Monthly Archives: March 2013

Getting Out of Bed (Myalgic Encephalomyelitis)

Getting out of Bed is always a pain.  This morning was the same.  Set an alarm – yeah yeah – the alarm goes off at 7 O’clock (Party Time) but that’s or more less only first warning – I rarely even remember getting up to switch it off.  8 O’clock alarm more like it – brain is thinking – get up take mediation; but I’m still sleeping come 10 O’clock.

It’s easy when you’re living with someone.  My daughter shouting to me; “Are you awake?”; “Can I go to the toilet”…  She’s a huge encouragement; generally to help dispel the normal doom which causes me to roll over and go to sleep when she’s not there.  A wife nagging you to get to work; or just the thought of it used to get me out the door – but hell, I remember stopping the car and going back to sleep for an hour on the way to work!

Let me explain.  One of the major symptoms of M.E. is muscle fatigue as if the energy you need isn’t there; which leads to pain; breathless; poor circulation – everything is running at 80% efficiency – you just not getting enough.   But the brain is thinking:- pain, anxiety, push harder, finish what you started, get up, get going, breath…  and then there’s what is called inappropriate adrenalin response…

That means that when you wanted to push, to get up, to do anything – nothing happens; and then later or when you want to relax bang… adrenalin.   This is relentless; try working when you need to – or sleeping when you should.  Pretty soon you really fatigued!

Doesn’t fatigue help you sleep?  Well, in a word no.  Because you can’t control it.  You are likely to be stressed by the end of the day, – because you achieved nothing or little that day or because you’ve already started thinking how you’re going to get up the next day.  Then there’s the physical pain; when it’s bad it warps around you when you lie there trying to sleep.

Getting relaxed, taking your mind of the day’s worries, stopping working or thinking an hour or so before bed is excellent advice.  I rarely achieve this state of mind.  I only wish life would let me?

Getting out of bed requires a number of things to be right.  Firstly you need to have had some refreshing sleep.  (1 in 100 chance of that if you have got life in order to try and stop the anxiety) but possible?

A glass of water immediately on rising; before the alarm is off and soon as you are on you’re feet.  Not bed sitting in bed – you’ll fall right back into the pit.  Oh, and put the alarm downstairs.  Drink the water, slosh and straight downstairs… switch of the alarm.

Hopefully both the rush of drinking the cold water; together with dash to alarm will have woken you enough to stand by the kettle and wait for it to boil; at least when it does – you’ll wake up? (without the glass water I’m back in bed and in a stupor before I know it!)

Next is up to you.  Set a few goals or things to do immediately.    It’s easy when you know the kids need breakfast, but on your own… you’ll fall asleep on the sofa.

I boil the kettle

Switch on the kids TV (not the news – you’ll end up channel hopping for 2 hours waiting for something interesting…)

Switch on the Computer

Then I follow them around:- make Coffee, log-on, put in toast, load Outlook, butter toast…  this way I’m moving and not sitting down backsliding towards sleep.  After I’ve eaten then allow myself to relax… but not sleep?

Getting Up M.E. Myalgic Encephenilities

From Dr. Slump. Volume One by the wonderful Akira Toryiyama! Helping us all keep a sense of humor!

I’ve struggled to get up for over twenty years; long before my diagnosis.  I know I’ve ruined parts of my life, or missed them altogether, – even slept in when I’ve got tickets to go places…  Without a solid routine to chase me around in the morning I sleep for the rest of the day.


The forest of One

I am re-posting this incredible story from Facebook:

forestofone

Lone Indian Man Plants 1,360 Acre Forest single-handedly!!

A little over 30 years ago, a teenager named Jadav “Molai” Payeng began burying seeds along a barren sandbar near his birthplace in northern India’s Assam region to grow a refuge for wildlife. Not long after, he decided to dedicate his life to this endeavor, so he moved to the site where he could work full-time creating a lush new forest ecosystem. Incredibly, the spot today hosts a sprawling 1,360 acre of jungle that Payeng planted single-handedly.

It all started way back in 1979 when floods washed a large number of snakes ashore on the sandbar. One day, after the waters had receded, Payeng , only 16 then, found the place dotted with the dead reptiles. That was the turning point of his life.

“The snakes died in the heat, without any tree cover. I sat down and wept over their lifeless forms. It was carnage. I alerted the forest department and asked them if they could grow trees there. They said nothing would grow there. Instead, they asked me to try growing bamboo. It was painful, but I did it. There was nobody to help me. Nobody was interested,” says Payeng, now 47.

While it’s taken years for Payeng’s remarkable dedication to planting to receive some well-deserved recognition internationally, it didn’t take long for wildlife in the region to benefit from the manufactured forest. Demonstrating a keen understanding of ecological balance, Payeng even transplanted ants to his burgeoning ecosystem to bolster its natural harmony. Soon the shadeless sandbar was transformed into a self-functioning environment where a menagerie of creatures could dwell. The forest, called the Molai woods, now serves as a safe haven for numerous birds, deers, rhinos, tigers, and elephants — species increasingly at risk from habitat loss elsewhere.

