I'd have to agree with that

I'd have to agree with that although I have also gained some understanding from both the spoon and the bean theories.

When the spoon theory doesn't fit

A nice list of references for M.E

Originally created by Debbie Watton and provided by Chronic Fatigue Syndrome and Fibromyalgia NSW

I can't Stand The Rain by Mama Chill

Don't you just love these lyric, this lady and how she copes and thrives despite having Myalgic Encephalomyelitis (M.E)?

Check out some of her music videos below and head to the itunes store if you love her stuff too.

I CANT STAND THA RAIN, ON MY WINDOW, BRINGING BACK SWEET MEMORIES
I CANT STAND THA RAIN ON MY WINDOW, BRINGING BACK THOSE MEMORIES
SAY WINDOW PANE DO YOU REMEMBER HOW SWEET THINGS USED TO BE
NUTHINS THA SAME SINCE THAT DECEMBER, YEAH, WHEN I GOT M.E

SEE, I USED TO HAVE A LIFE THAT WAS BACK IN THA DAY
BEFORE CIRCUMSTANCE CHANGED AND TOOK IT AWAY
NOW I CANT PLAY CANT WORK A NINE TO FIVE
BUT I STILL THANK GOD FOR KEEPING ME ALIVE
COZ I'M A SURVIVOR NO MATTER HOW HARD IT GETS
LIFE IS STILL BEAUTIFUL, DON'T LET ME FORGET
COZ SOMETIMES WHEN I'M DROWNING I CANT SEE THA VIEW
AND THAT'S WHEN I NEED YOU MY FRIENDS TO PULL ME THROUGH
I STILL GOT A FEW BEEN THERE FROM THA START
THEY WOULD NEVER LEAVE OR DELETE ME FROM THEIR HEART
OR THEIR FACEBOOK OR TWITTER, WHATEVER THA BUZZ
TRUE FRIENDS LIKE FAM WILL ALWAYS HAVE LUV
AND I WISH I COULD JOINEM OUT ON THA DANCEFLOOR
WISH I COULD DO ALL THA THINGS I DID BEFORE
INSTEAD OF HERE LISTENING TO THA TEARS COMING DOWN FOREVER MORE

AND I CANT STAND THAT RAIN ON MY WINDOW BRINGING BACK SWEET MEMORIES
I CANT STAND THA RAIN ON MY WINDOW BRINGING BACK THOSE MEMORIES

YA LOOK AT ME WITH SUSPICION I KNOW THAT YOU DO
COZ IF YOU CAN'T SEE THA TRUTH HOW DO YOU KNOW IF IT'S TRUE?
IT'S LIKE A BOOK AND A COVER, WAIT UP AND TAKE A READ
IF YOU TAKE A LOOK INSIDE YOU'LL FIND ALL THAT YOU NEED
TO CHANGE YOUR MIND COZ YOU'LL FIND THAT WALKING IN MY SHOES
AINT ABOUT BEING CRAZY, IT'S ABOUT CRAZY VIEWS
OF THA IGNORANT PEOPLE THAT DON'T UNDERSTAND
HOW I CAN LOOK THIS GOOD BUT BE ILL ON THA OTHERHAND
YOU CANT SEE CANCER OR HEART DISEASE
YOU WANNA SEE ME IN HELL FOR YA NEED TO BELIEVE?
I AINT DUCKING AND DIVING AN SWINGING THA LEAD
WHAT I GOT IS PHYSICAL AND NOT IN MY HEAD
I WISH YOU COULD SEE PASSED THA LAUGHTER I EMBRACE
I WISH YOU COULD SEE IT'S A COMPLEX CASE
IF YOU CANT TRY AN UNDERSTAND, STAY OUTTA MY FACE

COZ I CAN'T STAND THA RAIN ON MY WINDOW, BRINGING BACK SWEET MEMORIES
I CANT STAND THA RAIN ON MY WINDOW BRINGING BACK THOSE MEMORIES

IT'S A GOVERNMENT COVER UP THEY ALREADY KNOW
IT'S A VIRUS INSIDE US, JUST DON'T WANT IT TO BLOW
COZ THEY KNOW ITS IN OUR BLOOD THAT'S WHY WE'RE BANNED FROM GIVING IT
I KNOW ITS F*CKING PHYSICAL COZ I'M THA ONE LIVING WITH IT
TRY AND HUSH IT UP AND MAKE OUT THAT WE'RE CRAZY
BUT WE AINT SHUTTING UP TIL THA TRUTHS OUT BABY, TIL THA TRUTHS OUT BABY, TIL THA TRUTHS OUT BABY.


 Jus Human lyrics


There's life in ME.  You can see it. You can feel it just as much as the death.  Living on the edge.

Find Stacy Hart (a.k.a Stinkyplank) on itunes as Mama chill
She hope's you'll choose to be a lover of life.
And I hope she is not "Running on Empty" nowadays.

