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ADAMB170
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« Reply #25 on: July 24, 2011, 02:08:49 PM »

Hey Roger, do I have classic cfs/me? i've absolutely no idea.This is one of my biggest problems.Ive been through 3 years worth of medical tests which have all come back negative so eventually a rheumatologist diagnosed me as having some form of a cfs/me, post viral syndrome type of illness (you can imagine the problems such a wishy washy diagnoses has caused me).Personally I find reading/watching tv the most relaxing way to spend my time.Believe me doing absolutely nothing but being left to my own thoughts brings me far more stress than losing myself in a good book/tv programe.Seemingly spending 24/7 in some kind of medative state is the only option lol.Sorry if all my posts so far seem so negative, perhaps if I was in a period of feeling ok my responses would be more positive.Thanks again for taking the time to speak to me, Adam
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roger
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« Reply #26 on: July 24, 2011, 02:28:11 PM »

Hi Adam,

Download the book – I think having read it, you’ll have a pretty good idea whether or not you have CFS/ME. If still in doubt, you could always consider the mitochondrial test.

But let’s assume for a minute that you DO have CFS/ME – yes indeed, being left ‘with your own thoughts’ when you’re ill is indeed stressful because those thoughts are likely to be negative. That’s emotional stuff.

It depends on severity of the condition, but for many CFSers, watching TV/reading, whilst seemingly relaxing, is extremely mentally draining – with TV visual and audio signals all needing to be deciphered and put into a comprehensible order, with reading, the eyes have to transfer squiggles to the brain, which in turn has to sort them out. That’s mental stuff.

It’s important to be aware that mental and emotional effort is as important as physical.

Meditative music or led meditation/relaxation sessions can be useful.

Finally – nobody with CFS/ME knows for absolutely sure that that is the problem – it’s an educated guess from a medic who can’t come up with anything else. But until he can, we have to accept the diagnosis and act accordingly – that or be ill forever.
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roger
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« Reply #27 on: July 24, 2011, 03:31:34 PM »

Thanks for that, oxo - the trouble with GET is that it takes little account of severity in each individual case. Sure, we do EVENTUALLY need to gradually increase activity, but only when the individual mind & body are ready, and then at the pace the body dictates, NOT at the pace some physio or GP with no real knowledge of CFS dictates.

I do sometimes wish some of these 'professionals' could have severe CFS symptoms for a while, then we'd see just how much notice they'd take of their own advice!!
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roger
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« Reply #28 on: July 24, 2011, 03:43:41 PM »

Unless severity is very mild, oxo, it always is! And what's worse, when you fail at GET and get that contemptuous look from the medics, you feel guilty!!
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roger
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« Reply #29 on: July 24, 2011, 06:37:39 PM »

Well now you know you don't have to beat yourself up about it, oxo  Smiley
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carrie
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« Reply #30 on: July 24, 2011, 08:11:14 PM »

Unless severity is very mild, oxo, it always is! And what's worse, when you fail at GET and get that contemptuous look from the medics, you feel guilty!!

I have had this experience and it is not good at all, they just wont accept that if GET doesnt work it isnt that you are not trying hard enough
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pickle
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« Reply #31 on: July 25, 2011, 10:28:29 AM »

Quote
It then made me very wary of following their advice unquestioningly.


Always a good idea!
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sulamaye
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« Reply #32 on: August 07, 2011, 09:24:51 AM »

Hi Roger,

This pacing business is a laugh isn't it? NOT. Some help please oh great one. For the last 3 weeks I've done very little - I am so bored of counting my breaths as I meditate I'm about to explode - and I've just felt worse and wose and worse. When I first ground to a halt in March I had that completely unplugged feeling, like there just was alomost no energy in my batteries (which is why Dr M's mitichobdria theory makes so much sense to me!!) then as I rested because I couldn't get out of bed I started to feel that less but an array of simpkins (symptoms) arrived - the tingling, thrumming, adrenalin, sugar crash but not sugar crash etc etc - an dteh unpluggedness moved to that constant ME tiredness. Well the more I lay around doing very little, computing for 15-20 mins then silence again, radio for half an hour then the dreaded counting breaths again etc I got worse until the unpluggedness actually cam eback. I've been despairing as my accupuncture was making no difference etc until Friday when I said just to the treatment you gave me at teh beginning and now I have a little more energy in the cells - but Roger I am worried that I am never symptom free, and that lying around has made it worse - perhaps its just made me even more aware of my simpkins? or perhaps not doing anything has made me worse? Helpppppppppppppppppppppppp Ah but I have to say I also think I've been fighting one of my daughters colds - its imposible to avoid infection with a 5 year old!

