Discussion in 'Lifestyle Management' started by Scavo86, Mar 22, 2010.
just make sure not to lock your elbows :innocent1:
okay not sure how relevant this is or even which thread to put it in as there are 2 possibly 3 dealing with similar issues - I'm putting it in this one as as this is the one I've contaminated the most those who dont want to hear from me are probably already ignoring it
I appear to be comign from a slightly different place than most - apart from as idele speculation I'm not interested in "recovering" from M.E. - I stopped hoping for a cure a long time ago - I stopped hoping that taking x suppliment or that wearing blue socks for 142 minutes on a tuesday mornign was going to somehow magically make me better - at some point reality has to take precidence - I'm sorry if that offends those of you that still hope - I wish you luck - i really do - but in my case I've tried enough to know that nothing I can sustainably afford will make a difference -I dont have the luxury of absolute pacing - I dont have the luxury of someone else to pick up the slack I cant do - I live on my own - M.E. (and my reactions to it) have taken my marriage and my friends - if I dont do something important then it doesnt get done
so I dont concentrate on getting "better"- even if that was possible I'd starve if i employed the techniques some of you seem to be able to - or at least advocate
I concentrate on being as functional as possible as much of the time as possible - if this means I have to exceed whats safe/advisable then so be it - I try and maintain at least minumium functionaity - the abilty to stand (even if not upright and unsupported) is handy - the ability to hobble bouncing of walls and furniture (anythign to get me from A to B) is also quite handy - I attempt to make sure there is alsways at least 3 months of supplies here - of different types - from stuff to cook if I am up to it to essentialy instant meals
and I'll take being 40% functional and actually being able to live the way I choose over being notionally 60% functional at the cost of doing nothing or being dependant on others (some hope there lol) to preserve that 60% any day of the week - as I said - I seem to be coming from a different place from some of you - I've just read that back and released it coudl be construide as offensive - I'm not critising - far from it - but I dont have the support structure so it just isnt an option for me - I cannot - as has been suggested - just take a year off and find a level with no PEM - it's not possible - we each work with what resources we have - mine dont allow that approach
over the years I've come up with a few little tricks to get more out this diseased and broken carcass I call home - eg it's amazing how useful blind panic coupled with anger can be when its needed - I've learnt how to manipulate cognative drain a bit - how to manipulate the brains inbuilt enviromental filters to my advantage - it all helps - ultimately as I'm sure your thinking it makes things worse - some (but not all) of the time it does - but it allows me to survive the immediate situation and because of this I'm not just willing to - I have to - and I pay the price when I can afford to - once I'm home
not strictly relevant to weight trainign but it's an attempt to give you an idea of where I am coming from - what possible rational I may have had when I undertook somethign that by it's very nature should have been extrememely damaging - whatever I'd read that suggested it MIGHT be ok for some I was aware of the risks, took precautions so I wouldnt starve/freeze if it went wrong - and informed my only surviving friend what I was upto
something that could increase my functionality in extreme situations (eg in a town centre with too many people in it) has to be tried - it's the difference between making it home and not - or rather the difference between doing something necessary and not doing it - the difference between being helpless on the ground and being able to stand and move and get myself home - albeit causing a crash when I get there - I'm truely glad for you if you cant understand this and think I'm either stupid or that I cant have M.E. because of it
given whats been posted about anaerobic exercise producing large amounts of lactic acid - if thats definately the case then I'm not exercising anaerobicly - as I get no burn from lifting - none at all - I used to (in my late teens was the last time I lifted) - I get muscle burn from shaving, from just sitting, from a whole host of not particularly demanding activitys - I dont get it from lifting - go figure
until I lift heavy enough for my form to collapse, or if my form is bad from the getgo - then I can barely even feel the weight - which is why i posted a while back if it feels HEAVY then dont lift it - somethings wrong - stop and reassess at a minimium - not that I make a habit of liftign that heavy - i've done it a couple of times - to find out what my absolute limits were - I'm a bloke - we're stupid - i paid for it
in summary - weight trainign wont "cure" M.E. - it wont affect M.E. much at all - if anythign you might have to drop the odd activity to maintain a balance whilst lifting - for a lot it would be a serious mistake - for those it wont damage it MIGHT if done sensibly improve both your QOL and your ability to function in more hostile environs - MIGHT
it's come to my attention whilst reading the personal sections/stories in this forum/blogs that my way of thinking isnt normal for those with M.E. - tbh some of my attitudes as reflected in what i've posted, whilst true, were a shock to me - after havign given it soem thought I've come to a conclusion - most of you still hope - your basic emotional state (as portraide) is positive - mine isnt - my primary emotional drive seems to be fear - the fear that things will get worse - and my life is a constant and ultimately fruitless (as I have no control over things like NHS and DWP policies) battle to stop that from happening - I've been there, I've been totally helpless - it's not happening again - I'll do anything to try and avoid things getting worse - take any risk I deem can be managed - doing nothing on a sustained basis isnt an option - I've tried that - things get worse - I'll put up with practically any negative symptoms as long as I can maintain basic functionality to stop that from happening - I dont care if somethign hurts as long as it's not a type of pain I know causes crashes, I dont care if I feel like cr*p as long as I dont get into immune collapse, I dont care if I cant stand up straight due to all my muscles on one side having locked or stomache pain - thats not me - i'm me - I just happen to live in a body that doesnt work
sorry if thats inappropriate - or if people feel it's self indulgent tripe - as I suspect few i(if any) are reading this and I dont have any other means of expressing some thiings........
