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)

READ MORE IN THIS WINDOW

He's Moved Out (Take Three)

He wanted to go.  He says he doesn't like me very much.  I didn't feel like I was behaving very nicely either but his constant lack of trust in my decision-making abilities makes me wonder if he would not shove me in retirement village right now if he had half the chance.  I was also told that the only way I would get well is if I picked one pill and just took that one and nothing else.  Let's say I pick the one I am still trying to withdraw from; two years and counting.  An SSRI which I used to help me withdraw from an SNRI a year or so prior to that.  It has been a long haul and what's the bet the rheumatologist wants me to go on an SNRI in February?  First line of approach to pain in fibromyalgia.  That is another story and the one I am meant to be talking about is the son story and the picking of the one tablet.  Now this means that if I get a headache I can't take anything.  If I get diarrhea I can't take anything which is effectively making me more of a shut-in than I already am and even more likely to continue cancelling more and more dental and doctors appointments due to having to remain close to the ladies room. 2012 is looking grim already if I follow his advice.  I am not allowed to trial any potential "cures" unless I give up my drug of choice and switch.  Anyway, you get the picture.  I am starting to become more concerned about my quality of life so if I get any relief from drugs I will take them.  However, I also admit that I am very sensitive to many drugs and experience intolerable side effects which make taking them quite short-lived for the most part.  That seemed to be the story for 2011.  The one I hated the most was Lyrica.

Staying here somehow got my boy over a hump and he made a Christmas for us and for once I really had decided not to bother making a thing given my constant relapses after exertion (which includes standing for long periods).   He did not move on the weekend he said he was going to pick one of two places but why he decided on a place in Buderim with a 21 year old Jewish girl I have no idea.  He has checked out quite a few since he was staying here - using the car of course and never close by.  It was one of the dearer choices.  Buderim is a dear suburb because of its cooler elevation with panoramic views of the Coast line.

On Boxing Day I was feeling even worse.  I was glad Christmas was over.  I wanted to do nothing.  Paul (not Ange) phoned and asked if Connor could come over.  S agreed there and I then agreed for an hour only.  Right on the dot Paul came back and it was just as well because nothing went well.  S decided that the Nerf gun [that Nana and Aunty Deb had combined forces to buy allowing about the biggest one you could get] was inappropriate.  He knew I ordered it so I got the lecture.  He would not participate in putting it together or helping in any way.  Even when I gave Connor his Lego Scorpio, he kept his distance so that I spent the entire hour on the floor working against the time odds, bending over with my dizzy head and generally making myself worse.  It was only an hour but I was in pain and not in a good mood.  Nothing seemed to work properly and when Paul arrived, I let the whole lot of it get taken out the door including the foam bullets!!!

It seemed like such a double standard because I remember not all that long ago, S had his son playing the most realistic war game of its kind at the time - Medal of Honor.  I keep forgetting he has got so strict that he has forgotten how to have fun.  I am surprised that joke even worked on Christmas Day.

( I will add some more vids/pics to the Christmas Day blog too.)

Christmas Greetings

I am not sure what has happened to the videos.  Christmas was OK.  I was going to forget about it because I wasn't well enough to care about doing any preparations at all.  I made things last year despite being sick with that bronchitis thing.  I made rum balls and something quite exotic for the main despite it only being a Roast Turkey Hindquarter.  It wore me out.  Never again.   So this year I did nothing and S did everything so there was no way he could think the food was tainted if you remember that prodromal period in time.  So I handed over the cash and he bought what he wanted.  I had no energy for it anyway.  It was all store bought except for the fresh beans with the Roast Chicken and the oven-baked Roast vegetables needing no preparation.  It was delicious with the Chicken Gravy.  I did not even get around to turning the frozen cranberries into cranberry sauce.  They're still there in the fridge he defrosted for me with the steam cleaner. I am really glad that got done X-mas Eve because it was iced up so much.  I still have never owned a self-defrosting or no frost fridge.

Anyway, lunch itself was yum but my Christmas present didn't come until Boxing Day.  You know the shoes he bought with Aunty D's Xmas money?  Well he took them back because he didn't like them and because he had already lost the receipt, he had to do an exchange and there was nothing there he liked so I ended up with a second pair of runners in a size larger than I normally wear which are actually alright.  I guess he still has the shoes he half-cooked in the oven and yes the smell is now gone from the oven, but he still needs new shoes for work.  I have no idea if he 'really' approved of the T-shirts and I know he did not like the colour of the towel Nana also gave him.  He wore none of the T-shirts while he was here.  He is getting harder to please but he said he liked them.  

B said Cohen got heaps so he has not missed the presents from our side of the family.  I hope I see them soon but B will be going back to Gympie to work with Roger. B posted these photos from his phone on Facebook.

