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!!!

Myalgic Encephalomyelitis Defined

based on the recent International Consensus Criteria available at http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract

Can you complete an activity reliably, repeatedly and safely?

........to be completed reliably, repeatedly and safely, otherwise the individual is considered unable to complete the activity." Ref:


Good words to remember when applying for disability services so I pasted them in for my telephone interview with Kabbarli.  Am I reliably, repeatedly and safely able to vacuum for instance?


Am I reliably, repeatedly and safely able to walk further than to the toilet and back?  If not maybe I should buy one of these.  It's been a bad year when you find yourself thinking mobility instead of campervaning.

travelscoot

Kaye found an even better (and more expensive) portable scooter called the Luggie.  Watch the video on that page.  Looks brilliant but heavier.

ADSL 2+ Speed Tests

Recorded for Complaining to Telstra

[`[*Test Results from Oz Broadband Speed Test*]`]
[(----------------------------------
Test run on [*22/11/2011*] @ [*10:40 PM*])]

[(Mirror: [*Optus*]
Data: [*3 MB*]
Test Time: [*4.98 secs*])]

[(Your line speed is [*4.92 Mbps*] (4915 kbps).
Your download speed is [*614 KB/s*] (0.6 MB/s). )]

http://www.ozspeedtest.com/bandwidth-test/results/18686722

[`[*Test Results from Oz Broadband Speed Test*]`]

[(----------------------------------

Test run on [*25/11/2011*] @ [*05:17 PM*])]

[(Mirror: [*Telstra Bigpond*]

Data: [*3 MB*]

Test Time: [*3.73 secs*])]

[(Your line speed is [*6.56 Mbps*] (6564 kbps).

Your download speed is [*820 KB/s*] (0.8 MB/s). )]

[`[*Test Results from Oz Broadband Speed Test*]`]
[(----------------------------------
Test run on [*01/12/2011*] @ [*12:56 AM*])]

[(Mirror: [*Telstra Bigpond*]
Data: [*3 MB*]
Test Time: [*3.74 secs*])]

[(Your line speed is [*6.56 Mbps*] (6555 kbps).
Your download speed is [*819 KB/s*] (0.8 MB/s). )]


[`[*Test Results from Oz Broadband Speed Test*]`]
[(----------------------------------
Test run on [*02/12/2011*] @ [*02:17 PM*])]

[(Mirror: [*Telstra Bigpond*]
Data: [*3 MB*]
Test Time: [*3.35 secs*])]

[(Your line speed is [*7.31 Mbps*] (7315 kbps).
Your download speed is [*914 KB/s*] (0.89 MB/s). )]


Saturday

[`[*Test Results from Oz Broadband Speed Test*]`]
[(----------------------------------
Test run on [*03/12/2011*] @ [*12:33 PM*])]

[(Mirror: [*Telstra Bigpond*]
Data: [*3 MB*]
Test Time: [*4.64 secs*])]

[(Your line speed is [*5.28 Mbps*] (5284 kbps).
Your download speed is [*660 KB/s*] (0.65 MB/s). )]

NB. All times are one hour ahead of Queensland time

MyNetFone on same exchange

http://speedtest.net/result/1823735534.png

http://www.speedtest.net/result/1824800794.png

Broadband Speed Test Results

Test run on 10/03/2012 @ 07:39 PM

Mirror: Optus
Data: 3 MB
Test Time: 1.91 secs
Your line speed is 12.85 Mbps (12846 kbps).
Your download speed is 1.57 MB/s (1606 KB/s).

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.

Last Days in Gympie?

He phoned because he was so miserable.  Having Cohen every second weekend is making it worse for him and living in that house without a family has been really getting to him.  I'll guess that he is depressed and begging for her to come back probably made it worse.  He was so upset on the phone.  He didn't want to give Cohen back and has in fact managed to keep him for much longer than the weekend because she got kicked out of her Mum's house.  She also let the registration fall on the car so he has no car now until his Dad comes to the rescue with 4x4 dual cab which will have to be painted etc.

He has Cohen until Sunday which means that he has not been going to work either but he cares little about work now that he realizes that he wants to get away from Gympie.  None of his friends are there and without his family there it now means nothing to him.  He phoned me to see if he could stay here after his lease runs out on Dec 10th but already things have changed.  He wants to move to HB to be closer to Cohen and also because it is clear that she will not live in Gympie again.

