While you're in Marysville, here's some more slides

Mum, I hope you had a lovely birthday yesterday and that Marysville looks a bit better now after the Black Saturday fires.  I checked the town out on Google Maps street view but their maps are usually old and there was still plenty of evidence of rebuilding and half-dead trees.

I feel a bit better today but only a bit now that I have been up all morning.  The head stuff from withdrawing from Tramadol is not as bad today but I am still getting light-headed and breathless from talking and walking.

I complained about the painters and the fan installation ruining the new paint yesterday via a phonecall and today someone from the Department came to see for themselves.  I think I will have workmen back here again soon which is the last thing I really need.  But I would like it fixed and the doors that won't shut.

I also got a phone-call from firstborn asking if he could come down as arranged.  I did actually agree to him staying overnight IF he was working in Brisbane Thursdays and Fridays but he wants to come anyway.  I said "no" if he is not working.  I just know he is going to ring back and maybe even arrange to work even though he said he wasn't going to take the job.

He still sounds like he is going through a "things are not working out for me" phase again.

Hey Zena (do you still want me to call you that?), now that you are footloose and fancy free, how about getting into scrap booking with all these old photos.

UPDATE: I just lay down for a rest and in walked you know who.  He's not sleeping and waking up with jolts and he wants to stay to organize work.  That was probably a lie, the work part, because as soon as I said "No!" he stopped mentioning work.  Anyway I was thinking it was Wednesday before so if he had any chance of getting that work back he should be there today because today is Thursday after all.  I always lose track of days when I am out of touch with the world.

I don't think him taking a job like that is going to fix anything while he is complaining he cannot relax.  I was like that yesterday and I have learned to lay low on those days not try and analyze or fix things.  It means you have to feel the anxiety for as long as it lasts and try not to take it too seriously and if you have any meds that help, you may as well take them and stop again tomorrow.  With S though he is young enough to still be thinking he is useless if he does not sort out his problems right now.  Maybe, maybe not.  But I have learned that if things don't come naturally because you have not got a gift in that area then forcing yourself is the worst thing you can do for your health.

I agreed to him staying three hours and he tried me to the bitter end for longer.  He checked his email that had not arrived, and wanted to check the TV but I am not sure why.  I could have used some help because I went and got groceries mainly to get out of the house.  He said he was leaving probably before I got back so I asked him to lock up.  I was so puffed out I sat in the shopping centre for a while for a while to recover a bit.  And then some more outside because it was raining and I had to wait for a break.  I even came home via the local boat ramp and sat there for five minutes or so but he was still here when I got back.  "Can I stay the night?", "No".  I know he was troubled and I felt mean having to say it over and over.  I did not ask for help getting the groceries in and now I have gut cramps again.  They had stopped.  I now think most of my gut problems are to do with brain signals to the gut - neurological, and my brain did not like all this activity.

He left at about the right time and I went back to sorting the fridge.  A few minutes later he was back.  "May I watch the five o'clock news?"  They can't get the channels up there.  "OK but then go".  Then all of a sudden he decided to leave before it had started.  One bin is out - he took out one of them.

All this has been happening as I sit here - I have posted it several times but something else keeps happening so I have to update the update.  He came back yet again.  He said he forgot his wallet.  He stood there watching the news for half an hour, received a phonecall from the Coffee Shop boss who told him that he can have the job but it will be next week now, remembered that he had not paid at the servo suddenly and took off again into the dark by now.  He seems happy now that he has Brisbane to aim for.  No sea to dip his toes in but plenty of girls and life and even if he has to "do time" sleeping in the tray of the ute, so be it, until he finds a place down there so he says.  Once again, he has a plan.  He seems much happier.  Phew!  I am not particularly convinced he has a gift for doing dishes, going by some of the efforts here but he does them whenever he is here and he thinks a lot while he is doing them I suppose.  When he left this time, he took the second bin out.  Yay!

Long-term weather report on channel 7 news for Queensland.  Does not sound good for you if you are planning to visit, nor my electricity bill, nor for trips out into the sun on the scooter.
Other forecasts say Winter is going to be warmer than usual down your way and our minimums will be higher.  Go figure.  OMG a car in the drive.

He forgot his washing basket.  He's been shopping.  Went to the toilet.  OK Bye.

Car won't start. One chop each for tea.

