CFS described as lack of energy instead of tiredness?

I agree with you Mike. I remember going on a CND march; some of us went the wrong way and got lost, walking for hours, and I still remember that pleasant feeling of tiredness.

But what I miss the most is the fresh early morning outdoor feel and smell, like dewdrops in the brain. It was exhiarating and I'd love to have it back, even once!

I remember that morning feeling too Georgia, As a keen fisherman, early mornings on a riverbank were one of the most joyous times of my life...

Houseman's poem always seems very apt.....

Into my heart an air that kills

From yon far country blows:

What are those blue remembered hills,

What spires, what farms are those?

That is the land of lost content,

I see it shining plain,

The happy highways where I went

And cannot come again.

Very true, lovely and relavent.  l guess many wont relate to this, but l think you will, the unique smell of the riverbank, also the smell of early morning grass cutting,  hope you feel that again Georgia,  some perfume, love it,, spent most of my childhood growing up leisure times along the banks of the river Aire, nearby, watching rainbow trout, through clear water, catching minnows, avoiding bloodsuckers, seeing swans herons mallard, harrier once, water hen newts and spawn, riding horses bareback, getting thrown off, chased by bullocks,dens and brambles. great adventures and learning, not many kids cant roam free like that now. Nostalgia, but live in hope. 

How poignant and apt, reading it was like being stabbed in the heart when I reached the last lines!

I've said this before quite a lot but we have to grieve just as though someone we love has died don't we. We grieve for the lost us.

Ah yes Lynne, fresh cut grass, what a lovely smell. It seems to clear the mind. I use essential oils and Scottish Pine's smells so fresh, but it doesn't bring back the fresh morning scent where you feel so alive when your brain's full of cotton wool. 

I wish I appreciated it more when I had it; like many things.

Agree, heinsight is wonderful, if we had it, nothing taken for granted. 

That's something this illness has taught me, to appreciate everything, even the little things. When I occassionally go out I'm like a little kid appreciating it! 

Ditto, recall on one occassion when ill and housebound a week or more, then on a lovely warm summer evening feeling well enough and my son giving me a ride up to local coop half a mile away, windows open summer evening air, sat parked up with door open, really a big deal,

Also taught me to never dismiss others illness symptoms whether physical or mental, having had mine dismissed mocked even by gps, l,d now always accept people,s problems at face value unless obviously not right.  We learn, often the hard way.  What a way to learn. Hope we can all get some pleasure out of the fine weather, def like spring today, uk.

It's natural that we are looking for joy. I know I don't have much. I grew up in a small village doing the same things you did. Now I can barely remember.Today I was in the store and there was a 6 month old baby girl in the shopping cart, screeching with joy, laughing, happy just to be alive.   I am very empathetic so I can soaked that up like you did the fresh air.   5 shiny second of today. still makes me smile. ..... did I put enough smillies in it?!

Yes, I don't know how sleep is connected to the whole condition, but after years of not understanding why I have to go back to bed an hour after getting up because I can't keep my eyes open, showed me that my body needed rest, not sleep. I learned not to get up when I wake up. My mind is awake (even if it drifts back a bit more) but if I wait and until my eyes will stay open for at least one minute without any force, I am ready to get up. Often take 2 hours of lying in bed after waking up. Is lack of enough (7-9hrs) or quality sleep a part of the problem? Perhaps but I found no way to make it better.

l think if you said extreme exhaustion or whatever some would mock and say` lve also ..........., ` nature of some people who dont experience it themselves, and can only relate to what they feel and think, small minded syndrome theyve got.  But agree that ME sounds a more serious and real  condition. l have intersticial cystitus, origonally called hunners ulcer after scientist hunner who discovered ulcers on the bladder wall of patients, then it renamed intersticial cystitus, describing instericial intersticiam-cracks in bladder, now its renamed painful bladder syndrome, again the syndrome tag seems to downgrade, leaves it open for others to say lve a painful bladder. Wonder if its the word syndrome that makes it sound more trivial or pretentious, `oh lve a syndrome`, as if not a real disease. ibs same, syndromes dont seem to be taken as seriously. Maybe there are serious sounding syndromes l dont know of. But yes it warrants ME 

The only time I use CFS is when I want to be sure that I'm being understood and I put ME/CFS. I never use it on its own. You're right Boni it trivialises something that's extreme and terrible!