......feel free to ignore me
I'm sorry about my writign style - the fact that I tend to ramble etc - my thinking isnt particularly organised - I have signifcant short term memory issues - which is a blessing in some respects - but not helpful when tryign to communicate
I've probably missed loads of what i wanted to say but this post is already too long and I refer you to my aforementioned short term memory issues :innocent1:
recovery is a lower priority than survival to me - I'm glad that others can concentrate on recovery but I dont have that luxury
I've been realizing recently that my priority has changed a bit.
For a long time, recovery was my sole priority. That was what would make it possible for me to work, that was what would give me a shot at being able to build a life again.
But since I have been able to do freelance work and am making some money again, my focus has shifted.
My main priority right now is being able to work. I do it from home, it's only part time, when I am able to do it, I basically choose my own hours. This is a good job, like it was made for me. I will do whatever it takes to be able to keep working. Cut out anything that might get in the way of it.
Because at this point, the way I see it is, being able to work and earn money is my priority. As long as I can do that, and if there are any chances to increase my work and my income ... that is ultimately what is going to aid in my full recovery.
So if the total rest and regeneration has to get shorted a bit so I can continue to earn money, so be it. Some final security (eventually) and being able to pay my bills and not be worrying about them all the time, being able to keep healthy food on the table, and to be able to afford the supplements that I know make a difference ... these things will help to make me well.
And once I've been able to earn some of that financial security ... then I will be able to focus more on that total recovery again.
And lately I am looking at working out in the same light. Now that I am able to do it again, it is worth the small setbacks that may come, in order to increase strength, flexibility, stamina. Now, I'm not talking about the kind of workouts you guys are talking about. Mine are laughable by comparison.:Retro tongue: But they are a start for me.:Retro smile:
By increasing strength, flexibility and stamina, I will find that it takes less effort to get through a day. Less effort to walk down the hall, stay on my feet, do the dishes, get up out of a chair. The endorphins improve my moood, I feel better. These things are also part of recovery.
We get 'em in whatever order, in whatever places of priority, as we can, as what works for us in our given situations. When our situations change, the priorities may shift. At least, that's what I have found.
I think you make alot of sense. I think it sounds like you are managing to make enough things work to be able to have something of a life. Not to be dependent on someone else. Or, from what you describe, having nobody else to be able to depend on, you manage to take care of your basic needs.
There can't be any recovery without survival. You are making sure you survive. This makes total sense to me.
As for those who think they can judge whether someone they don't even know has ME or not, forget about them. We do have some of them on these forums but that attitude they toss out isn't welcome here and we will always try to get them to knock it off.
We all get enough of that from the rest of the world, we don't need to be turning it on each other.
I do know other people who have had to put recovery aside in order to survive. Some of them live outside, in draining types of situations. Some work full-time because they have to, and sleep the whole time they're home, in order to be able to go to work again the next day. You name it, it's out there. You are not alone in your survival grapplings. You really aren't. You are part of the ranks of an honourable and brave group of chronics.
Your writing style is fine. You express yourself very well. Keep writing.
You had me going there for a moment...alright, you got me hook, line and sinker. :tear:
Many thanks for your kind comments - I was on the work/sleep/work ride for a while - eventually I fell off
still maintaining the unassailable brevity eh?
if I'd heard a year ago of someone with M.E. who said they could lift wieghts the way I do then I would have said "probably doesnt have ME" - I would have thought "pull the other one" - so I understand your position - that doesnt mean I have to like it
unless it's something else I've said that makes you think I dont have ME - if it is please share - I'd love an alternate diagnosis - preferably something cureable if you can manage it - am I mad? just a pathetic malingerer? perhaps I have chronic fatigue or a sleep disorder and a little light rest will cure me?
