ill so long. Hand on heart, I promise you the best thing you can do is get the Mitochondrial profile test from Dr Myhill (who I don't speak for btw - she's a really nice, reasonable person with an open-minded approach and attitude.. I'm just a Type A over-achiever who needed a kick up the arse to get myself back on track..), and then just follow the advice you get TO THE LETTER, and at least stick with it a year or two.
75% better (as I'd read it - and I'd totally agree) would be when you're functioning at about 75% the level you'd have expected to when you were in good health, prior to CFS. (The disability scale's just a diagnostic criteria - not an attempt at a recovery scale. I find recovery tends to be exponential - so it's always likely to start off slow and very gradually pick up pace. Getting from 75% well to 99% well should be the easy bit.)
So yeah, you'd be able to hold down a full-time job, go shopping, go on holiday, but probably need to take it easy and rest properly if you start to get warning signs coming on. I only joined this forum because someone was describing how he got himself to that 75% better point, over and over, and kept relapsing... Why? Well as soon as he felt better he was going on 10 mile hikes and lifting weights.
PWCs have *great* attitudes, when it comes to being worldclass athletes, business owners, entertainers, etc. but we're terrible at taking a step back, making life as easy as possible for ourselves, and just waiting for the body to heal naturally... Not only am I naturally terrible at this, I'm sure I sabotaged myself over and over before I got the message. (....Hook yourself up with a good specialist and just take everything they say as gospel, because as far as getting better from CFS goes, it will be.)
A good rule of thumb for all (in my opinion) PWCs is to gauge everything you do by symptoms. If you're fatigued: do less. Not just today, but in general. I needed a pharmacy worth of supplements and a year of watching TV and eating like a Tibetian monk just to get me symptom free at rest, a lot of people don't need that. Stabilization period. Keystone of recovery.
Wonko and Mike,
Might it depend on WHICH 75% is functional?
This may be a variable that is much affected by what the individual's main symptoms and dysfunction are.
In my case (okay, I am not off the bunny slope of weight training and likely never will be) but I'm gonna use myself as an example anyway.:Retro tongue: -- I have had times when I could do alot physically, be fairly active and busy most of the day, but my cognitive abilities and stamina were crap. I couldn't think beyond really basic stuff like making a grocery list, getting errands done, etc. A great stride forward from where I'd been but still deficient. And I'd have said I was well below 50% functional, but the old body was working fairly well at that time.
Other times, like this past year, I have had far more cognitive restoration. I can sit and type for hours. Mostly making sense. But a drive to visit our son and daughter-in-law in a city an hour away (and I was the passenger, not the driver) left me buzzed out and fogged up for the whole evening with them. By the time I got home later I felt drunk and out of it. And ... I wasn't. So the brain is doing better and making more strides but the body ... not so much.
So ... depending on the areas of weakness and dysfunction ... maybe the 75% thing is up for grabs?
Wonko, if it's working for you and has been for some time, I think that may be the best guage to follow. And then, maybe you two guys have a different picture of what 75% is.
that sounds more like it Jody
a lot of the time my main problems are with cognitive issues - environmental processing, dealing with people, day to day thinking etc - these are my primary short term limitations as they can drain energy at a rate which leaves me near totally unable to function in minutes if the environment is hostile enough (primarily moving things, people, people taht move are particulalry bad lol - also questions like "how are you" completely muck me up - I survive by not thinking about such issues much - DWP/DLA forms are particularly torturious/draining.fog inducing)
unless we are talking sheer stupidity then physicality imposes a much lower price - unless I am already crashed - I can cope with non severe pain, I can cope with nausea, I can cope with being weak, lack of stamina, all the other little things tho I'm still very limited compared with a normal but it isnt my primary deficit - if my brain is functional I can cope - tho I'd never go as far as describing myself as fairly busy lol - doing a couple of items of tidying (hoovering, washing up etc), cooking and using the net a few hours a day is as busy as I get - if I add in another activity such as lifting or shopping something else has to go
unfortunately you need both cognitive ability/stamina and physical ability/stamina to function in the real world - ie outside - which is why the lack of one disables me more than you might expect
not totally off topic I suppose - as an idea of how M.E. affects me vs others is relevant - but close
edit - I'd actually ascribe the reasons for your evening out having a negative effect as primarily cognative - people, moving objects, talking people etc - not just physical - but we're all different and you would be able to tell the source of drain better than I :innocent1:
I have totally got you scared about the going off-topic thing. Sorry about that.