It occurred to me that with ic. cfs, ibs, dont know about other syndromes, but they describe a feeling rather than a disease, leaves it open for anyone to say `l feel that as well`. Cant say that with ME

I think I agree. Feeling tired seems like describing a feeling. Oh, it's in it, literally We used to rest it out, but now, a lot of rest (complete rest) give only so much of energy. Need to be very frugal about it.

I wrote something about the name change in the other post and trying not to get to complete exhaustion. I've been working on that for years....

True, it drives me nuts when people tell me they're tired knowing that I have ME! 

'Syndrome' is a set of symptoms and and 'chronic fatigue' is the term of the disease but it doesn't make sense because chronic fatigue is only one symptom among many so it isn't a syndrome in itself.

 

l agree, with cfs, ibs, pbs now, it can be almost a denial officially of them being a disease, categorising it as a feeling, `just the way your feeling`, l had one gp even equate it to age, what, there are 80yr olds fitter than some 20yr olds with `syndromes`, seems a sort of cop out for some gps and maybe benafits people not to take it as seriously as they should. l had cancer many years ago, chemo, radiot, also had ops, they did cause affects and l,m not making light of those times, but l did recover and felt well active with energy within days or weeks, now the draining lack of energy to extent of often feeling ill that goes on and on. Monologue and rant over, or near, Re pips, l also look in on healthunlocked site, so many with cfs fibro going through asessments re assessment and so stressed, anxious, upset. Really hope he backs off, theyve enough on. best wishes to all,   

Know what you mean about Cancer. I had a carer who got it and in much less than a year she was fighting fit again! And a woman over the road took less time than that to get well.

It was horrible for them obviously but here I am still virtually bed ridden; it's been over 10 years so how can the medical profession trivialise it, or dismiss it as some of my docs have! (I have a good one now thankfully).

They seem to assume that it's not as bad as other, more well researched diseases but people die from it. I think the figures are covered up, or the deaths aren't reported as being from ME. It can cause organ failure so the cause of death might be organ failure instead of the root cause of ME.

l recall watching a tv play many years ago, maybe 20 or more, the main character was one of the first to highlight and campaign for acknowledgment, before well know or any net to raise awareness.

She was played by Julie Walters, her supportive mum Thora Hird, with those two there was of course funny elaments of it, but also the bad and sad, very moving with a sad ending. But that long since swept under the carpet. Probably no video of it now. Much is to do with the drama of the title, re `lve got cancer, heart disease, ms, oh no, terrible, can l help` or `lve got cfs, ibs, pbs, oh right` `me too`,. Many docs do trivialise it, too many, glad youve got one who empathises at last or least. Keep battling, all. 

I'd love to watch that! Think I'll google it just in case it's out there.

Is it 'Wide Eyed and Legless'?

That sounds right, but its many years since l watched it, and it is sad ending,so be be prepared if you do ever watch it. Best marigold after it. 

They're selling it in Amazon but they're American DVDs and they don't work in the UK so I ordered the book and one for my mum.

I take St John's Wort and Damiana so I'll be alright. Thanks for mentioning it!.

Hope you find it interesting, l can hardly recall it, but do remember being upset at end of it. Think l need St John,s Wort. l watch Best Marigold for a laugh at olders, good.  Take care

Hi Georgia,

There was a study between deaths and cfs/me that relates to what you are saying. Can't recall the name but you could google the terms for search If interested.

Best wishes

Beverley

I think I read it in a study somewhere but it was quite a while ago. It really should be made more public knowledge that ME can be life threatening then it might be taken more seriously.