Despite the conspicuousness of Payeng’s project, Forestry officials in the region first learned of this new forest in 2008 — and since then they’ve come to recognize his efforts as truly remarkable, but perhaps not enough.

“We’re amazed at Payeng,” says Assistant Conservator of Forests, Gunin Saikia. “He has been at it for 30 years. Had he been in any other country, he would have been made a hero.”

Thumbs Up - I like it!


Only Angels Have Wings 1939 Howard Hanks

Only Angels Have Wings

Cary Grant     Directed by Howard Hanks   with   Jean Arthur

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Cary Grant (Born 1904 and aged 35) and Jean Arthur (Aged 39) in the contrasting DVD cover and post for the 1939 Howard Hanks movie; “Only Angels Have Wings”.  The Bright blue and iconic palms trees might lead you to think this was a happier picture than it actually was.  The only clue to suggest otherwise is the worried looking Rita Hayworth Cradling the head of Richard Barthelmess.

I mention Cary Grant age just to place him where he was in time, his carer and endurance of this popularity being enormous.

This dark film is far better represented by the DVD cover; Cary Grant’s character Geoff Carter attempting to remain cold and distant from Jean Arthur, playing Bonnie Lee whose bouncing positive nature rattles Geoff Carter from the start.

onlyangelshavewings1

This Columbia poster sums up the movie better; although to give credit to the performance of Jean Arthur she be the one holding the swooning Grant.  The film is dominated by dark night scenes; dark rain scenes and death.  With pilots dropping from the skies like files.

Now I bought this film due to two recommendations.  One that the Iconic ‘Indiana Jones’ outfit – the Fedora and leather working jacket; or in this case flying jacket (similarly to Alan Ladd in China) was inspired by this film.  A perfect description as far as wardrobe goes for these pilots.  The bar where these ill fated pilots gather looks like an ‘Indiana Jones’ convention!  The sight causing me to spluttering and snort my coffee all over the place.  Have got over these I must add the movie is in no way spoiled by this association.  Nor does the second recommendation as a possible inspiration for ‘Tales of the Gold Monkey’ – a favorite series from my childhood – whose humor and  characters could easily walk from the Monkey bar in Bora-Bora, South Pacific, into the Barranca Bar, South America!

‘Only Angels have wings’ was directed by Howard Hanks; supposedly based on personal experiences.  This followed his previous success with Cary Grant in the comedy ‘Bringing up Bady’, called the “the screwiest of the screwball comedies” by critics – defining the genre of screwball comedy.  Howard would work again with Cary revisiting the style.  However Howard, as did throughout his carrer.

The idea for the film was developed with Jules Furthman who work ed with Howard Hanks on many successful, and style defining movies such as ‘To Have and Have not’, ‘Rio Bravo’,  ‘The Big Sleep’.  ‘To Have and Have Not’ it self made by Hanks and Furthman out of Hemingway’s “worst book” for a bet.  Furthman and Hanks make an prefect team; if you are studying either direction or scene writing – both are worth study – especially together – or in seeing the development and reuse of ideas and progression of style and how both writing and director drives a plot with a smooth realism.

Bonnie Lee opens the story, looking lost in the foreboding docks on some unknown distant shore.  The setting dumping the Vacationing show girl, Bonnie, in foreign immediately sets a scene which the viewer is uncomfortable with.  Bright attractive blonde – at risk of being marooned, robbed or worse in a setting which at first is difficult to place, and then is not all together pleasant South American trading port – with poor communication and wholly unreliable transport links.  Yet Bonnie fixes to stay a while attracted to Geoff; in the opening scenes a voice at the back of your head screams no!  Get the next boat out of there, but then events hook you – drawing you in.

The events of the movie are staged around Geoff Carter’s Air Freight business – strangely it appears to be run pretty much of a bar.  Where Bonnie observes the stresses of the pilots, and their boss as aircraft crash, smash – get stuck in driving rain, snow and worse.  All the while Carter pushes to keep is business running, determined to get a lucrative contract to keep his fright company going.

Bonnie involves herself, Carter shuns her all the while diverting his glassy eyes, then to complicate things a misfit pilot – with glamorous wife appears on the scene.  No one trusts the pilot – who risks his life for pay; whilst his wife, who happens to be Carter’s old flame starts stamping in Bonnie patch.

On a knife edge the business, the pilots lives, the stuttering relationships, the poor weather and Carter’s future all balance.  The combination of characters and flaws swing until something has to give.

Bonnie resolutely gives up on Geoff, with some fine dialogue, and bids him farewell.   Carter offers to toss a coin to help her decide: heads, she stays; tails, she leaves.