She describes herself as Urban Artist Mama Chill, Songwriter all genres, M.E sufferer, Dream Therapist, Hornet&Gooner, Vegetarian, Chocolate eater, luv to Laugh coz lifes too short ;) xxx

She is popular in Watford, Herts, UK and cherished by M.E Sufferers worldwide as their voice to be heard.

I am not very well but there are #millionsmissing not just me

My temperature is 37.4, that's all.  Relapsing and remitting mini-fevers for 20+ years.  My basal temperature is about 36.5.  I'm dizzy.  I'm in pain.  Lead legs, hard to concentrate, light sensitivity, sore eyes, breathlessness, zombie mode, placid, sit and stare, don't want to move, nauseous, don't have an appetite, neck pain, surprisingly not so sore neck glands though, sore throat, burning mouth, aching legs, hurts to lift a cup of coffee with my main hand, headache, reflux, delayed gastric emptying, aching fingers, burning soles, tingles and strange sensations right hand side of my back (but that's probably the arachnoid cyst on my spine), strange wheezes cleared with a productive cough when I breath in, squeaks in my throat when I breath out, shoulders relentless, forget what I am doing, slow to make a decision, stopping and doing nothing but exist for a few seconds while waiting for brain to tell me what to do next,  slow to process information, good for nothing but cuddles.

Crimson Crescents

I've got two of those, one on each side.

Crimson Crescents Facilitate CFS Diagnosis
By Robert B. Marchesani

Infectious Disease News, November 1992

MINEOLA, NY—A new physical finding in chronic fatigue syndrome patients may finally give clinicians what they have only dreamed about a clinical way to diagnose the disease.

Burke A. Cunha, MD, discovered what he called crimson crescents in the mouths of 80% of his CFS patients. After the word got out, Cunha received calls from other parts of the country. Physicians began telling him that they also were finding the crimson crescents in their patients once they looked for them.

"When we look inside somebody's mouth, infectious disease doctors and internists instinctively go right to the back and look at the pharynx. When they do that, they miss these crimson crescents because they are on the side. People have missed them for years," said Cunha, MD, chief, infectious disease division, Winthrop-University Hospital, Mineola, N.Y.

For the first time physicians may have a specific indicator to look for on physical examination of chronic fatigue syndrome patients, not unlike the bull's eye of erythema chronicum migrans in Lyme disease patients.

"If your patient has crimson crescents, you now can say it is probably chronic fatigue syndrome," Cunha said.

Cunha' s crimson crescents are located on both sides adjacent to the back molars. (See figure.) They are present as a crescentic membrane of tissue that points toward the uvula. During a tonsillectomy that membrane is removed, which is the anterior pharyngealpillar. This area is crimson-purple and looks like a crescent moon chopped in half because the base goes into the tongue. The top of the crescent bows in toward the middle such that each side mirrors the other, Cunha explained.

When someone has a tonsillectomy, the borders of the crescent become less distinct and the margins are not as sharp. They are located posteriorly where the tonsil would have been before it was taken out. So even patients who had their tonsils removed still present with the crescents but the location and appearance are modified, according to Cunha.

They are always bilateral, and they can be very bright, which is why he called them crimson instead of purple. These crescents last for months and gradually fade as the disease goes into remission. When the patient gets sick again, the crescents usually get redder.

"In chronic fatigue you always find the crescents alone. The rest of the pharynx is uninvolved," he said. There is a small portion of the normal population that may also present with these crescents. "If you get a patient with a sore throat in the office, he or she can have crimson crescents, and the back of the throat is red," Cunha said.

Cunha found crimson crescents in 3% to 5% of non-chronic fatigue patients who presented with non-specific sore throats. Patients who present with mononucleosis or Group A strep do not have the crescents, nor do those with cytomegalovirus pharyngitis or the common viral pharyngitis, according to Cunha.

After seeing many patients in a chronic fatigue study center at Winthrop Hospital, Cunha has his own beliefs about the etiology of CFS. "I believe that the virus that causes chronic fatigue comes from young adults or children who give it to adults. The young child recovers from the illness but the young adult gets a sore throat and some go on to develop the chronic fatigue in adults. I do not know why, but that intrigues me," said Cunha who is also professor of medicine at the State University of New York at Stony Brook Health Sciences Center School of Medicine.

Cunha is trying to grow virus out of these crescents in an attempt to discover their cause. "The problem is when anyone does antiviral throat cultures, clinical labs are not equipped to grow HHV-6. In addition, with viruses you have to go deeper than just the surface because they live within cells. So my next step is to biopsy the crescents," Cunha said. Since there is no test for CFS, the physician must infer the disease from other sources.

"But the most consistent lab evidence that we look for are elevations of coxsackie B-titers and elevations of HHV-6 titers in combination with the decrease in the percentage of natural killer T cells," Cunha explained.

"If the patient has two or three of these abnormalities in our study center, then he or she fits the laboratory criteria for chronic fatigue. Nearly all patients with crimson crescents have two out of three of these laboratory abnormalities," he said.