Last Dentist Appointment Isn't


Been taking it easy doing nothing much so that I would have the energy to go to the dentist today.  It was supposed to be my last one and it was supposed to be the last month of the Enhanced Primary Care scheme (EPC).  Was originally told that the Government was too broke to continue with it but luckily for me it has been extended until March.  Not that I want to go to the dentist again.  God (or something) knows it causes me so much stress and pain just about every time I go.  Even cleaning my teeth had me jumping out of the chair for one tooth in particular.  I still have money left to spend in the scheme and she announced today that a filling had broken off and that I will be coming back to see her again.  Jan 5th.


Anyway now it is the end of the day and I can tell I have done too much - I went visiting and for a quick shop locally while I was out.  I have that violin-string feeling to my heart beats and the really blurry eyes I am learning to recognize as an earlier warning sign.  I have become more noise intolerant and the computer screen seems so bright that it sort of hurts but the panic attack kind of feeling I had for 2 days out of the blue has gone as fast as it came.  Maybe the couple of beers helped.  I got all relaxed and floppy.  I cannot drink wine or spirits but beer did not seem to hurt any the next day (today) because I increased my water intake to compensate.  I have to wonder what caused such horrible anxiety but trying to disperse that crazy energy by going for a dip and walk in the waters of Pumicestone Passage the day before that helped with the anxiety but it caused a physical crash by the afternoon.  I only went out for an hour including getting there and back and I had to lay around for the rest of the day.  After today's activity, I wonder what the next few days will be like.  I hope I am pleasantly surprised after having a good night's sleep but I will have to go out again tomorrow - this time to the doctor - scripts before X-mas and that referral for next year to a rheumatologist which is already booked.  I'll be out of pocket quite a bit after just the initial consultation.  He had better be an improvement over the last one who refused to accept Myalgic Encephalomyelitis as a better terminology for what ails me than CFS.  He was a muscular-skeletal kinda fibromyalgia man and I don't think he realises that the brain anomaly research shows changes in people with fibromyalgia that are also being found in people with M.E. (not including those who are just temporarily post-viral or fatigued from being depressed).  If the new rheumatologist is old-fashioned too then I will have wasted my money.  Enough of talking about me.


S says he is moving into some place on the weekend.  He has a choice of two.  We shall see if it eventuates. You can guess he will pick the more expensive one that reminds him more of being successful in life.  He works every afternoon and he sounds quite professional when he rings in his leads.  No-one would ever guess that he has these misleading intuitive sensations that are illogical yet which he bases his life decisions upon.


I got a Christmas card from Mum with some raffle tickets in it - just got to win the car so S can have mine.


B has awful money problems all of a sudden because instead of shutting down their workshop for one week, his workshop decided to leave early and make them all take 2 weeks off without pay and for his last pay they pulled a surprise on him too.  He has been getting his forklift ticket through them and they took the cost of it out of this final pay packet.  Simply put, he has not got enough money to pay the rent.  I will be helping him out which is going to mean a leaner X-mas but it will be fine thanks to my Mum and sister being very generous at this time of the year.  B has already had the Internet cut off.  If he had known this was going to happen he probably would not have renewed the lease on the house but he did so he cannot go and move in with his father.  I guess it is only for three weeks but three weeks is a long time not to have any income.


R won't have any money because he put some more in my account for child support back pay.  That is why I have my ipad already. The ipad is great for bed - for when I can't hold my body up at the computer desktop.  Nevertheless, I still prefer to sit cross-legged on the office-chair for postural reasons.  I can easily put my neck out trying to jack myself up a little with pillows in bed or even on the day bed.  But at the same time, I know my body gets its energy back faster when I am at least semi-recumbent rather then sitting upright.  Lying flat is the best of-course but it can get boring so it is better to be blessed with sleeping through a crash.  Some people cannot sleep more than a couple of hours a day and if you are in pain it is pretty cruel to have to stay awake for 22 hours out of 24.  My sleep may be way too shallow but I am thankful that usually I can get myself to sleep.  I have my own technique even when I am in pain.

I've Been in bed since breakfast

He's been phoning and it has not stopped yet there will be more to come and I have been in bed exhausted.  He has moved his gear in to the new place because he had to move out of Kalua apartments but he says he is getting his money back tonight and then I am supposed to drive up and get him and his gear so that he can stay here (for nothing) and get back on top of things again...for a week or two.  The thought of having to lock myself in my own bedroom with the door shut in Summer so I can not be disturbed by him being here...oh no the phone...yes it was him, in an hour I meet him at the Shell at Kawana (he's been doorknocking all day around Bokarina), head to the new place, meet Eric at 5.30, and pack his gear in my car and come back here to live - thanks Mum!!!  It is 4pm now.  Yawn, I'd better eat something.