Okay - calm down Sula - let me just say this: Say I was fighting a virus and that's what made me worse? Do you really think if I just carried on with teh retsing regime I would get symptom free? Do you think that is true? Or do you think that if I hadn't adressed my CoQ10 etc for example then no amount of resting is necssarily going to get me simpkin free? Do you think I could be autosuggetsive, do you think some simpkins just arrive because you've heard someone else talk about them? Perhaps I'm getting worse using this site? I'd never had digestive trouble until my yoga teacher asked me if I had when taking my medical history and 2 days later I got stomach reflux??

I repeat HELPPPPPPPPP (sorrry I'm not really as barking as I sound, although I do think being a bit barking is necessary in life!)
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roger
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« Reply #33 on: August 07, 2011, 10:06:11 AM »

Hi Sula,

First, I hope I’ve not given the impression that it’s easy – just rest a bit and you’ll be fine – because it isn’t, and Pacing is PART of a regime, albeit an extremely important one.
And you don’t sound as though you’re barking, you sound frustrated, and that’s perfectly understandable.

Okay – three weeks is nothing. I followed a strict regime for almost a year before improvements started to materialise, and that was without the responsibility of a small child to look after.

A couple of things strike me from your post – I’m not sure that you FULLY accept and understand your condition. By ‘accept’, I don’t just mean, ‘Okay, I’ve got CFS’, I mean accept the situation in a positive way, accept that it sucks, but without anger or frustration, and accept that you’re going to have to do certain things, possibly for a long time, if you’re to have any hope of serious improvements. The second thing that struck me is that you say you’re bored with ‘counting your breaths’. This indicates a view that the process is irritating and that you’ll approach it with ‘I suppose I’d better do it but I don’t really want to’ thinking. You need to change that – these techniques are your friends, so you need to treat them as such – each relaxation, visualisation or meditation session is one small step towards recovery – think of them in that light, and treat each small step as a step towards your goal. But you don’t have to just ‘count breathes’, you can add variety by concentrating on something else, or via a nice visualisation session, or a guided relaxation session...if you have a few MP3s, get some more; add variety. The key is though, that you must do these things in a positive frame of mind. If you don’t, they’re pointless.

I don’t want this post to be too long, but briefly, I believe that the body is perfectly capable of healing itself with mimimal outside help, but to do so requires a very deep belief, and most people can’t easily develop that belief. So use the outside help if you believe in it, keep taking the Q10, along with anything else you believe your body needs. And yes, CFS/ME breeds hypochondria and things you hear about can materialise and create real symptoms. Any new symptoms should always be checked out, but if tests come back negative, you have to accept that and that hypochondria is part of your illness.

If any of the above makes no sense, or if you have a particular issue that’s problematic, either now or in the future, feel free to PM me. I’ll help if I can.

Above all – BE POSITIVE!!  hug
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sulamaye
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« Reply #34 on: August 07, 2011, 11:38:42 AM »

Thanks Roger - I probably sounded more frustrated than I have truly been in approaching meditation etc because I've got worse not better over the last few weeks. I deffinitely started meditation with the view that it was positive, regardless of my illness I think meditation is positive - but it does get dull to do very little at all, even think because thinking for me is creative, but obviously takes energy too! So I can see why you think it but on the whole I have accepted my condition pretty well, and I'm pretty positive too - but I think everyone must find that when you feel you've been taking the right approcah but you just slip backwards regardless it does make you feel despondent that day and also frustrated and mystified. I keep picking myself up, but come back here for a bit more guidance when I get lost or fedup.

 c017
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roger
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« Reply #35 on: August 07, 2011, 12:35:30 PM »

Yes, sula, that's understandable, but the picking yourself up bit is the key - every time you do that, you've taken a step forward.
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mins mum
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« Reply #36 on: August 14, 2011, 10:23:09 PM »

Roger,
You have a fantastic way of putting things into perspective, a really good bedside manner and a wealth of knowledge. I have read many of your posts and I thank you for all the time you have obviously put into this. Pacing is hard,I feel its the wanting to run before you walk due to the euphoria of being on your way to being "normal". Pacing is so terribly hard, not to be under estimated and definately to be taken with great self control and honesty. I think the most important thing is to be positive and realistic, not expect too much too soon and then you are less likely to fail. At least this illness allows for variety, variety of treatments, goalposts and aspirations etc. If you have a lucky teddybear, breathing techniques, religion, supplements, whatever you choose to rely on, its a key part to your success  and keeping your spirits up.
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roger
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« Reply #37 on: August 15, 2011, 05:52:46 AM »

Thank you, MM, and I totally agree with all the points you've made. You'd think pacing would be easy. It isn't.
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jaylfc88`
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« Reply #38 on: June 07, 2012, 12:57:48 PM »

The best pacing post I have ever read, thank you Roger. I totally agree that your body can not heal unless it is at total rest with itself within a physical emotional and spiritual sense. bedtime2
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Cather1ne
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« Reply #39 on: June 07, 2012, 05:40:13 PM »

Excellent post Rog.