Cunha's finding is especially promising for physicians who practice too far from a lab to get such evidence. "If you are a physician out in the middle of nowhere and you can't get HHV-6 titers and you can't get the natural killer-cell percentage, then the crimson crescents may be the only way besides history that can suggest the diagnosis," Cunha told Infectious Disease News.

This article was reprinted by The CFIDS Association of America, Inc. publisher of The CFIDS Chronicle 800/44-CFIDS by permission of Infectious Disease News. Volume 5, Number 11, November 1992.

http://www.immunesupport.com/

Rheumy thinks I should exercise

Rheumy thinks I should exercise otherwise the fibromyalgia will cause more and more deconditioning. Pfft to his suggestion. I do too much too soon when I am we'll enough just trying to lead a normal life. And we all know what happens. Now my GP will never get me a disability parking permit. Yes he said go slow, don't hurt myself etc but he does not see post exertion relapses as part of ME yet he says all my symptoms even blurry eyes are fibromyalgia aside from the gut and thyroid. He prescribed Endep low dose and Neurontin for fibromyalgia and I already have the Tramadol. That's how he treats it . End of story. No more appointments for what I was sent for in the first place. I'm back on my own experimenting with the meds.

As for my gut, he was annoyed Stephanie nurse practitioner played doctor and I didn't get to have a proper consultation with a gastroenterologist before I went under or post procedure. He has not even got a copy of the colonoscopy report so I had to tell him. He wants me to demand to see a gastro. He is annoyed because he referred me to a public one but that I was denied access. Otherwise he wants me to go private which is huge big bucks.

Going by the copies of the reports I have about my thyroid, he ordered a thyroid scan with dye which I am having tomorrow afternoon at Warana at Lakeview Imaging. I half expected Dr Andrew to take things to the next level with my thyroid so this is probably a good thing to already have done before I see him. That way I can get my results when I see him next since I made sure that he will be getting a copy.

As for Lyme disease, the rheumatologist refuses to believe people can have Borrelia infection unless they felt getting bitten and got the rash. Seems he has not met some of my friends online nor does he seem to know that ticks inject an anaesthetic precisely so you can't feel the bite. Especially the tiny nymphs. Who's to say they have not been filled and already dropped off before being seen. In fact it is by their third and fourth meal of blood that they are more likely to release the Borrelia spirochetes and co-infections assuming they themselves are infected with them.

As for the testing, he says Westmead is the most accurate. Others would disagree. I had heard about false negatives but he says false positives are common. I'm just passing on his opinion. I don't think the state of medical expertise in Australia is to be trusted for the most part and it won't be until the Government back Lyme research and at least get in line with the rest of the world.

Short Synacthen Stimulation Test

 The Short Synacthen Stimulation Test took an hour and a half from start to finish including talk time, form signing and the wait time in between blood tests.  I was there early hoping that the doctor would be early.  He wasn't.  I do not know where he is stationed but he was due to arrive at my appointment time.  His name was Tim McNamara and he is the doctor associated with phlebotomy at Nambour.  I could not talk him into coming to Caloundra hospital.  This test cannot be performed by those who usually take our blood who are not doctors.  He had to be the one to give the injection but only after the initial blood test was taken by the nurse.  He said, she was better at it than he was.  I'd believe that.  The needle hurt like a B12 shot prolonged.  It did not stay sore for long but before that had eased off, I started to feel light-headed, wondered if I was going a bit out of it, but not quite woozy until my tum started feeling nauseous in sympathy with my head sensations.  I am sensitive like that now with motion sickness which has never been so bad since I was a car-sick kid until the last few years.  I knew I was no good with spinning around waltzing probably 9 years ago but roundabouts are a more recent problem.  So too can the sensation I get from the things moving past while using a mobility scooter.  It is also one of the possible symptoms of M.E.(Myalgic encephalomyelitis) and Lyme disease. Nevertheless I do believe that the injection brought this reaction on.

As an aside, you may like to check out the Lyme Symptom Questionnaire used in the article linked to above.

The good thing about getting whoozy was that I got to lie down after that.  I read a short story on the Kindle called The Scary Chair after the doctor stopped chatting.  He was keeping me 'occupied instead of fainting' or assessing my reaction to the needle but I was fine again within about 15 mintues or less in that I no longer felt woozy but I left the place today feeling that internal shakey feeling that I get and maybe you could call it imperceptible tremors.  Still got it now.  That means I have crashed from today.  The flu feeling.  Joints were fired up by this afternoon but I had been in air conditioning which is often a culprit.  My aircon rarely goes under 26-27 degrees C unless S has had his hands on the control.

Anyway, the doctor left and popped back in again later but mainly it was the nurse from here on.  She took blood at 30 minutes and 60 minutes post stimulation. I have bruises to show for it - bleeding under the skin.   Addison's is very rare so I doubt if I have it and the doctor himself said it was unlikely and he also told me when I suspected he had a bit of an attitude about the frequency of Dr N requesting these tests, that yes indeed he does tend to refer people for this test a bit.  Then he jokingly said that they had an "arrangement".  Despite its rarity, I am interested in the results because even a mild adrenal insufficiency (assuming it detects such) would be a reason for me to take a low dose of cortisol which has the potential of making me feel a whole lot better until I start worrying about my weight gain (if it is anything like prednisolone).