8pm - Roger is coming to look at the car tomorrow and S is staying the night after all.  Isn't life funny?

Meds I have taken - so I can check interactions

Trifluoperazine (Eskazinyl, Eskazine, Jatroneural, Modalina, Stelazine, Terfluzine, Trifluoperaz, Triftazin) is a typical antipsychotic of the phenothiazine chemical class.

The primary application of trifluoperazine is for schizophrenia. Other official indications may vary country by country, but generally it is also indicated for use in agitation and patients with behavioural problems, severe nausea and vomiting as well as severe anxiety. Its use in many parts of the world has declined because of highly frequent and severe early and late tardive dyskinesia, a type of extrapyramidal symptom. The annual development rate of tardive dyskinesia may be as high as 4%.^{[citation needed]}
A 2006 study suggested that trifluoperazine may be able to reverse addiction to opioids.^[1]
A multi-year UK study by the Alzheimer's Research Trust suggested that this and other antipsychotic drugs commonly given to Alzheimer's patients with mild behavioural problems often make their condition worse.^[2]
 MY EXPERIENCE:  I have never had any side effects using it in the past for anxiety. At 1mg twice a day I do not get any sedation like it warns on the packet. And it seemed to help with dizziness rather than cause it.  I often feel like I could benefit from taking this in what the doctor told me was a homeopathic dose because it was so low.  I was prescribed this drug while I was pregnant and that would not be done in this day and age.  I have taken it for a few weeks at a time since then and always thought that it helped get me through a bad time but last time I asked for it I was not able to convince a doctor to prescribe it.  I have since tried an atypical anti-psychotic as an experiment for a day or two and had too many side effects to tolerate so I would much prefer to risk tardive dyskinesis with this medication.  However the drug below might be worth asking for.  They are in the same class.

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Prochlorperazine (Compazine, Stemzine, Buccastem, Stemetil, Phenotil) is a dopamine (D2) receptor antagonist that belongs to the phenothiazine class of antipsychotic agents that are used for the antiemetic treatment of nausea and vertigo. It is also a highly potent typical antipsychotic, 10-20x more potent than chlorpromazine. It is also used to treat migraine headaches. Intravenous administration can be used to treat status migrainosus.

CAUTION: Not to be used with:
Reductil (sibutramine hydrochloride) Australian prescribing information. Abbott Australasia Pty. Ltd. March 5, 2004.

Consider using for non-psychotic anxiety (web MD Drugs and Medication Search).

MY EXPERIENCE:  I have never had any side effects using it on an occasional basis for nausea and dizziness. At 5mg I do not get any sedation like it warns on the packet.  I never thought to use it for Serotonin Withdrawal Symptoms of spatial jerking and distortion but In the UK prochlorperazine maleate has been prescribed to alleviate the symptoms of labyrinthitis, which include not only nausea and vertigo, but spatial and temporal 'jerking' and distortion^[5]

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Tramadol hydrochloride - Apo-Tramadol,Zydol (50mg), Duratram (100mg) in Australia (trademarked as Conzip, Ryzolt, Ultracet, Ultram in the USA, Ralivia in Canada) is a centrally acting synthetic analgesic used to treat moderate to moderately-severe pain. The drug has a wide range of applications, including treatment of rheumatoid arthritis, restless legs syndrome and fibromyalgia. It was launched and marketed as Tramal by the German pharmaceutical company Grünenthal GmbH in 1977.^[1][2]
Tramadol is a very weak μ-opioid receptor agonist, induces serotonin release, and inhibits the reuptake of norepinephrine.^[3][4] Tramadol is converted to O-desmethyltramadol, a significantly more potent μ-opioid agonist. The opioid agonistic effect of tramadol and its major metabolite(s) is almost exclusively mediated by such μ-opioid receptors. This further distinguishes tramadol from opioids in general (including morphine), which do not possess tramadol's degree of receptor subtype selectivity and which are much stronger opiate-receptor agonists. Similarly, the habituating properties of tramadol (such as they are) are arguably mainly due to μ-opioid agonism with contributions from serotonergic and noradrenergic effects.