I appreciate your not medically trained but anything you can say could give me my life back
or to put it another way
what apart from anger, loss and disbelief drives your disilike of me?
I don't dislike you, I don't even know you.
Health professionals read this forum, you saying you've got the same disease as me and saying you're able to lift 120kg and do weight training makes people like me look like a malingerer, I've hard a really hard time in the past, I was denied IB when I first became ill and DLA lately because the doctor who examined me didn't believe me and lied on my report, maybe it's because they read posts about people with ME doing weight training and lifting 120kg. If the apeal went bad I'd have been screwed, I'm really ill and I can hardly do a thing lately.
You say you get DLA and IB. If you told the DLA people you could do weight training and lift 120kg you'd get thrown off their books. I saw the post you edited too, the one you edited to say you could only lift 120kg for 1 second.
Have you read any of my posts in this thread?
Nobody said Wonko's got the same symptoms as you. None of us know if we have the same disease as each other. I think it's more than been established that there is more than one type of illness here and we are all free to talk about what we have. Whether it's what you have or not.
You don't have to believe Wonko. You don't have to believe anybody who's posted on here about being able to lift and finding it beneficial.
But you do have to stop insulting people. I have had to tell you this a number of times in the past few weeks and I am getting weary of it.
Knock it off.
We're all so different. I usually have lousy stamina but even amongst my healthy friends I'm uncommonly muscular and would probably life more wieght than they do... As long as my arms weren't flailing around and doing their own thing at the time.
Despite that I'm mostly homebound and despite huge efforts largely incapable of verbal conversation and understanding the world. Various visual combinations can literally knock me off my feet, I've terrible MCS, it's very rare i can speak on the phone and then only for 5 mins or so, once a week. The last time I had a social visitor was my Mum on Boxing Day.
Until my health improved a bit recently my husband hated leaving me alone. Yet due to various symptoms that people either can't accept or accomodate i can't be inside with anyone except him.... And to be fair it's close to impossible to accomodate my symptoms.
Recovery from my DLA visit took 8-10 weeks and well over 1/2 his report was lies. Yet he saw me sink to the floor the more he spoke, saw me become paralysed, be helped to the floor shaking, weeping etc etc He looked alarmed and almost ran out of my home. He told my husband 'I hope she gets better for you'.
A long way of saying symptoms are very different and the DLA probably has it in for most of us that have a full complement of limbs :-(
@Knackered - I dont get DLA - and yes I've had doctors lie on reports - from such things as altering distances after the form had been signed and they left the flat to saying ME has no impact on my life and then lying to my face about it until I produced the proof from my appeal documentation ad then justifying it by saying she never saw me so how coudl she rite anythign different - you never se me coz I'm housebound most of the time you stupid woman (i crashed around abotu the time of the appeal and you know how short thess deadlines are and how inflexible they are)
I've had 1 doctor say that I took 10 minutes in obvious pain to walk the 20 yeards from a waitign room to his office but then enter I coudl walk 400 yards on the computer - the whole things corrupt - doesnt make it my fault - doesnt mean I shouldnt pass on my experince to those considering training - tho I will conceed putting the actual amount I can shift may have been rash - my only defense is that I'm proud of it - I've worked damn hard and endured a fair amount of pain/discomfort to get to that point - I came from barely being able to get off the sofa - tv times being too heavy etc. (tho not immediately before I started lifting) - and as i've pointed out several times those max's are damaging (crash inducing) and arent what I generally lift
I think you need to watch a video of a deadlift and time it - it's about 1 second - I was clarifying not hiding in that edit - it's lift from mid shin until your standing straight - your arms do nothing apart from hold onto the bar - and then drop (if needed) lower if possible - the lowering bit isnt part of a deadlift
having read your intro posts we do have something very similar - at leastin the background physical side of it - not the same - I wouldnt describe my background as flu like - achy muslces and joints, locally raised and dropped temps over vary area's(sometimes within a couple of inches lol), headache etc - you get the idea - but not flu - at least it's dissimilar enough so i can tell when I have the flu as opposed to "just " normal background ME - but thats only happened on 2 occasions in the last 10 years and 1 of them was by jab - yep - I used to trust doctors
however I am pleased you dont actively dislike me - I'm not sure if I could survive that :worried:
edit - for your info:
thats basically a deadlift - tho the form isnt quite right IMO - I did 1 with that weight which shall not be mentioned - thats once up - once down
Your point is really important, I think. All of us have symptoms, they are not all the same though. In fact, my symptoms are not always the same.
Some years, my main challenges were very physical, being able to stand up, being able to walk, being able to make my fingers work.