There's a video in youtube of a young woman who had ME who committed suicide and her mum helped her to do it. She was imprisoned for it! Poor woman; that's atrocious. She's not only grieving and wrestling with the guilt stage that comes in grief but she's in prison.

Organ failure, usually the heart or liver and suicide are the main reasons for death in ME sufferers according to that thing I read.

I think it's really important to take uplifting herbs or use a light therapy box, mindfulness or something that stops us from plummeting into depression. In the CFS forum some people have hobbies that keep them in a state of flow rather than missing the past or worrying about the future. I think that's a good idea.

Hi Georgia,

I recently studied a short course In education and training. As part of the course we had to conduct a micro lesson and I chose cfs/me as mine. In it I pointed out that It is life threatening, used a story of a young woman whose mother helped her commit suicide and the statistics I mentioned. I wanted people to understand the gravity of the condition.

I think the feeling down, depression and anxiety that accompanies the main condition can make It even harder and lack of confidence and self esteem too come into play as many of us struggle with the memory problems and conversion to speech issues publicly. I think we each have our own unique struggle with this but, can receive understanding and hope on here from our fellow sufferers. For instance, it can be so helpful to know that sunlight helps some people and makes others worse?

Also, just wanted to let you know that I have also read a couple of articles where people who have been completely bed bound have recovered.

Best wishes

Beverley

Yes it's strange about sunlight isn't it; it helps me. Several years ago we had quite a lot of sun and I was solar gazing. It gave me extra energy and I actually managed to re-decorate my living room on my own doing a bit at a time.

It's hopeful that some people do get better. A lady from the local ME Group told me that one woman was so bad she couldn't even use her hands but she got better and became a very successful commercial gardener!

Its good to know of happy endings with this : )

Certainly is! 

hi l think it interesting just how much it does affect physically and phycalogically, lve been going out less due to phyical affect, but do push to get out occassionally even if only for a short time, when out find l,m moree uncomfortable, with people l guess, confidence low and in my own zone, though some people can make you feel better than others. Last week the friendly jehovas called, but l can have a laugh with her, mentioned `being in the wilderness` in a light hearted way, she laughed, related acknowledging, as she and most are there at time time or other

l can also relate to the decorating Georgia, but my boost was a course of steroids prescribed for a chest problem, l felt some energy for a week or so, decorated for 3 days, fantastic to feel energy, l asked doc for some more, not  a chance. Will try one of the lamps, and did feel better yesterday with some sunshine than today in the grey cloudy heavy sky, bit shattered, fell asleep woke up feeling worse.  l seem to recall Ester Rantzen campaigning years ago, due to her daughter with me cfs, l think she did improve, get better, took a few years, think she,s doing ok now, never hear her mentioned, but think she did recover. We live in hope, l do.  

, 

The light therapy's excellent! It gives me more energy and I feel more cheerful, and sometimes I get a sort of tingling feeling through my spine, it's powerful stuff! I recommend the LED ones, think they might be safer for the eyes.

They're saying blue ones are better than white ones but they're pretty expensive so I'm sticking with white until the blue prices come down.

I'd thought about getting one for several years umming and arring, but I did an essay on research about them for my OU degree and I was convinced of their effectiveness so I got one and I'm glad I did.

Def worth it if it helps, will give it a go, thanks

Hi Lynne,

In regard Ester rantzens daughter, I read her story just a couple of days ago. Yes, she did recover and was bedbound. They used GET where to start she was just moved from her bed to the chair 15 mins a day. Its amazing that she got better with this after getting so ill. I, like you, am finding I have to rest alot at the moment but, see it as a temporary stage as much as possible.

Beverley

Hi Bev,  Glad to hear of anyone who improves. l try to be the same as you in attitude, in not looking at present state as permanent, even though some days l feel to be  getting worse, but others days not so much, so try to keep posative and hopeful for future. Life would be too bad if you couldnt live in hope.