Unfortunately test results showing mild adrenal insufficiency are not always reported back to patients because lab results are designed to detect Addison's disease.  Wikipedia reports how the results are interpreted :

Cortisol stimulation

In healthy individuals, the cortisol level should double from a baseline of 20-30 ug/dl within 60 minutes. For example, if the serum cortisol level was 25 ug/dl before the stimulation, it should reach at least 50 ug/dl.

Interpretation for primary adrenal insufficiency and Addison's disease

The baseline cortisol level in people with adrenal insufficiency is usually near 15 ug/dl. An ACTH stimulation test that raises the cortisol concentration to 20 ug/dl would support the diagnosis of primary adrenal insufficiency. In Addison's disease, baseline cortisol is well below 10 ug/dl and rises no more than 25 percent.

Interpretation for secondary adrenal insufficiency

ACTH may dramatically stimulate cortisol from the low baseline value encountered in patients suffering from secondary adrenal insufficiency. Stimulation resulting in a greater than 14-fold increase in serum concentration over 30 minutes has been reported, although more typically serum cortisol levels will double or triple from baseline. The lower the baseline cortisol, the more likely it is that the patient's cortisol will increase by a large amount.^[14]
In some instances, a second test can suggest primary adrenal insufficiency (cortisol value less than doubled). The diagnosis may be changed from secondary to primary adrenal insufficiency or to include primary adrenal insufficiency. In secondary adrenal insufficiency, if the adrenal glands lack ACTH for enough time, cortisol production can atrophy^[15] and fail to rise to a value at least double the base cortisol value. It is proper to continue with the diagnosis of secondary adrenal insufficiency.

If secondary adrenal insufficiency is diagnosed, the insulin tolerance test (ITT) or the CRH (Corticotropin-releasing hormone) stimulation test can be used to distinguish between a hypothalamic (tertiary) and pituitary (secondary) cause, but is rarely used in clinical practice.^[15]

Now I will tell you what events prepared me for today.

The whole idea of the weekend was to ensure that I had enough energy in reserve for the unavoidable trip to Nambour General Hospital Pathology Department today.  It did not happen the way it was supposed to.

I told you that Rob came for coffee on Saturday but I did not tell you that S bought Connor back here, telling Connor that he couldn't come at first because Nanoo had screamed at him not to let him come over and that is why they were playing basketball.  OK or not, I cannot judge. It seems Connor does not like playing basketball with his Dad - that's what he told me.  He told me that he wanted to come and see me but I wonder if he was coached to say that?  It was only going to be a couple of hours.  It turned into from then until after lunch Sunday.  I knew it was zapping energy out of me and I actually sat down a lot .  I just sat there and played on the ipad, the exact same game that he was playing.....Dragonvale.  We set each other up as neighbours so we could visit each others lands and we sent video messages to each other from different rooms just for fun.  Actually I think he sat there longer than me by miles playing on his ipod or doing a switcheroo with my ipad.

I guess we both had fun because he did not want to go home and I did not mind doing Ange a favour keeping him longer because there is some trouble dealing with him at home.  I wonder why.  He is about to be using a different surname for the third time.  He's been a Jenkins at the school ever since he started despite his birth name but it will be changed again when Ange marries.  It is a bit of a mouthful to remember.  Swedish maybe?

Apart from anything else the reason Connor was here was because Esha had a cold but no-one was likely to tell me until it was too late.  You know how I hate inviting viruses into my house even it if means pushing away people.

Consequently I was already not firing on all cylinders before I even went to Nambour.  I knew S was driving so I relaxed more than I normally would if I had had to do it all myself.  He had planned to do a bit of work there but it was pouring with rain and threatening floods everywhere.  We saw plenty of water lying around and not too far away from being a problem.  It rained and rained but I was dropped off right at the door and got picked up after a warning phone-call at the same place so I did not get wet, wet.  Just the splashes.  S decided not to get wet either - just a coffee and driving around scouting for signs of potential solar sales.

On the way home we called into Forest Glen Organic Foodstore and I picked up some spelt bread which you are allowed to eat on the low FODMAP diet.

Nothing has changed

Happy New Year 2012

New Years Resolutions - try the FODMAP diet for IBS, feed my pancreas and put my feet up more especially after exertion.  


Overdid my quota waiting up till midnight downloading movies so now I can barely use the Internet thanks to Telstra's extremely restrictive shaping on an already over-congested exchange.  


