Huff. Post: How Walking - and Laurie Lee - Got Me Back on My Feet From Illness

[Firestormm]

Nicely written article from the other day (I wasn't well enough to post at the time). It got a lot of reaction on ME Association Facebook

Always difficult reading 'good news' stories when feeling crook and thinking that things can't get any better but on the other hand I do like to hear from people who are finding some success using simple methods that I have also found have helped in the past.

Anyway, we are all different:

26 June 2014

Colette Bernhardt
Freelance feature-writer for the Guardian, The Times and UK national press

How Walking - and Laurie Lee - Got Me Back on My Feet From Illness

In 1934 a Gloucestershire boy strode out to London, 'nineteen years old, still soft at the edges, but with a confident belief in good fortune.' Laurie Lee, who would have turned 100 this week, described this epic journey - which eventually saw him trekking the length of Spain - in 1969's As I Walked Out One Midsummer Morning.

Laurie Lee on the road in 1934 (Image courtesy of the Laurie Lee Estate)​

I discovered his lush, sense-exploding prose in my teens, when I too longed to escape the cosseting boundaries of home. Reading his portrait of rural childhood, Cider with Rosie, was like rolling in pollen: shrouded in sticky verbal petals you found yourself up close to deliciously minute details, your mind suddenly free and fertile; open to its own imaginings...

...Over 15 years I tramped further and deeper into the mythical places around me: Mount Caburn, bulging with Iron-Age burial pits; Kingley Vale, with its vast, wizened yew trees; and Lullington Heath, where rare orchids and wild goats emerged in the grasses if you waited long and quietly enough.

But last year, without warning, the unthinkable happened. I was struck down with chronic fatigue syndrome, and within months could barely make it down my street. Once a healthy, striding 34-year-old, now I had the vigour of a withering crone. So I returned to South Hertfordshire and my parents - now in a bungalow outside St Albans - in early spring, my only landscape the curve of faded, childhood pillows and the countours of the old embossed wallpaper.

Confounded by this poorly understood illness, my nervous system firing messages out like bombs, I became mollusc-like, doing less and less each day. But human bodies are built for movement, and inactivity only made mine frailer and more befuddled. By this time last year it was exhausting and painful to speak, write or hold a book - Mum read me bursts of Lee's A Rose for Winter - and my daily two-minute walks had dwindled to a handful of seconds.

In the brief spaces between my lie-downs, my loving but helpless parents arranged cushioned seats in the garden, alight with summer blooms. But I no longer belonged to the outside world; I lived in a dark, foreboding place that increasingly seemed, as Lee once wrote of his epilepsy, 'a tiny rehearsal for death'...

Read more: http://www.huffingtonpost.co.uk/colette-bernhardt/walking-laurie-lee_b_5530135.html

ME Association Facebook: https://www.facebook.com/permalink.php?story_fbid=712619132129081&id=171411469583186

 

[Valentijn]

Problematic article, but good comments after it.

1) The author had "CFS" for a grand total of one year before presuming that GET was starting to cure her. Post-viral fatigue is a possibility.
2) No PEM is mentioned or implied.
3) She sounds like she's still far from recovered, despite walking a lot.
4) She's attributing her recovery to GET, which could be entirely coincidental if there actually is recovery.

Basically she's completely ignorant about ME/CFS and is helpfully spreading her ignorance along with some nice photos. People like this annoy the hell outta me, because I can't blame them since they don't know any better, yet they can still be incredibly harmful to actual ME patients.

 

[justy]

That facebook link is not working anymore - says page may be broken or removed?

 

[Sidereal]

Sounds like PVFS which for some reason people insist on conflating with ME.

 

[taniaaust1]

sighs... I wish they'd stop only telling the postive GET stories.

 

[N.A.Wright]

That facebook link is not working anymore - says page may be broken or removed?