Other years, my body has been good, but my cognition was ... bizarre and pyschedelic. Talking was out for awhile. Couldn't understand what was said. But I could read.
Other years I couldn't read but I could knit. One year my arms were too bad to knit .... and so it goes.
In the summer I seem to do better. If I start very small, like one crunch, one squat and then nothing for a day ... then up to two, and a yoga stretch ... then rest ... within a few weeks I can be safely doing half an hour of gentle exercise, and 20 min. of light weights, plus a couple half hour walks thrown in. And I will physically feel pretty good. Cognitive stuff still in the way. But the body is good.
I'm pretty big but look a lot stronger than I am - a significant amount of my problems are also with issues dealing with people, intitating communications etc - so whilst I'm no where near as affected as you i can empathise
I suspect I'm just a tiny bit autistic which may explain why I find people so draining - but it's not just people - it's anything I have to process visually or listen too - but i'm runnign with the autistic thing coz it's simpler :ashamed:
but the point of this post is to both let you know there are people who can at least empathise with what you are going through and to thank you for yours
Yip I think I get this. I love people I love finding out about them, their lives, their views, but even the sound of my own voice can cause me awful neuro brain pain. Other voices, body language, movements...Aaaah
I can see a particular visual, say a ditch or a particular road or house arrangement and my neurology goes crazy and I become immovable.
MCS triggers lots of my neuro horrors.
BTW I'm smallish and surprise people with my strength. Never lifted weights. When I'm able to I do physical things like putting up shelves, some heavy gardening etc, (infact I'm strobnger outside) but finding this thread interesting.
I do some light yoga which I feel works with my core strength... I think. But with my power thighs I was probably built for the squat(?) lifting they do at the Olympics etc LOL
Agreed Jody, my symptoms vary enormously too. Though the extreme brain stuff started with a tiny incident 5yrs ago and though improved in the last year it's still a world away from where I'd like to return to.... Which was still tricky... perhaps somewhere like Wonko is now???
With summer on the way sounds like you'll be moving in to an exercise phase
I've read most of the thread but haven't taken much of it in, so excuse me if this has already been said, but are you lifting weights mainly to improve muscle strength?.... And is that so that you have the strength to do more physically and lead a fuller life? Or?
Just asking becuase i really wouldn't want more muscle, save perhaps better abs. And power wise I don't feel I need more...... Perhaps in part that's because I'm so focussed on regaining brain/neuro function, also lung and CV.
I know many PWME lose weight, muscle and/or power but somehow and despite PEM since age 10, and later harsh pacing etc, I don't seem to have the muscle loss problem.
But I enjoy keeping moving and doing what i can safely do. Keeps my lymph and blood flowing. Plus I'm a very physical person and I like the feeling of movement, stretch, lifting etc
yes I lift primarily to increase muscle strength - I'm not interested in size, shape etc (I'm not into bodybuilding) - only strength, function and flexability - this has in my experience some secondary benefits with regards to general QOL - I'm assumign because the muscle is stronger and more flexible less damage is done (at least proportunately) in everyday activities - a whole host of things seem to be affected - exactly what the mechanisms are I dont know - I've only got personal experience and what I've read - and there is a lot of hype and bad/inaccurate pseudo science out there with regards to lifting etc.