Family and CFS don't mix well

He arrived on Thursday.  I just drove him back to MaroochyD in crash mode which is a bad thing to do but he could not even borrow my car to use it to move because his license has not been renewed.  I crashed badly last night, falling asleep before tea and too drained to even move from the day bed to my real bedroom.  He clattered about but the next thing I knew it was 1am and it was then I realized I had had nothing to eat but I went to my bedroom and slept again.  Dizziness plagued every step.  I woke up the same way this morning.  He only started to worry when I broke down crying after his reminders to take him to move house and he did not feel very good about asking me to take him after that.  Before that, he simply expected me to.  By the time I got up, he had completely emptied my car of its camping gear etc which now is in the middle of the garage floor....meaning I cannot get my car back in and it is left for me to sort out....maybe next year????

We argued the whole morning and were both emotionally spent but in the end I had to take him if he was to meet his new landlord Eric (the owner) by 11am.  He sent me on a wild goose chase which, to cut a long story short about the annual toys for charity bike ride, meant driving the longest route possible.  We got to the house and I parked under the shade sail with the doors of the car open so I could put the seat back and sort of doze while he paid his money and signed forms.  Some dodgy-looking blokes rocked up in a car to speak with Eric and drove off again and it was at that point that S said that his teeth shifted in his head.  This has no meaning to you or I but it meant that he no longer wanted to move into this house because he is worried about his teeth not being straight again. He told me to look at them.  (They looked the same to me).  How anyone can use their teeth to predict bad vibes I have no idea but he had bad vibes.  Eric had since left and given S the key.  Someone else is moving in during the week as well but it seems S has the tiniest room and it has bunks in it that have to be dismantled.  At this point he did not know what to do so he had me take him back to the old apartment with the pool and his 50 year old housemate Evva (I thought he had said Heather before today).  It turned out she has a car so she could help him move his gear...... so my car was emptied out for no reason and he is entitled to stay there tonight which I reminded him about when he phoned asking me to come and get him.  He was the one who sent me home again saying he would handle the rest and an hour after me arriving home here he is phoning me up again.  Anyway, I had no petrol and even less energy left so I have not gone back for another hours worth of driving up and back.  I don't know what he is going to do but I told him to sleep on it.

It has been pretty dramatic around here since Thursday and his arrival.  I was angry that his distraction, anxiety and irrational thinking has never been admitted to so I was lecturing him and he was lecturing me about pushing myself more to get "cured" from M.E.  He also tells me I must give up coffee and use a cup and saucer to ween myself off it because that is my heritage (remembering afternoon teas when Nana has visitors). Meanwhile he has consumed twice as much of my coffee since he has been here and all my cheese is gone etc etc etc.

When I got all the gut problems back yesterday morning he was a lot more sympathetic because I guess it is easier to identify illness when I am heading in and out of the toilet a million times.  But the rest remains invisible.  Gut problems or not, yesterday afternoon was when Connor was due to be picked up after S had done some door knocking around my PW Avon territory if you remember that area.  I have to give him credit for his effort to make leads (5 Friday and 5 yesterday morning) but as it turns out he is not paid for anything unless a sale goes through.  No base retainer at all.  Another lie?  As you can imagine a lot of leads turn out to be dead leads because husband will not agree or vice versa or the telephone number given for contact is dodgy or whatever.  But he occupies himself with this sales position during the day when he is not studying.  He is about to embark on Business Law despite missing one of last semester's exams.  He knows his life is a mess but you know how he manages to blame everything other than himself for that.

I cannot find my lovely camera (even with the car totally cleaned out of gear) so I could not take decent photos of s in his uniform or Connor putting up my little Xmas tree for me.  No videos this year.  I will put what photos I have in here soon so come back to this entry to find them.  It seemed to be up to me to entertain Connor yesterday for the couple of hours that he was here.  However, we all had a shared session on the Wii playing Mario cart - a cute driving game.

It is fairly obvious that S does not think his own son likes him much and he is now reluctant to have him at all unless he has money to take him somewhere or buy him Macca's.  I tried to explain that all you need to do is give him your attention and do joint activities.  That is why I bought grandson Connor another Lego Hero for Xmas so that he and his Dad can build it together on Xmas day if they happen to be here.  Anyway you know how hard it is to convince S of anything he has got in his head so I can see Connor having much less contact with his Dad - it certainly is not happening every 2nd weekend like it used to and it also depends upon where S is living at the time.  The blue and yellow house was fine because Chris used to entertain Connor there a lot.

There is so much more I could tell you about this latest visit from S and how it is probably going to cause another week of bad health but what is done is done.  I can only hope that he does not come back here to live because that is what he suggested today along with paying for his lapsed license and using my car to get him around to his door-knocking areas.  He sounds fine organizing and arranging appointments etc on the phone but he is not.  I do not think it is bipolar Mum.  Paranoid anxiety with Aspergers thrown in or just plain old borderline schizophrenia.  Whatever it is, he wants to beat it himself without meds just like I thought I could heal myself of myalgic encephalomyelitis, fibromyalgia and the rest.

By the way, Roger just had his 60th birthday party (yes early).  Neither S or I got invitations.  B told me I wouldn't because of Bev but S should have got an invitation whether he would have gone or not.  But when Ange came to pick up Connor she told me they went to his party.  She is pregnant again!!!