Seems like you need to be signed into Facebook for the link to work. Work around - copy and paste this http://www.facebook.com/pages/ME-Association/171411469583186 into your browser's address bar then login to FB and you should arrive at the ME page - article is now some way down.

 

[Firestormm]

That facebook link is not working anymore - says page may be broken or removed?

Links now replaced

 

[Firestormm]

Sounds like PVFS which for some reason people insist on conflating with ME.

Hmmm...

...And you will see that I clearly disprove the case that people who think that ME is a physical illness have a worse prognosis for their ME. My version only lasted 6 months after glandular fever and has not bothered me since....
http://forums.phoenixrising.me/inde...-a-meme-18-june-2014.30944/page-3#post-473945

 

[Firestormm]

Problematic article, but good comments after it.

1) The author had "CFS" for a grand total of one year before presuming that GET was starting to cure her. Post-viral fatigue is a possibility.
2) No PEM is mentioned or implied.
3) She sounds like she's still far from recovered, despite walking a lot.
4) She's attributing her recovery to GET, which could be entirely coincidental if there actually is recovery.

Basically she's completely ignorant about ME/CFS and is helpfully spreading her ignorance along with some nice photos. People like this annoy the hell outta me, because I can't blame them since they don't know any better, yet they can still be incredibly harmful to actual ME patients.

Here's a couple I liked from the MEA Facebook page (not read the comments below the article yet):

ME isn't a pissing contest and I've never understood why people are so dismissive of people who improve. If I'd done the right things in the first year of my illness I think I could have recovered but I didn't and here I am. But walking played a big part in my partial recovery after years of being very severe and after my last relapse I walk daily now. The walking isn't a cure in itself, just a way of improving function within the limitations of the illness. Two years ago I was bed and wheelchair bound. Now I can play with my kids and go for two good walks a day as long as I rest in chunks in between. I'm in pain and feel dreadful some days but those walks keep me sane. Walking isn't making me better but it's making my life easier within the confines of my ME.

It makes me so sad and angry that positive stories like this get turned into a competition about who has the illness the worst, no one knows how much this poor person has suffered but I'm glad they're not in that dark horrendous no-mans land anymore.Yes people don't understand and yes it's hard to hear of someone's success when you feel life's impossible but I doubt a cancer sufferer would be critical of another cancer sufferers recovery. I will forever be supportive of fundraising/raising awareness for M.E because I know what hell it is but hearing the constant criticism of anything remotely positive on this page only fuels the negative association with this condition...

I hate the "you cannot recover from ME bullshit". It's possible, particularly in the earlier stages. The longer you are ill the harder it is, partly I think because of the way it affects the body and partly because we are the sort of people who have found it hardest to adapt to the strict confines of the illness. I still fight it or ignore it all the time, 16 years in. People can get better and it helps no one but the psychs to pour scorn on everyone who tells a positive story. The stupid thing is that she says herself that she's not better. 30 minutes mild exercise a day doesn't come close to equating to an 8 or 9 hour working day.

Much as I tried to maintain walking, using a pedometer and such, I couldn't seem to halt a decline in my walking ability from when I was first ill. Starting to use a wheelchair opened up my world though I still walk as much as I am able in my house and garden.

Thanks for posting this.Brought me to tears by reminding me how far I've come. Inspiring

I've just started with my CFS specialist OT to pace my life starting with walking. 30 steps to the garden, sit and rest till I'm no longer breathless or dizzy and 30 steps back in to rest. On my worst days I dread it and it feels like arriving at the summit of Everest. But to do it everyday even if all else I do is stay in bed, is an accomplishment and I get fresh air.

I hope and pray that one day I too will be able to walk 30 minutes everyday. But to do the 30 steps and nothing else in life is impossible so baseline for everything else is going to be a long haul. I have to believe it will help and I will recover at least some function to live a life fuller that this.