What we're discussing here is relevant, for those who may be wondering how to tell whether it will be safe for them to do this type of workout. So, a conversation about what symptoms we have, which ones seem to make exercise a bad thing, and which ones don't seem to make a difference ... all relevant.
Now, if we were to get into a two page argument over whether your opinion or mine was valid ... that might pose a problem. We'd need to get back on topic.:Retro smile:
Now you've got me thinking on it ...
Many threads will meander on and off topic. Some of my favourite ones have been quite circuitous and have touched on everything under the sun. But they didn't need moderating because people were happy with it. They were enjoying the thread, and were in accord that they liked the direction it was going even though the direction had ... changed.
This is no problem to a mod.
An even if we disagree about a topic, if we are able to have a conversation about it, interested in each other's views ... that is not a detriment to the thread. Ultimately it is finding ourselves in an argument, especially where each side is entrenched, nobody is listening to each other any more, and the only points being made are adversarial and personal ... that is really the main thing that will require moderating.
You haven't done any of that. No need to worry any further.:Retro smile:
So what it boils down to is,
As long as people are happy on a thread, we mods are fine with that, whether the thread veers off topic or not.
When things go sour, one of the simplest ways to try to bring some balance back, is to bring the thread back to its original topic.
With this thread, more than lifting the actual weights could come up and definitely be quite appropriate. Talking about the weights, about diet, about other exercise, about pacing and resting. About cutting out other activities to make room for the new weight lifting.
Talking about how you feel about all of this. About when it goes right. When you crash. Worries about whether it will end up being too much. Jokes about weight training.
Lots of things are a good fit here. Plenty of things I haven't even thought of. But you might.:Retro smile:
See what I'm saying?
yep - think so
not even going to consider trying to lift even an empty bar for a few weeks - need recovery time - tried a quick hoover earlier and the experience wasnt (and still isnt) much fun - wasnt too bad on the sofa earlier but try and do anything.........unfortunately it's approaching feeding time and there's just me (and the cat but she's useless at cooking)
You have a good point here. Yeah, it's the neurological aspect -- which in some ways is cognitive and in some ways is physical, eh?
But yeah. If I had been out in my garden, or going for an hour - long walk, or doing housework or something ... those would be clearly physical, and not cognitive ... and those I could do.
So ... that middle ground, which is not as strictly cognitive as writing an article or an email would be ... but is not just physical because of the cognitive aspect you mention -- that's the one I have the most problems in. It is where the cognitive and physical meet.
Huh. You just opened up a brand new category for me. It may help me as I try to continue getting myself sorted and recovering. :Retro smile:Thanks.
This is the only weight training that PWC's should be doing. (I'm actually a black belt holder in this).
Exercise for People with Fibro and CFS
Begin by standing on a comfortable surface, where you have plenty of room at each side.
With a 5-lb potato sack in each hand, extend your arms straight out from your sides and hold them there as long as you can. Try to reach a full minute, and then relax. Each day youll find that you can hold this position for just a bit longer.
After a couple of weeks, move up to 10-lb potato sacks and repeat exactly as for the 5lb potato sack
Then try 50-lb potato sacks and then eventually try to get to where you can lift a 100-lb potato sack in each hand and hold your arms straight for more than a full minute. (Im at this level.)
After you feel confident at that level, put a potato in each of the sacks.
Are we allowed to eat the potatoes by that time?:Retro tongue:
Liverock did remind me of something I used to do though.
I used to have very bad tendinitis in my shoulders and arms. My chiropractor at one point suggested that I get an empty jug -- don't remember how big they were -- a few Liters maybe?
I bent over at the waist, holding this empty jug by its handle, and very slowly rotated it in a circle. Did this a few times a day.
My doctor pooh-poohed this saying it couldn't possibly do any good. But it did. It was passive exercise that helped gently stretch those muscles. And it was light enough that it didn't hurt me. Eventually it made enough difference that I could take the next small step.
Empty potato sacks. Empty jugs.
Whatever works.:Retro tongue:
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