The dizzies and mid-high back pain continue as 2011 turned into 2012 aggravated by a lack of suspension on a trial of a portable mobility scooter; a large solar flare was noted here, I love my ipad; Rob came here for a sleep to recover from drinking with Greg NY Eve; I finished off my six pack having a beer for Dad's birthday at  Military Jetty and noted that it was a more effective painkiller than any of the analgesic/opiods I have; I still have M.E., fibromyalgia and IBS (if not IBD) yet I am not depressed; S phoned from his new (temporary) home to wish me a Happy New Year and I forgot to tell you that his new home is not in Buderim with a Jewish 21 year old; S is instead living at Varcity opposite Uni Central just about on campus at Sippy Downs in a single room with shared kitchen and laundry paying top dollar because of .......some mixup he would not explain and I  am getting severe motion sickness.

The tourists are having a great time at Military Jetty at 6pm

It has taken an hour to upload this so you can't say I don't have any persistence but I think it is at the expense of my back to hold myself up too much longer.  I need to go horizontal.  However I did want to tell you something else but now I have forgotten it again.

Maybe it was the scooter thing.  I think I might have a chance of having a lot more fun zooming around locally armed with a fishing rod maybe on a smaller good grade non-portable scooter if I am going to have the freedom to get out of this house.  I can go on 30 km adventures which I could not do on a portable and the lack of suspension definately jolted my spine the other day.  A couple of months ago I may not have even thought of that being an issue because my pain has been mostly from my neck but that jolting brought back the problem I used to have at ribcage floor on my back which also causes migraines that can last months - hence the nausea.  I do not think the light sensitivity (been wearing sunnies inside and installing monitor brightness controls again...the same as this time last year) is part of that because I was getting that before and blurry eyes.  Blurry eyes were a new feature in 2011 and it started before I started taking Plaquenil for the record.

As for the scooter dilema, the best solution is to have one of each kind but if I was going to do that then I would prefer the car boot one to be an airport stow on type and if I am going to get a bumpy ride outside smooth surfaces then I will not be going on anything but smooth surfaces - shopping centres.  Nothing small like that is going to be suitable in my immediate local vicinity even just to get me to the Golden Beach Shops which is probably the most mobility scootered area in town but the least footpathed outside main thoroughfares.  It is also the most push-biked area of town by the elderly.  The other alternative is a power chair plus an all terrain mobility scooter.  I would not be talking like this if I was getting any better but I have not been and if I can make myself comfortable just maybe I can get outside these walls more often.  I would be able to go to Jan's BBQ's that they walk to down in Happy Valley.  I have missed out on things a few times because they were walking and trying to get a park anywhere near there in Summer and on holidays which is when we tend to celebrate.  Most of Jan's crew are getting used to not having cars because they live so centrally.  I can't believe I am even thinking of mobility scooters.  I'd prefer it to be campervans (maybe towing a mobility scooter :).

I will need to look into this "feed my pancreas" idea because it just popped into my head so I have no idea what it takes to feed my pancreas.  Karla would say it was "spirit" telling me something important.  But I was just thinking that since I had so many missing food digesting enzymes in that biopsy long, long ago and since that sort of thing is made in the pancreas and because some nutritionalists still believe in hypoglycemia being a component of some chronic fatigue syndromes, then I should find out what foods are good for my pancreas and find out how it can be cleansed and while I am still into supplements (the D-Ribose came), what sort of supplements would help out a malfunctioning pancreas.  I've been taking advantage of the one-for-one nature of dollars between the US and AUD throughout 2011 but if things revert back to the way they used to be, I may not be able to be so generous to myself.  But I had to try.


Perhaps there may be an option to try something more dramatic as time goes by and the use of anti-retrovirals in M.E. becomes more commonplace.  However the severe die-off symptoms experienced are not going to be any picnic.  I am not sure I could put myself through it by then but you can bet Bond Uni at the Gold Coast will be looking for trial participants.  It is so great that they have teamed up with Simaren Research in the USA.

The Lightning Process Does not cure M.E.

This is in reply to my sister who suggested I reprogram my neural pathways by following up on this web page by Ian Cleary.  Ian Cleary is another person who trains people in the use of the Lightning Process (LP). He is coming to a town near you in Australia.  I have not heard much about the Lightning Process but I keep calling it the Lightening Process because it seems to me to be a form of self-talk that helps change your attitude to something you are experiencing as unpleasant.  It perhaps aims to lighten the psychological load?  If that is what it is then I would suggest it as a coping tool but certainly not as a cure.  Having said that, I probably would not suggest it at all because anyone who charges $$$$ in a group situation for something that most people (the ones claimed to need it) have already learned as a consequence of life is obviously disguising the true nature of the course.

People learn to minimize their pain (all types) by a variety of self-talk techniques.  You pick them up on your way through the books on Healing and self-development that you buried yourself in when you first tried to learn how to cope with Chronic Illness.  After a while, you begin to create your own technique that you can call on when you need it.  We minimize our own pain with self-talk, spiritual talk, meditation, relaxation and things like LP, NLP, EFT and on it goes.  Most of us with true M.E. who have become "seasoned" cases have just about exhausted our ability to learn any more coping mechanisms because now we have cognitive decline way beyond that of our more normal peers.

