Scooter Dayz

Yesterday, I took the scooter for a long ride.  I didn't feel well enough to get into the garden or housework and my mood has not been brilliant so I hoped that the outing would perk me up a bit.  I followed the water all the way around to the start of Happy Valley stopping on the fisherman's boardwalk at Bullcock Beach to watch the old guys catching Black Bream along with the rest of the tourists.  It was busy and lively and just what I needed to get my mind off myself. 

There were some hairy paths on the coastal walk and I found out why even the main street paths are never flat but always tilting one way or the other.  It is to create a water course for rain runoff.  From Bullcock Beach I headed up the incline that was the street marking the half-way point crossroad down town Caloundra.  I was finally in a shopping precinct able to browse clothes racks that were out the front of shops without having to stand up.  I could not get inside any shops with the scooter because they are just not designed for it.  I did not really feel comfortable leaving the scooter outside the shops but I did when I decided to duck in to our little Dick Smith for a packet of batteries.  It also means carting all the gear that is in the basket or hanging bag into the shop so that it does not get stolen.  I had a picnic blanket, water bottle and cushion etc with me.

I had a bit of a yarn with a shop keeper which was so easy because I did not have to stand up.  Usually I am trying to cut conversations short even out the front of my own house because I hate standing still so much and I know Brian has been the victim of me being short.  The scooter therefore has a positive effect on social interaction.  Not to mention the many "Good morning" greetings you always get going along the main coastal walking path at Golden Beach.

This is where I parked for a sit on the towel today looking over to where I was yesterday

It was a lovely day again today and I had no money to go to the shops so I headed off on the scooter again.  I just went to the water front locally today, sat on a towel for a while on the grass listening to the radio and just watching people go by.  I felt lonely today and just like I was simply killing time waiting to feel well enough to do something more active (like the housework or gardening) without risking a relapse.  The sun was nice but maybe I would have been better off spending some more time in bed.  I feel a bit 'dead dog'. 

This last photo (via mobile phone) coming up next was on my way back home via a side arm of the Mangrove Boardwalk.  A good place to go if I want a bit more privacy.  There seems to be so much more mud flat than there ever used to be here.  Perhaps it is because it has silted up here that when we get those King Tides, the water often rises over the boardwalk itself.  You know Karla is extremely worried her house will be swallowed up by the water.  But today, the tide was so low, the water was a long way away.

Showers are predicted for tomorrow and I am getting a skin check tomorrow afternoon so there won't be any scooting I will assume.

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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