It is a real shame that he is going to give up that job but to tell you the truth, I would not want to live there by myself either if it was me.  Roger wants him to forget her and move on.  Most people do.  He insists it is for Cohen but I know his feelings for her are so emotional that he really cannot be sure what is tormenting him about her moving on.  But now that she has given her approval to him moving up there, albeit in separate accomodation, I think that is what he will do.  She always did want him to move there since her mother moved there.

If he came back here to the Coast then he would hang out with his binge drinking mates especially if he was feeling miserable about losing the closest thing he had to a family life.  The only thing I have suggested is that it would be better to line up a job before he moved anywhere but now it looks like his Dad will be the stop-over point between leaving his current house and moving on to the next.  There seems little point in renewing the lease.

Today he has renewed enthusiasm because he also is saying he is going to give up smoking and drinking for New Year for Cohen.

As for me, I still feel very ill and I cannot see how having that son of mine living here would help me much.  I cancelled another dental appointment because I still have not recovered from last week.  My glands flared up even more, strange neck symptoms and I wondered if it was fibromyalgia from holding my neck muscles open in the dentist chair but it feels more like a virus to me as per usual.  Stiff, swollen inside neck, dry eyes, dry mouth and throat, still that burning, aching joints and muscles (often unbearable), light intolerance and terrible trouble with regulating my body temperature.  I can be sweating and using a foot warmer all in the one day and I am still wearing a scarf around my glands.  I wish doctors made house-calls.

The other one started a new job selling Austar this week but he was about to move house when I spoke to him because he is fighting with Pete.  It is a better reason than my health so maybe that means he is not making psychotic connections this week.

This year has been a hell of a ride

What is this native tree? (Tropical Birch is in foreground)

I know I am crashing when my eyes get sore and gritty and burny and I am forced to persevere with squinting if I am to entertain myself at all with the computer.  I get jumpy when I crash too.  Little things give me a fright. Noises can be aggravating.  

It is really hard to define how it really feels when you are ill with something no-one wants to know about.  You can be suffering so deeply that you know your body is struggling but it is hard to describe the symptoms.  They are so many and varied but we know that Myalgic Encephalomyelitis is multi-systemic in expressing its neurological breakdown.  When I am going to crash I often can't warm up even though I know I should not be cold.  I can wear a singlet because of the heat and a scarf at the same time because my neck has been sore all year in varying degrees.  It can be sore in a viral way like sore glands or it can be sore in a muscular-skeletal way especially if I lie on it the wrong way and wake up to those strange sensations I get in my head that I only know how to describe as dizziness.  All I have to do is change a facial expression to produce a sensation of disorientation.

I know I am crashing when I get cold feet and lie in bed for hours waiting for them to warm up.  My body often needs a helping hand.  I use wheat bags and such-like when I have the energy to attend to myself.  Many times I just lay there because I am desperate to be horizontal and cannot push myself to tolerate the dizziness or the heart that will race like mad once I stand up. And I am just as likely to feel faint from doing that.  As well as loud, fast beating there seems to be a vibration inside every single cell that I can feel or a rapid hyper mini contraction of all muscles at once?  I have no idea what it is but sometimes my eyelids flutter a lot when I close them and things just feel shakey all over but it is imperceptible to the eye.  "Molecules in motion" I have called it and I wish it would stop.  It will.  It always does after I rest completely which means sleep.  How much sleep and rest I need depends on the severity of the crash.  For the past two weeks I have been able to go out a couple of times a week with crash days in between.  Many experts would say I am therefore doing too much too soon.  Nevertheless I have felt obliged to keep my dental appointments especially if I am not going through another feeling of being in a panic attack physically but not mentally.  If I can mentally cope with the anxiety I always have about feeling the drill (gained from past experience) then I definately put on a brave face and go anyway but I am starting to become aware of what it is in these kind of experiences that is causing the crash I have the next day.  The bottom line is adrenaline.

It is adrenaline that makes us feel nervous about going to the dentist, I would assume, so I expect my heart to race then.  It usually settles down once I am in the chair just like it does for you.  But yesterday I wasn't particularly nervous.  Sometimes I feel unreasonably nervous and I then think something chemical (and unexplained) has kicked in to cause this.  But I was just "normal nervous" this time.  I had already had a root canal in the tooth that was getting a post put in it in preparation for a crown.  I was very relieved to find that indeed the tooth was dead to pain.  Not so the gum.  Don't like those clamps and metal wedges.