We are so exhausted that we just let things BE.  Often that is enough. Naturally, we'd prefer to get some real help (as opposed to just another coping tool) because we all so desperately want to be cured rather than in a state of "peaceful acceptance".   We still dream about camping, going overseas and having a social life.  You cannot stop that unless your are clinically depressed and then you would not care about your lack of worldy activity would you?  You (my readers) would dream too if it was you who had a disease that blurs the lines of mind-body medicine by getting down to a biological condition that can change your mind's perception of pain.  But that is only one theory.  The Glia story has yet to mature but we know there is something profoundly wrong with the CNS of people with M.E. (from autopsy) and it is remitting and relapsing just at the times the viral load increases and decreases (my opinion).  It is incredible that anti-retrovirals have not until now been tried on people with the severe case of CFS that is really M.E.(by definition).  I believe I am of that "viral" sub-type.  I believe it started with glandular fever.  Childhood tonsilitis may have played a role.  Oral sabin for polio may have had implications but I am not going to delve into those areas of research today.  But I believe I am sensitive to viruses.

For instance I know my son brought something into this house for a few days that the "normal" person would not have noticed -perhaps a slight increase in fatigue for a few days - but despite minute concentrations of the virus that caused those bad days, most people would not know that it was a virus.  They would not even think about a virus.  They would just keep on living and push past it.  No time off needed for them.  On the other hand if viral M.E is what you have, then no amount of LP is going to change the fact that those few germs your body is fighting off has triggered an all-out battle in the auto-immune-system wars.  I believe that has been my story since I first got married if not before.  I believe my life's dramas have also taken a toll on my adrenal system but if you read the following article, which I am just about to read, you will understand why I do not have much of a reason to bother with paying to learn the Lightening Process or the Lightning Process.  I would rather buy a mobility scooter like a good girl guide who's motto is to "be prepared".



I tried out a Pride Go-Go  Extra Light  yesterday at $1890 as an in home demo but it was bumpy.  I am told none of them have suspension in the pull apart type.  I managed it but it would be no good even around my local streets with their undulating footpaths and bumps down each curb. My street does not even have a footpath.  We do have bike lanes I guess.  It would be great for the shops and the flat paths and boardwalks and the grass is OK.  I tried it.  I had to go up the grass to get to a neighbouring driveway because mine has such a dip the scooter would not handle it.  My car hits bottom there too (or the tow bar).  I was dizzy yesterday and it made me feel carsick just zooming on the scooter but I am ultra dizzy today and now I know it is coming from my back/neck.  You should read about the Lightning Process not listen to me.

The Lightning Process did not work for me. I did the training with Phil Parker himself in Crouch End, London, in November 2006. Not only did it not cure me of my CFS/ME, but it actually initiated a relapse and left me much more ill than I had been prior to starting it. This relapse lasted at least a year and a half, and I have no way of knowing what permanent damage doing the LP may have done to my body and health.

The Lightning Process is billed as a training programme, although the website does not tell you anything about the content of the course. You have to actually undertake the course in order to find out what is involved. You are also instructed not to talk about it afterwards with anyone, including fellow sufferers. My training took place in 3 hour sessions over 3 consecutive days in London, along with 4 other ME sufferers, and cost £560. There was a CD to buy for £20 at the end of the course and follow up phone calls cost £50.

It is a psychological technique. Like Reverse and Mickel Therapies, the LP website is careful to say that ME/CFS is a physical illness, thus ensuring that sufferers will pay attention, but it does not say that the technique is entirely psychological. They provide an explanation about the adrenaline cycle making you ill but it does not appear to be backed up by any actual scientific evidence relating it to ME/CFS.

I completely believed in the LP philosophy at the time I did it and was committed to doing the Process. I did experience some difference in myself in the 5 weeks after doing the training. I wouldn't say I felt better but I was doing much more than usual (as it turned out, far too much) and my sleep quality was improved during that time. But I became very ill again, literally overnight, and I was left feeling much worse than I had been prior to starting the Process. I tried hard but no amount of doing the Process was able to reverse the relapse.

The website says LP was developed using techniques from Neuro Linguistic Programming, osteopathy, self hypnosis and life coaching. However, there is no osteopathic element involved at all. My interpretation of it is as a Mind over Matter technique, akin to the 'psyching up' process that I usually have to do in order to achieve short-term goals, such as going out to the shop or an appointment, or even just getting out of bed in the morning. However the LP encourages you to employ that technique all the time. I know it can work in the short-term but it is not sustainable for any length of time.

LP claims to decrease the excessive adrenaline levels which are causing one to feel ill. However, the effect of the training was to 'psyche me up', virtually constantly for 5 weeks, until my body could obviously sustain it no longer and I crashed overnight into a relapse. I was 'buzzing' during those five weeks; my adrenaline levels must have been dramatically elevated not reduced. During the three sessions I was encouraged and persuaded to believe that there was nothing actually wrong with me and that I could 'coach' myself back to health. Phil told us that we were not really ill but had got trapped into a cycle of thinking and believing that we are ill which sustains itself - i.e. if you concentrate on your symptoms all the time, then you're going to keep having them. You are instructed to stop thinking about your symptoms and to get on with "living the life you love". I was to think of myself as healthy and behave as if I was healthy, ignoring the symptoms and "getting on with it". I trusted in this advice and followed it completely, and as it turned out, to my severe detriment.