Telling me it is not ME if I do make some recovery, when currently I fulfil all the hummingbird foundations criteria for ME and not CFS is just another one of the things that make psychiatry think it's in our head and we choose to be ill. We might not have a cure but we have to believe doing something proactive, however slowly, will positively affect our health.

 

[Firestormm]

I see there is a reply from the author to the comments beneath the article that I am slowly reading:

Colette:
Interesting comments Paul & Joanne. I can't speak for others, for whom graded exercise may not have helped. But just to point out that I started very gently, with leg & arm exercises in bed, plus a structured programme of lying for two hours, sitting for half an hour, before I even attempted walking.

A properly trained physio/OT would not encourage a patient to start with anything that felt too much, and would not move them on before they felt ready. And for someone who'd been ill much longer than I had, the process might be considerably slower - years rather than months.

Joanne, I appreciate that if one has Lyme Disease, PoTS or another underlying illness, recovery is far more complicated. Paul, thanks for pointing me towards Byron Hyde, but if I don't have CFS, what do I have?! I do sometimes use the term ME to describe my condition, but as I've no proof that my brain and spinal cord are actually inflamed, I generally prefer 'chronic fatigue syndrome'.

and a reply:

Sorcha:
Well said, Colette. It does sound that you were advised very sensibly in your restorative or analeptic exercise, the type recommended by Prof VanNess and his team in California, based on their Cardiopulmonary Exercise Testing studies, which show that the muscles of MECFS suffers convert to anaerobic activity much more quickly than controls, and hence traditional aerobic exercise can be detrimental, but sensible analeptic exercise which does not cause an increase in heart rate does indeed help.

 

[Undisclosed]

The author of the blog does say in the comments section;

Joanne, I appreciate that if one has Lyme Disease, PoTS or another underlying illness, recovery is far more complicated. Paul, thanks for pointing me towards Byron Hyde, but if I don't have CFS, what do I have?! I do sometimes use the term ME to describe my condition, but as I've no proof that my brain and spinal cord are actually inflamed, I generally prefer 'chronic fatigue syndrome'.

I had great difficulty getting through the article due to all the flowery language.

 

[N.A.Wright]

I had great difficulty getting through the article due to all the flowery language.

It's a hymn to Laurie Lee, the British Countryside and walking, as much as it is about illness - 'flowery' hits all the literary references, I guess that could be a bit opaque to a non Brit audience. For more on Laurie Lee: http://www.bbc.co.uk/news/uk-england-28015290

 

[Undisclosed]

It's a hymn to Laurie Lee, the British Countryside and walking, as much as it is about illness - 'flowery' hits all the literary references, I guess that could be a bit opaque to a non Brit audience. For more on Laurie Lee: http://www.bbc.co.uk/news/uk-england-28015290

I know that @N.A.Wright , it just takes a huge amount of mental effort for me to read that kind of prose. I like short, sweet and to the point. I used to read 1-2 books a week (fiction) with no issues. I was a prolific reader, reading everything in sight. Now I can barely get through a short page of text and if the prose is all flowery and creative like that, I find it almost impossible. That's why I said what I did.

 

[xchocoholic]

I'm currently in a crash from my walking regime. I started slow and made it to 40 minutes every day or eod. On my last walk about a week ago I was tired but pushed myself anyway. This would've been impossible when I had ataxia tho. Many of us fail the Rhomberg.

I'm curious about what was stopping her from writing more than a paragraph at a time. Mental fatigue would be my first guess.

I haven't been able to write legibly 99% of the time due to neurological problems. I'm not sure what the term for this is. But my brain doesn't connect with my hand to form letters for more than a few words on a good day. I've learned that if I write slow and concentrate on the shape of every letter I do better for a little on a good day. I can't keep doing it tho. Walking or any exercise made this worse not better.

It's a pity some see ME as a pissing contest. I can't help but see symptoms for what they are. A failed Rhomberg is a sign that can't be ignored. Neither can dysautonomia. Or seizures. Or ? And yet it appears that many people discussing ME or CFS want to forget about these and focus on fatigue.