I have noticed that my recovery time has gradually decreased - this could be down to slightly improved sleep, improved sleep disapline, better diet, the odd suppliment I take - a whole host of things - it may not have anythign to do with the lifting persay - and more to do with the changes I have had to make to make lifting possible
take today as an example
I've been in a state of mild to moderate crash for a few days now (okay a week+ I try not to think about such things lol) - a while ago my fridge broke down and I need a fridge or I cant maintain anythign like a sensible diet - ie it's important for recovery - yesterday I managed to borrow a small fridge - typical small under counter job - weighs maybe 15kg - unfortuantely I live in an upstairs flat and only 1 guy turned up to deliver it - so I had to help - i was on the top basically just steering - he took most of the wieght - after a few steps i can barely hold onto it - but I need it so it's got to be done - after a few more my motor control has gone to the extent I'm bouncing off the walls in an effort to lift it and I'm not sure I'm not both tryign to lift it and using it to hold me up - by the time we get it in I cant stand without holding onto something - after 3 hrs ish intensive sofa time I gather the energy to turn it on
today I have stomache cramps - feels more like a hernia than cramps - whenever I change position, ever joint aches, legs are aching, hot and cold, headache, neck is barely able to hold my head up, I'm sitting/lying in a darkened room coz I cant take the light, sitting doesnt just make me nauseous it's painful, it feels like someones driven a pole through my chect and my lower jaw aches, my legs feel like achy jelly and can barely hold me up - the tv is sometimes too much processing so it's off most of the time - I can stand for long enough to make a drink, sandwich but the thought of standing for the 5-10 mins it takes to make porridge is overwhelming etc. etc. - this is what i would call a mild crash - I'm still functional just not comfortable
a few weeks ago i could lift 40kg up those stairs without breaking a sweat or any signifant PEM - now at most 7kg is near impossible - whats caused this? - a few days outside havign to deal with a hostile enviroment (not lifting as that was stopped over a week ago) - followed by somethign that whilst inadvisable needed doing
but, and this is only my subjective point of view - I dont believe yesterday would have been possible without the additional margin lifting has given me - in fact I believe i wouldnt have been able to complete what needed doign the week before - i may be crippled but it would have been worse without having built up a reserve beforehand - only my point of view - I cant prove it
from 40kg with no cost to 7kg with a high cost in a matter of a couple of weeks (probably sooner - I have after all had a few days recovery time before attempting such lunacy) - caused by activity a normal would consider as relaxation (sitting and talking + of course the associated travel) - but it's not as bad as i expected - so for that i am grateful - even if it does mean I wont be doing much for a while
so why do I lift with regards to M.E.? it's my belief that for myself it makes my QOL higher when i am ok and gives me more margin for error/stupidity once a downturn begins - it's that simple
M.E. caused by deconditioning and treatable/cureable with exercise? pretty sure I'm a damn good arguement against that old chessnut
btw squats work all the main muscle groups - not just thighs
I'm hoping to be moving slowly into more exercise very soon, yes.:Retro smile:
I tend to do better as we get into summer. Spring can go one way or the other. I've had some horrible spring seasons. But this year seems to be heading in the right direction.
The little bit of weights I do is for muscle strength and the greater energy it paradoxically brings (during time periods when I am in better health -- it does NOT do that when I'm really sick and must then be avoided like the plague).
With the little bit that I do, and with the kind of shape I'm in, I don't think I need to worry about getting too much muscle.
Ok that's interesting. Thanks Wonko, hadn't occured to me in that way.
Now I've heard your story I realise that I'm more freaky than I thought. I’ve had stretches of months where I couldn’t stand up to shower, spent most of my time crawling rather than walking and once downstairs in the morning I stayed there til I crawled up to bed in the evening.
I’ve had many days when I couldn’t use utensils or when meals were taken bobbing up from the floor to get an apple etc from the fridge, then propping myself up against the dishwasher to eat it.
I remember one day lying flat out on the landing, feeling the pain of my skin straining to hold its contents, wanting to slit it open with a knife, so that it’s contents spewed out and my skin released from it’s mamouth strain.
But I still had decent muscle size and tone and though I guess I must've had some wasting it didn't noticabley affect my function or QOL as I came out of these episodes. OTOH when I’ve had stretches of doing heavier work, muscle tone and size increase.
Great things are heading the right way this Spring. I often do well in Jan, Feb and March but not this year.
Fascinating that weight lifting gives you more energy.
Now I'm half wondering if that should go on my 'to do when there's spare energy' list
I would imagine most with M.E. have had bad crashes lasting for months which have left them almost totally bedbound willow - fortunately my last episode that bad was over a decade ago.
so your not "freaky"
I must admit that whilst I have and do get unusual and even painful (tho mostly just intensely uncomfortable at worst) skin sensations I'm releaved I havent had the sort of experience you describe and hope it was a one off
it is puzzling how, after a crash which results in severely reduced activity, recovery fitness levels can remain broadly the same but it is something I have noticed as well - I'd guess that having to work so hard to get anything done despite the weakness etc. keeps the basic fitness up
Ooops I wrote that badly Wonko. Sorry, how confusing!!
When i said that I was more freaky than i realised I meant that the contrast between my physical strength and mental function is so huge. Wanting to slit my skin open was a one off thing, but it was as if my skin was beyond exhausted from having to hold my body within it. Yet then and usually I feel awful if i stay in bed, much better for me personally to move, crawl about if i have to. Only a few days a year would I feel better to stay in bed and then it's almost a relief
....That might sound ungrateful, but it's relief that my body is happiest and benefits most from lying down. That I don't have to drag it around to keep my muscles moving or lymph flowing or whatever it is that benefits me from movement rather than stillness.
Like you say many people crash badly and end up in bed for months or years, then with awful muscle wasting etc and need to gradually recondition themselves. Perhaps I should donate some musle tissue to ME research
That's all I've thought of too
I'm off for fresh air, might get the brain cells working better
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