My relapse was obviously caused by drastically overdoing it physically in the following five weeks. As an example, on the first day, after our 3 hour morning session, Phil asked the five of us what we were going to do that afternoon. Predictably we all answered that we would be resting up in preparation for the next day's session. He said that was very dull considering there was so much to do in London. As a result, I changed my plan of spending the remainder of the day in my hotel resting and instead visited a tourist site in the afternoon. He asked us next day what we had done and, as I had been most ambitious in what I did, I was singled out and praised. One of the others had gone for a long walk and he was also commended for that. No account was taken of actually how fit or well enough we were to do these things....READ MORE (opens a new window)

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Aching legs ruining my Life


 The title says it all.   Taking strong pain killers is causing problems of their own - constipation -  but when I don't take them I am miserable.  Actually everything is aching including fingers and ankles and I've also lost my energy that I had ever since taking the prednisolone for a week.  I seemed to stuff that up by going out on the weekend for the first time in years it feels like.  I met up with some very boring people at one of those Internet Meetups at Currimundi Lake.  I've done nothing since and have been sleeping the last 2 days and feeling the heat and humidity yet still wearing a scarf for my sore glands. 


My eyes have been blurry and sore but did I tell you that I had my eyes tested to check if the Plaquenil had done any damage?  Anyway, everything is fine with them except for them being a bit dry.  He sold me some artificial tears which make them feel worse. Anyway, enough of me, I have not filled you in on the boys.


S moved out of Dalby St and is now living in Kalua Apartments in Maroochydore.  I understand he is with females or at least one female this time - students I think.  He is still writing garbage on Facebook but I have not had any interaction with him since he borrowed the EeePC.  Also he quit selling Austar in the first week and went back to the Solar panel company so I assume he is still working there.


I had not heard much from B since I went up to visit.  He chose not to reply to any of my hello's on Facebook but he phoned tonight because he came home from work to find he had no power.  St has what they had owing the electricity company coming out of her Centrelink automatically so there has been a mix-up but he went shopping on the weekend and has a freezer full of food which was still frozen except for the icecream.  He phoned only to ask me to log into his Facebook account messages to St where her new phone number was recorded.  I could not help peeking at a few conversations between them and he has been asking her to come back, while she has been asking him to move up to HB but NOT to live together.  On one date B told her he did not want to lose his job and move and I also read that Julie and Steven were likely to move back to the Coast here sometime which I assume is her Mum.  She is still with her Nan.  Anyway they are still intertwined and who knows what will happen in the long-term despite the fact that B thinks she seems to have moved on from him.  They both seem pretty civil especially about Cohen.


B had Cohen this past weekend but I did not catch up with them via Skype.  That has not happened for a long time.


I also found out on the phone that Anthony from work has moved in with B to help with the rent until the lease expires.  He was the one I liked the least (disgusting mouth) when they all came to B's that night for drinks and he is also the one that is in hospital tonight because B was involved in chopping off his finger at work today.  I don't really understand how it happened but it was not B's fault directly.  Anthony was being careless and B was driving a forklift which was moving a length of steel.  Aside from trying to contact his parents (which B couldn't) B was more concerned about getting the power sorted out via St.


Here are the videos from my little visit up there that I did not post last time.  The first one is Cohen doing an imitation of something but I cannot remember what.

This next one is of the present that I took up for Cohen in case I do not see him for Xmas - oh yes I remember reading B asking St if he could go up to HB for Xmas so it looks like I will not get to be with them if she agrees.  Earlier, I asked if I could be there for Xmas with Cohen for once but the chances of that happening seem pretty remote now.

Here's cheers

This is how to do the shuffle - everybody's shuff-el-ing

The last one is when I drove to Glastonbury Creek

Journey on Prednisolone


You know the story - I took Prednisolone for a week and got back my energy so I took the opportunity to visit number 2 son who had become quite emotional about having to live on his own and only see his son every second weekend.  I had a good time except for the last night when he invited mates home.  I was still restricted in what I could do but I certainly did a lot more than I had been.  I had mini crashes after going shopping but I was OK again the next day and luckily I was given the bed since most of the time he sleeps in the lounge with his computer and TV and playstation.  The lounge folds down to a bed like a footon.  How do you spell phooton? Futon? Two of them actually. Futi.  Anyway here are some of the photos I salvaged off my hard drive.