I've not come across this one before, very well explained and supported.

 clap thumbsup
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« Reply #40 on: December 06, 2012, 09:50:20 PM »

I know this thread hasn't been commented on for a while - but  . . . it's been a great thread. I've just been to my first meeting with my Dr at a CFS clinic and I know I was told to pace and meditate (something I have done on and off and I like it) and that my idea of resting (TV, reading, computer) isn't resting - that surprised me! So how to pace? and here it all is written down. I hope to get it to work. So  c017
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« Reply #41 on: March 26, 2013, 11:19:25 AM »

I have just been reading through this post and have found it very useful but I am not willing to accept how long this is going to take Smiley Smiley


I am worried that if I accept this I won't get better so I need to figure out a way of pacing my mind to cope with the time that it is going to need with acceptance but remaining positive!!!!!!  bang head
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MissyRS
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« Reply #42 on: March 27, 2013, 09:54:00 AM »

I try not to think about time scales!!!

A bit like a decent bottle of whisky = it'll take as long as it takes!!!!!  If I think about something possibly taking X amount of time - its just depressing so ---- eyes on the prize = which is much better health and energy levels and the ability to wisely choose how we spend our time and 'life'!!!!

Ciao.  smile
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« Reply #43 on: March 27, 2013, 06:12:25 PM »

Believe me, the sooner you accept your condition and start pacing, the sooner you will start to get better. The alternative is yo yoing and that is not good for you. You have to give your body time to repair itself.

Pacing, pacing and pacing. Get it? Got it? Good!

 Kiss
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« Reply #44 on: March 28, 2013, 01:24:31 PM »

I am pacing I promise... just don't want to accept how long it's going to take... been improving my pacing over the last month and am definitely seeing an improvement this week... jsut had to drop my activity right down... and if I have a good day I don't overdo it!!!! It's blimin hard though  Smiley
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Anne56
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« Reply #45 on: July 02, 2016, 11:43:01 AM »

I have decided to do a Pacing diary - again. You can print them off here:
http://www.get.gg/docs/ActivityRestDiary.pdf

I have been reading through the ME/CFS Management Programme which was given to me a couple of years ago by the therapist at the hospital. This incorporates Graded Exercise and Graded Activity. I was shocked to read: ’Don’t listen to your body. It is likely that you have been listening too closely to what your body has been saying’!!!!

Obviously our body is ’saying’ something because something is not working properly!! Perhaps anyone who has a different health condition should be told the same. I have been told that my antibodies are 70 instead of 5.7 which is what it should be. How can GET, or ignoring my body change that fact? This excessive number of antibodies show that my body is reacting as though I have an infection or virus. How will that change if I keep pushing my body to do more than it is able to do?

I believe in holistic therapies and surely that means listening to what our bodies are telling us. Or is it me that has got this all wrong?!
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roger
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« Reply #46 on: July 02, 2016, 04:02:59 PM »

Hi Anne,

No, you haven't got it all wrong, you've got it right!

When you got your antibodies result, what happened then? Did your GP just say, oh dear, or did he say, we need to find out why? If the latter, what is he doing about it? To be fair, one high reading doesn't prove much - they can raise, for example, because you've eaten something your body doesn't like. But if you've had several high readings, your GP, or a specialist he refers you to, should be doing something, otherwise, what's the point in doing the tests?

Re keeping a diary, fine if that suits your personality, but I'm not sure what it achieves, unless you're noting how you're feeling and using these notes to measure progress.
« Last Edit: July 04, 2016, 05:42:43 AM by roger » Logged

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« Reply #47 on: July 03, 2016, 06:28:10 PM »

Hi Roger,

I have an appointment with the stroke consultant at the end of this month. Hopefully he will come up with something. I have had more blood tests at the hospital and another brain scan. Next time I see the physio I will be telling him that I am definitely not attending the ME/CFS 'Management' course. I also won't be completing the goal activity sheet that he gave me!!

Thanks for your advice.  c017
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roger
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« Reply #48 on: July 04, 2016, 05:48:21 AM »

Hi Anne,

I hope the stroke consultant comes up with some good, reassuring news at the end of the month - the uncertainty must be doing you no good!

Re the physio - be canny, don't 'refuse' to do as he/she suggests. Rather, make it clear that you are not well enough! You don't want an uncooperative reputation  wink
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