When it was over, you could not wipe the smile off my face.  I had not been too bad that morning but the day before I wondered if my body would not be better off having a bit more "no stress" before challenging it with my natural nervousness via a dental visit.  The sore blurry eyes hadn't settled from the last crash (which resulted from nothing more than shopping at Pelican Waters and meeting Karla for lunch there).  What is it that I am doing that my body sees as stressful while I am out?  I laugh a lot and talk a lot.  Yesterday after the dentist I smiled a lot and I told someone how elated I was feeling now that the dentist trip was over.  I felt lively and I had several phone calls.  Instead of sitting down I think I paced while talking on the phone for over an hour.  I am starting to become aware of my own adrenaline surges that are causing the crashes and they mostly occur when I am having fun!!!!  Call it an adrenaline high but if that is what keeps me bubbly and laughing and feeling good, no wonder I got addicted to it.  Some how regardless of my problems with my heart rate going up too much when I stand I think I also have to learn how to be happy without being "exited".  It is like asking me to undo my personality.  I am happy when I am exited and anticipating or experiencing something nice.  I can feel exited by just stepping outside of dentist not to mention how animated I become when I wake up feeling like it is going to be a good day!  It seems people with M.E. have to be wary of extremes at either end of the continuum.

Back to the present - aching all over, sore throat, sore eyes, sore glands but not too dizzy today.  Nevertheless I can feel my body crying.  It is a pain that I can ignore by keeping occupied but it is a little too much pain for me to just lie there and put up with.  My body would appreciate as little sensory input as possible but for the pain I need to keep feeding my body with sensory input to use as distraction or find a pill that works enough so that I can lay in comfort. I am not good enough at meditation to co-exist with all levels of pain or transcend it.  I can usually get myself into a state where I can go to sleep but not always.  There are many fighting for our rights to the strong pain killers that are not denied to people with cancer and AIDS and MS or some other recognizable physiological illness.  Why should we be treated any differently?

Number One Son
He has not moved house.  He phoned and he had a bad case of verbal diarrhea complaining about everything but I could not understand what he meant except generally speaking things are not the way he wants them to be.  I do not know what his complaint about his house mates are but I think he feels left out.  He asked me how I was and luckily I said I was feeling better that day because he has taken it as a sign that he does not have to move out for at least a week.  It seems he is somehow concerned with my health and having to push me around in a wheel chair yet how this connects to him moving to another share house I have no idea.  He makes connections that none of us would make.  He also asked me if we can move to Melbourne again.

Number Two Son
He has been distant the past couple of weekends not going seeking out a chat online but I caught him online this morning very early and the story I have been told has been changed from "I barely think about her" to "I miss her."  Poor man.

Amberlin Wu by Dr Dolan

Today, one more spirit dances. She dances without her body. Others must live, and continue dancing together, ready to fight, ready to love. 

Dr Dolan reports:

Please, let me tell you a story.

Amberlin Wu was born a strong spirited child, ready for the world ahead of her. She had passions to become a leader, a lover, a healer, a dancer. So much inside of her. She, like so many, became ill at a very young age. She was diagnosed with Chronic Fatigue Syndrome. She was pushed around in the medical system, and the more that she needed help, the more battle scars she began collecting. You see, our modern medical system is full of too much ego, and not enough compassion. Amberlin’s illness was a mysterious one, and doctors brushed her off when they did not have the answers. Amberlin, like so many of us, once thought that doctors were there to help you through your process of illness. She believed that people became doctors because they were compassionate. 

Amberlin was so compassionate that she herself even attended medical school at one point. She was too ill to continue, so she danced. But then, she was too ill to continue dancing, so she began advocating. She fought for the rights of all people like her, with this mystery disease. But when she went to rally her medical troops, her battle field was nearly empty. ...Where were the doctors she grew up with? Where were those healthy allies she had devoted so much of her life to? She was pushed aside by so many people she trusted, and thus began her collection of battle scars. Ironically, she prepared for a war, ready to face the opposition on the other side of her; little did she know that her battle scars would come from her own side of the war. The sad thing is, when we become so ill that we need our friends and neighbors to carry us, we have a hard time fighting a fight. And without the support of the medical community, she faced a losing battle, against her own team. 

Still, she did not give up. She began finding little peaks of light in the corners of this dark battle field. She began finding other wounded fighters like her. She stretched her arms and extended her own light into the souls of these other fighters. The more that she shared her light, the stronger they became. In turn, these other wounded soldiers shared their own light. And a miraculous thing occurred. A light. 

A beautiful light.