Tramadol is also molecularly similar to venlafaxine (Effexor) and has similar SNRI effects, with antinociceptive effects. It has been suggested that tramadol could be effective for alleviating symptoms of depression, anxiety, and phobias^[6] because of its action on the noradrenergic and serotonergic systems, such as its "atypical" opioid activity.^[7] 

MY EXPERIENCE:  I get constipated with this medication. It slows down gut motility without necessarily effecting stool consistency in me so that I can get very backed up.  I have never had any untoward CNS side-effects using it on an very occasional (50mg non-XR or SR) basis for pain but when I started using it daily in the form of a once a day sustained release tablet (Durotram 100mg) for severe leg pain and I had to have breaks from it to alleviate constipation, I noticed withdrawal symptoms the same as those of coming off SSRI and SNRI anti-depressants.  This addiction may have happened earlier but I was blaming withdrawing from Lovan depsite the dose being consistent most days.  I am currently withdrawing from this medication so that I can recommence my continuing withdrawal from Lovan.  A week of horrible CNS head effects so far.  I am not sure if it is also contributing to tachycardia, breathlessness, inability to hold myself upright or even hold my ipad because it is too heavy and POTs.  I do not know what I am going to do when my pain levels go up but so far increased pain levels has not been a part of the withdrawal.  My mood could be angry because of this withdrawal. If things do not improve soon I will have to increase the Lovan aka Prozac which is what I used to get off Effexor (mentioned above) in a past prolonged withdrawal.  My doctors would be happy for me to go on a full dose of Lovan but I have been withdrawing for years and got down to 3.3mg before this interference with Tramadol.  Very annoyed about not being told.

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Connor has a baby brother

2.2kg  this morning sometime 6 weeks premature

Ange has actually been in hospital with some sort of complication so she had to stay in Brisbane and rest for a few weeks but she came home last week and here he is already.  Her Facebook page says both are doing well.  He has not been named yet.

I had a really painful attack over the last 24 hours.   I'd say it was because I was so backed up that it was so painful.  My heart is doing its racing when I stand up again so I have been laying low.  S thinks it is because he is here because he sees me sick when he comes but I have been sick enough and had gut pains recently when he hasn't been here remind him.  He has not seen me at my best.

When he was living in Toowong, he put out some feelers at the Corner Coffee Shop just up the road and he told me today that he is going down there tomorrow to do a trial at ....washing dishes.  If he is any good he is supposed to get a job out of it and he thinks it is as good a way as any to qualify for a credit card.  You sure don't qualify on Newstart and he says he "needs" one.

What year was John and Davina's wedding?

 

Don't even know where this is or when but it needs mirroring

Uncle Don oversees "get the ball in the bucket" He was on all fours not facing the camera

Is this another one of your McCall's dress patterns Mum?  Hate the hat!

Visitor for a loooooooooooong weekend and a haircut finally

I came back from the hairdresser looking like this.  She didn't cut much and parted it down the middle to show off my greys.  She also would not give me the pensioner discount saying it has to be the old age pension.  I only went there because no appointments are necessary and I was already down at the local shops posting something.  I wonder what it could have been?

I also got a call from S last night saying that he would like to come on Thursday afternoon and stay for the weekend.  He has a dental appointment in Buderim that afternoon.  It is not going to happen that way because he is already here.  He turned up at about lunch time driving a car that Roger bought the other day for a whole $500.  They got it going and it looks like it needs some body work.  There is no talk of it being given to S but he is allowed to use it while he lives up there.  S had to come down and get his Uni books which arrived here yesterday as well.  Why they were arranged to be sent here I have no idea but I am still getting other mail anyway.

I have not been doing much of anything since I went for a walk down to the end of the street a few days ago because I was worried that using the scooter would get me into bad habits - or rather Jan said that the others think that is what is going to happen to me and do not approve of me having it.  Jan didn't really say what she thought but she enjoyed having a ride on it when they came over last week.  I suspect she thinks the same way and just did not want to admit it.

I am having an uncomfortable time right now - gut cramps started after tea - so I will post some more scanned slides another time.

UPDATE:  He left on Tuesday at about lunch time after Sally Fry phoned me.  She is the psychologist for the blue card.  She will have to ring back because she wanted to speak to me in private.  On Saturday he washed dishes for 3 hours and was offered a job which he said he would take for extra long shifts just on a Thursday or Friday.  I think he wanted to live here because it meant driving to Brisbane every week but I said no and the next thing I know is that he has told the guy to forget the job.  He was relaxed when he arrived and all tensed up and cursing things by yesterday after having to make these decisions and organising heaps of Uni stuff and dental and optical appointments.  Now he wants laser surgery to hide blood vessel streaks in his eyes.  He does not want to accept them as natural indicators of health or lack of sleep and he has so many versions of eye drops.  As he was leaving he was complaining about something new but I cannot remember what it was now.  