Tc .. X

 

[xchocoholic]

"In the brief spaces between my lie-downs, my loving but helpless parents arranged cushioned seats in the gardens, alight with summer blooms."

Anyone else thinking she's never had to push herself so her concept of functioning never included that at times we have to ignore minor symptoms, like fatigue, and do what's typically required from responsible adults and sometimes children ?

Not that everyone with cfs can push past their fatigue but it certainly sounds like she was pampered. I just wonder how often this happens. And are these the ones who respond to CBT or GET ?

Tc .. x

 

[Valentijn]

Anyone else thinking she's never had to push herself so her concept of functioning never included that at times we have to ignore minor symptoms, like fatigue, and do what's typically required from responsible adults and sometimes children ?

Yes, maybe that lack of pushing at onset is what allows some with PVFS to recover, while others who pushed themselves to stay active go on to develop ME.

It would be rather ironic, since it's the pushers who end up being accused of malingering or exercise phobia, while the layabouts are congratulated on having the will-power to recover

 

[xchocoholic]

Yes, maybe that lack of pushing at onset is what allows some with PVFS to recover, while others who pushed themselves to stay active go on to develop ME.

It would be rather ironic, since it's the pushers who end up being accused of malingering or exercise phobia, while the layabouts are congratulated on having the will-power to recover

That too. How would those who've always pushed themselves know that this time, they needed to rest ?

I don't remember hearing from my doctor that I needed to rest when I first caught the virus or whatever started all this. In fact I was encouraged to go back to work and given antibiotics for the green stuff I kept coughing up. Tmi. Lol.

The nurse where I worked was getting tired of seeing me. We had to check out via her if we needed to go home. I looked like hell and my body temp was always below 97 so it wasn't a problem. My whole body fell apart quickly.

I was thinking maybe this person didn't get the kind of ME that causes a multitude of neurological problems. I coulda missed it but I didn't see her mention ataxia, seizures, dysautonomia, pem, etc etc.

I wonder how many "layabouts" are dx with cfs. Maybe those who recovered using cbt fit that description.

Tc .. x

 

[CFS_for_19_years]

Maybe she should appear on Dr. Oz, where they can fluff a few more pillows for her and take video of the countryside....cut to pics of inside of her colon.

It's Sunday folks, time to chill....It's a joke!

 

[N.A.Wright]

I know that @N.A.Wright , it just takes a huge amount of mental effort for me to read that kind of prose. I like short, sweet and to the point. I used to read 1-2 books a week (fiction) with no issues. I was a prolific reader, reading everything in sight. Now I can barely get through a short page of text and if the prose is all flowery and creative like that, I find it almost impossible. That's why I said what I did.

My reading impairments are much more variable, from 100% word blindness to maybe managing a magazine article of realtively difficult text of up to a couple thousand words at a sitting. I haven't read a whole book though in maybe twenty years but that's perhaps more about tracking memory rather than the effort of getting to grips with text or actually recognising words.

What I have found, and it's an effect that applies to spoken as well as written language, is that familiar idioms and rythms are easier to deal with than the unfamiliar. In the case of Collete Bernhardt's piece, the rythm and also the real world references, supported by the photos provided a frame work which for me was supportive. I think that may also have been why some of the Facebook respondees were enthusiastic - there was a tonality which (for those particualr readers) made the writing accessable despite there being fairly dense content. So my thought is that for ME sufferers who do have congitive problems that impact on language, cutural contexts and rhythms may have big effects upon what is accessible, readable or comprehendible.

 

[chipmunk1]

what chronic disease can be cured with exercise alone?

RA?
MS?
Parkinsons?
Crohn's disease?

The author didn't say recovered but said she improved.

I don't think there is anything wrong with that. A subset of not very ill people might feel better if they move a bit. The question is whether the improvements will last or there will be a crash and a relapse after a while.

From what she writes she seems still quite ill.