Among the wreckage of this dim army, began to grow a seed of light, that grew to a garden of hope and strength. She was connected to them all, every last beautiful bloom, Amberlin was connected. She began to see an army forming. People began rising above their suffering and bringing their voices together as one harmonious chorus. “Louder. Louder. Sing your truth, louder!” the people cried.

An army arose, a beautiful brigade of invisible fighters. There were children, mothers, fathers, teachers, and yes, even some doctors. Together, they were strong, and Amberlin was on that very front line. The people beside her, the people behind her, the light all around her. “Share your stories, tell your truths!” she cried again. “Tell your truths!” The people began holding hands and marching forward. They shared their truths, and they shared their growing light with the world ahead of them. Amberlin, along with so many, now had a mission; a dangerous, scary, magnificent and valiant mission. One with hope now, and one with a real army. An army of survivors. 

Together they were strong! And together they remain strong. ...Amberlin grew too weak to continue fighting this war for health and compassion. She, like so many others, began her completion of this circle in life. Her own personal battle was fought, and she fought so damn hard. She was a true soldier, a warrior... a hero. My hero. Amberlin, my hero forever. 

Read More

Amberlin Wu by the rest of the M.E. community

Amberlin touched so many of those suffering from ME/CFS. As part of a large online community she reached people the world over by any means available. Even through her suffering, her bubbly personality shone bright. To have been touched by her is to have been blessed. In an unabashed manner, not often seen in the ME/CFS ill, Amberlin championed awareness through her advocacy, blogs, local support group, t-shirts, poetry, art, funny videos, as well as a very personal hospital stay online.

Read More

Amberlin Wu's blog

She and I were contributors to Art for M.E.

He bought a pair of reading glasses

He has 20-20 vision, did not need them for that.  I think he just wanted a pair and he went to an optometrist who was happy to oblige no doubt.  He says they are corrective and will make his eyes stronger and that one eye is different from the other.  He paid top dollar too.  Oh...and he also wants braces for his teeth to straighten them.  He has been saying that for a long time.

Also I led you astray saying it seemed like a house of students/study at Dalby St.  It seems the others have jobs.  One may be studying part-time.  I can't remember.

I'm having another bad day and I'm going back to bed now. I'm supposed to be posting his phone charger back.

And guess who is going to be paying for the tooth to be fixed until such time as he can.  It is getting fixed tomorrow.

S thinks this might work


I hereby absolve Scott and his teeth of all consequences stemming from the unfortunate circumstances of his parents that have lead to more unfortunate circumstances in his life. Signed his mother


He is a bit schizo right now and does not notice that part but he is still trying to work out why things keep going wrong. His tooth broke today and he has been pedantic about looking after them and does not understand what is going on. He thinks he will have to leave the house he is living in. He has been bugging me all morning to write something that will clear the past.


This is his version " I would like on any part the best for his healt in any reagin we have not been able to be correct or strong enough to have him in any proceeding misfortunes as best let bygones be by gones in the name of his mother Judith Glenda Peters Frizzell"

Make a digital signiture with word it is on the word "top left under prepare" button under prepare.

I would like on any part the best for his healt in any reagin we have not been able to be correct or strong enough to have him in any proceeding misfortunes as best let by gones be by gones and all blood be left un written in the name of his mother Judith Glenda Peters Frizzell

thank you mun love ya

9:56am

I Judith Glenda Frizzell would like to ensure that Scott's health is the best it can be despite any areas of life that I have not been able to correct in my life or strong enough to prevent from being carried on down the family line, letting bygones be bygones which in no way affect his future.

put in the blood bit they love that

stuff

we married in the a family of vampires I am sure

put in the blood bit

dont take it personally blood like blood money blood!

I Judith Glenda Frizzell would like to ensure that Scott's health is the best it can be despite any areas of life that I have not been able to correct in my life or strong enough to prevent from being carried on down the family line, letting bygones be bygones which in no way affect his future using my blood oath as surety.

perfect

10:00am

bingo

put oath in inverted commers

no blood in inverted commers and explanation mark after oath

see love ya

even two explanation marks would be good

or better

our Generation

post it a professionally as you can

10:06am

I Judith Glenda Frizzell would like to ensure that Scott's health is the best it can be despite any areas of life that I have not been able to correct in my life or strong enough to prevent from being carried on down the family line, letting bygones be bygones which in no way affect his future or the future of the following generation using my "blood" oath!! as surety.

He said thanks so he is now somewhat placated.