He thinks I am ill because he has been here but I don't think it would have made much difference either way although I feel relieved that I no longer have to be watched if I want to just sit there and stare into space and I no longer have to hear his noises - same as anyone else would make if they were toileting, cooking and readjusting the noisy massage chair recliner all the time.  The TV annoys him when I watch it and it annoys me when he watches it.  Please turn it off Mum.  I found another photo turned over so he could not see it.  Nana May and Grandad Greenwood this time.  Grandad's army photo annoyed him last time so I have not bothered to put up any photos since the painters came.  Even Cohen's diabolical grin has had to be moved out of sight into my bedroom.

It would be nice if S was better company because I'd like to be able to talk to him as a distraction from my problems but he keeps his cards close to his chest and usually spaces out into his own thoughts before I even finish a sentence....more so than when he arrived last week.

35mm slides

Dr Alison Bested Speaks About M.E. Chonic Fatigue Syndrome and Fibromyalgia

Click on the link to listen to Dr Alison Bested
http://www.radio4all.net/files/disRespect@lycos.com/1763-1-disRAlisonBestedAndKati10MayCFS-MEday-RayBonneville-IBeenATrain-StringBeanAndTheStalkers-ColdHardRain-RayBonneville-WhosBeenTalkinToMe54m35s.mp3

Treatment Summary

1. First address sleep issues
2. Then Pain
3. Then be disciplined with Pacing (Activity Logs, Consulting the body, Setting Timers)
4. Acceptance and Learning to enjoy the things you can do.

Researchers Conclude SSRI Antidepressants Do More Harm than Good

You might remember that I have been having a hard time coming off Lovan and you might also remember that after being on them for two years, I decided to come off them because I started experiencing withdrawal earlier and earlier in the day which meant that I could not even get 24 hours out of a 20mg tablet before experiencing strange and horrible sensations in my head which I could only explain as dizziness and visual perceptual jumps so that when I moved my head or even just my eyeballs I would feel disoriented a split second at a time but repeatedly and frequently so that unless I sat still staring at a fixed point I would suffer.  I have had the same experience with Lexapro and Effexor which I believe were even worse than the Prozac I had before that.  I've been on anti-depressants for years up until a couple of days ago because now I think I can use the Duratram (XR version of Tramadol) to relieve much of the withdrawal sensations.  Then I will have to face the experience of coming off the Tramadol but with all the pain I have had this year (which could be worse because I am not taking a therapeutic dose of SSRI) it is not likely soon.  However, I get a little taste of it when I stop taking the pain killer for a couple of days to give a constipated bowel a better chance of returning to normal. Which is even more important now that my really painful bowel contractions are back in full force.  


According to an article I have read, researchers from the U.S and Canada have been studying the side-effect profile of SSRIs.


"The researchers point out that serotonin is a molecule of evolutionary importance that influences many aspects of health.  Its natural balance and regulatory function are disturbed, not improved, by taking SSRI drugs.  Of particular interest is the fact that SSRIs actually damage brain function, making individuals who take them more susceptible to depression as a result of stress. The researchers review the new science showing that antidepressants cause brain cell damage and death, even reverting mature brain cells to an immature state that triggers neuronal death.   ......................... I would also like to point out that one of the adverse side effects of SSRIs is bone loss."


Read More of the report

The published abstract of the study itself can be found in Frontiers in Evolutionary Psychology

Dr Ann Blake Tracy warns: "The most dangerous and most common mistake someone coming off the SSRI antidepressants makes is coming off these drugs too rapidly. Tapering off very, very, VERY SLOWLY--OVER MONTHS (and for long-term usersâa year or more), NOT JUST WEEKS! has proven the safest and most effective method of withdrawal from this type of medication. Thus the body is given the time it needs to readjust its own chemical levels. Patients must be warned to come very slowly off these drugs by shaving minuscule amounts off their pills each day, as opposed to cutting them in half or taking a pill every other day."