A break in weather causes Geoff to rush out to secure the all-important contract.  Bonnie is still unwilling to be pushed in to making a choice between Carter, who’s now flown to certain doom with the clouds returning, and the next boat home?   Emotionally she says, “I’m hard to get, Jeff — all you have to do is ask me!”  But Carter stubborn as a mule, and has the dialogue to prove it, gives her the coin to make the toss.

All is resolved, much to Bonnie’s thrill when she discovers that coin is a double header.  Proving Carter might not be able to talk about his feelings, but he really does want to be a likable Bastard?

The endings although not spectacular by today’s standards is satisfying, but you wonder was Carter really any good for Bonnie?  Which goes to show that in the end you have connected with the characters, not be put off by the plot, not doubted the credibility of special effects – which hamper most of todays movies, and in the end you shared part of the emotional journey the pilots went through.  Who ‘won’ is not quite answered – the dead pilots have their wings now.  In the end Carter has a showgirl and a contract; he’ll be looking for more pilots then?

ONLY ANGELS HAVE WINGS


Exercise and Myalgic Encephalomyelitis

Myalgic Encephenilities and exercise.

I’ll tell you first that exercise as you currently think about it is impossible.  But I’ll also tell you some sort of exercise is vital.

This is a lot of duff advise about exercise and M.E. out there, don’t follow any advice until you understand your condition.  I’ll also say there’s a lot of duff diagnosis out there.  This advice is for people who have M.E., and have understood and accepted the diagnosis.  By accept I mean you have accepted the diagnosis and started to recognize and understand your limits.  This took me years.  I also understand that I did too much because I didn’t understand the disease – nor was I able to separate it or get any from the CF/S label.  Having done to much and tried too hard I did myself more harm than good.

If you have Chronics Fatigue get advice for the condition that is causing your particular fatigue.  If instance if you are recovering from an operation or cancer treatment – your fatigue is particular to you situation.  The label CFS doesn’t help; but there are experts out there for Chronic Fatigue who can tailor their advice.

For M.E. you will find that movement is either painful or difficult due to fatigue, numbness or pain.  If you don’t move however the pain will get worse and in the long you run you’ll do more harm to your body by not moving.

Set realistic limits and boundaries.  A simple thing is to say I will get up and stretch everyday.  Not always convenient, but if you set aside a slot of time for yourself then it is possible to do gentle stretching.  I find a hot bath helps; although these days I admit I’m to fatigue to bother with baths.  An hour after breakfast when your Brain is just begging to kick in is a good time.

So what exercise do I do? None.  Not real exercise anyway; one day I might get there but not yet.

5 minutes is a sensible time limit.  I recently attended the EPP (Expert Patient Programme) which I was referred to by my doctor.  I’d recommend it, they can help you make the right choices.  So 5 minutes as the time limit – but you must also set a boundary.

On the EPC one patient had set the target of walking around the block once everyday.  She said this ‘should’ take her 5 minutes.  Good goal?  Wrong she didn’t consider how slowly she walked.  In fact it took an exhausting 25 minutes.

if you set yourself both a boundary and a limit you should be more comfortable.

“I aim to walk around the block; I will set a limit of 5 minutes and measure my progress by the number of lampposts.  If I canout achieve my aim today I will stop at the nearest lamppost and turn back.”

When you set out allow time for the outward and homeward journey.  1 lamppost and back first day; maybe two the next.  That’s 2.5 mins. out and 2.5 mins. back.  Goal for the day achieved – 5 minutes exercise! 

Maybe the goal will change and stick at 5 lampposts as the limit (allow for the time limit – remember you might be slower the next day).  There is no rules against changing your goals; or adjusting them if you are unwell – or too busy with something else.  If you’ve had to drag yourself out shopping that’s more than 5 minutes activity – jobdone, no need for anymore, tick in the box and put the kettle on!

Oneday you might get half way round the block and instead of turning back – the quicker way home is forward.

To be honest I don’t even manage a walk out every day; I’ve let that goal slip.  But I do not beat myself up about it!  It all depends what life is throwing at you?  Personally I glad to be up and about.  Stretching at least once a day and keeping mobile around the house.

With M.E. any energy you should have isn’t there; what you have must be rationed.  But you must use it!  Staying immobile  too long could kill you.

My exercise for today is stretching; this Blog – warms up my brain (uses a mass of energy though!); then I have to use what is left to cope with life.  After dealing with the post and the anxiety it brings there’s nothing left, but at least I still moving!

You can also get some good advice from Physio or Pain Management.  They recommended Resistance Exercise Bands.  A sort of rubber sheet with graded strength – a great supplement to basic stretching; they have no weight but can be used to add some resistance and help build up or maintain strength. Resistance Exercise Bands

 

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