 Yes I know they have red eye but I edited the ones downloaded on to his computer.  His iMac.  I covet that iMac.  But as for my computer, I get a boot screen back in some fashion one day and lose it again the next and I have lost data but I am recovering what I can and uploaded these while I had the chance.  I had a drive to check out the state forest campgrounds  in Brooyar State Forest but they were not suitable because the toilet block was up a hill and I just would not feel comfortable camping there for some reason.  Not that I have any immediate plans to go camping unfortunately - other than in my backyard should the Department painters come to paint inside this unit which could be announced any time.

Catchup

Collingwood did not beat Geelong in the grand final yesterday.  I was a bit disappointed.  S did not stay to watch it with me.  He asked if he could stay overnight Friday night.  He caught the bus down.  Ate the things he wanted and then hit me up for a small loan Saturday.  If I had not have dawdled getting the money, I think he would have left sooner.  He phoned again this morning and told me he left his phone charger behind and then asked me if I had somewhere to stay for a week away from this house.  He would not explain the reason behind his question.  So I have no idea.  I feel really crook. Joints, aches and dim witted.  I was hoping to see B this weekend but now I don't really care.  Had bushfire smoke in the air again last night and it is blowing a gale today despite the lovely sun but I'll be happy enough to dope myself up and and resume life once this pain and zombie-like feeling lets me.  I know he came down this way for the weekend but where he stays and what he does is not for me to know. I did ask if he would call in to visit me. I only got a maybe.

A bit too big for this now May 2011

Speak of the devil - he has been and gone.  He came to borrow money till Wednesday (S said Tuesday).  I am getting in the habit of taking out more money than I need knowing that it will get put back in my account via the Internet (unless it doesn't).  While he was here, I gave him a couple of ashtrays and he told me that just because he loves Stacey does not mean he wants to be with her.  You will see what I mean when you read the excerpt below.  But I am afraid he caught me in the middle of crying.  Just started crying today for no reason and this time I cannot blame Jamie dying or the beta blockers because I have not had any.  I read that my beta blockers can cause inexplicable fatigue and depression you see.  And I hate the sound of the wind in the roof.  You can never completely relax.  I mean - what is that bang that just happened?

I am still glad I got to see my boys this weekend.  I got a couple of hugs and kisses.

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Nick Alderton

hey man i still got the same number call me its your missus that i have no time for not you and the boy, i think of yous all the time and riley would love to see cohen...p.s. give me ya number and i call you if ya like

 ·  · See Friendship · September 26 at 11:19am · Privacy:

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  Lakota Arundell likes this.
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    Bl 
    

    Hey man don't really know what to say. the main reason i stopped talking to u was because of the things u said about Stacey & Cohen and i know u where probably angry but it was just way out of line, im not with stacey anymore but i still love her and probably always will. i just did what i thought was right for my family. Sorry to hear about u and tams must be hard for u and i don't mean this in a mean way but maybe u can now understand what i was going thought back when stacey and i first broke up . Anyways man HAPPY B-DAY i might catch up with u on the weekend im coming down.

    
    

    September 26 at 12:10pm · 

Irritable bowel syndrome and chronic fatigue 3 years after acute giardiasis: historic cohort study

Setting Waterborne outbreak of giardiasis in the city of Bergen, Norway.

Participants 817 patients exposed to Giardia lamblia infection verified by detection of cysts in stool samples and 1128 matched controls.

Main outcome measures IBS and chronic fatigue.

Results The prevalence of IBS in the exposed group was 46.1%, compared with 14.0% in the control group, and the adjusted RR=3.4 (95% CI 2.9 to 3.8). Chronic fatigue was reported by 46.1% of the exposed group and 12.0% of the controls, the adjusted RR was 4.0 (95% CI 3.5 to 4.5). IBS and chronic fatigue were associated and the RR for the exposed group of having a combination of the two outcomes was 6.8 (95% CI 5.3 to 8.5). The RR was also increased for having just one of the two syndromes, 1.8 for IBS (95% CI 1.4 to 2.3) and 2.2 for chronic fatigue (95% CI 1.7 to 2.8).

Conclusions Infection with Giardia lamblia in a non-endemic area was associated with a high prevalence of IBS and chronic fatigue 3 years after acute illness, and the risk was significantly higher than in the control group. This shows that the potential consequences of giardiasis are more serious than previously known. Further studies are needed, especially in areas where giardiasis is endemic.

http://gut.bmj.com/content/early/2011/08/31/gutjnl-2011-300220.abstract

That's interesting since the most painful symptoms I have ever had were bowel cramps which began soon after the birth of my first child.  The diagnosis began with giardia on my newborn son, myself and my Mother who came up to visit (but Mum believes it was the food she ate while traveling home).  Later I was diagnosed with both irritable bowel syndrome and Crohn's disease but I complained about fatigue so much that the physicians were puzzled.  Later on in life there is no sign of active Crohn's via colonoscopy, the irritable bowel and cramps remain but not as severely and the number of prolonged flu-like illnesses increased until they have become continuous.  The malaise and sore glands I now associate with a chronic fatigue syndrome which is better described as myalgic encephalomyelitis.  I wonder if giardia lamblia started it all.  The fibromyalgia pre-dated the giardia.