Other Sites of Interest


http://ajp.psychiatryonline.org/article.aspx?Volume=168&page=511&journalID=13 (stroke)


Ssristories.com


http://www.yourlawyer.com/articles/read/18813 (sue 'em)

http://www.newsinferno.com/pharmaceuticals/researcher-warns-ssri-antidepressants-side-effects-may-include-digestive-problems-worsening-depression/37697 (digestive problems)

http://survivingantidepressants.org/ (withdrawal syndrome support)

Dead batteries and M.E Myths busted

This was my last ride.  I did not even get down to the side street before the battery indicator went into the red so I turned around, came back to my driveway and it did not even have enough power to get over the lip of the curb so I had to get out - that did it enough so that I did not need to push it.  I won't be going anywhere but inside the garage on those batteries.

There is a good article about ME/CFS being circulated at the moment.  It is written by a reporter (Sonia Poulton) who decided to do a bit of research rather than trust the impression she had formed through the eyes of the medical establishment, the Government (in this case U.K.) and the media.  Here is an excerpt:

Myth No. 1: ME is a mental illness

Not so. It is a neurological one. It is not a case of 'mind over matter' despite many GP's and health professionals still thinking it is. Psychiatrists have bagged it as 'their thing' and the General Medical Council has been somewhat remiss in supporting it as a physical condition.
 

I spoke with one ME sufferer, who asked to remain anonymous for fear of upsetting the medical professionals who are currently treating her. She said a new GP at her practice had suggested she take up meditation to help her combat her decades-old condition.
 

Thankfully there are some doctors, few and far between admittedly, who really understand the physical nature of M.E. ..............


Sadly, there are still many health professionals who buy into the notion that M.E. is a psychological disorder and should be treated as a form of insanity.


Myth 2: ME is just extreme tiredness, right?

Wrong. Despite falling under the Chronic Fatigue Syndrome category - as does Fibromylgia which has its own Awareness Day next week - it is entirely wrong to assume that M.E. is merely about lack of energy.
 

This confusion arose over the past 20-odd years and is due to the condition being re-classified as a Fatigue Syndrome.  The result of this has been to trivialise the illness which has served as fodder for ill-informed public commentators who have used M.E. and Fibromylgia to talk about 'scroungers' in the benefits system who are 'too lazy' to get out of bed.
 

For those who know about the illness, this type of commentary is viewed as dangerous rhetoric that deserves to be classified as a form of hate crime.
 

Myth No. 3: M.E. is just like a bad flu

Oh, if only. M.E. is a complex, chronic, multi-system illness that affect the body in similar ways to Multiple Sclerosis. In addition, inflammation of the neurological system can lead to heart disease, extreme muscle pain and other debilitating and life-threatening conditions.
 

As one doctor put it, comparing M.E. to an illness like flu is like comparing Emphysema to a chest infection. It seriously undermines the truth extent of M.E.
 

Myth No. 4: M.E. sufferers should just 'pull themselves together'

Many sufferers have found themselves abandoned by health professionals, struck off of registers and even rejected by their own families when they have failed to respond to 'tough love'.
 

Too many people assume that M.E. can be overcome with the right mental attitude. This consequently leaves M.E. sufferers even more vulnerable to issues like depression as they are further isolated.
 

M.E. is not a case of the mind being able to heal itself with determination.

M.E. breaks the body down and that also includes the brain.
 

Myth No. 5: Only adults have M.E.

Children have M.E. and their childhoods are destroyed as a consequence.

Margaret Rumney of Allendale, Northumberland.watched as her 11-year-old daughter, Emma, was reduced to a shell of her former self when she was struck down with M.E. nine years ago."Since then it has been a continual rollercoaster of emotions and has been one fight after the other," says Margaret. "It is very hard for my daughter being ill, she is virtually housebound, often reliant on a wheelchair, and to have to cope with disbelief and ridicule on top of this makes this illness even harder to bear."
 

"Our experience of my daughter's school was an awful one. When my daughter was receiving home tuition organised officially by the Education Welfare Officer we were threatened by one professional that if my daughter didn't return to school that it would be classed as a psychological issue and social services would get involved."

Threats and intimidation of this nature at the hands of the authorities are a constant feature of those in the M.E. community, and particularly those caring for children with the illness.  Naturally, this pressure merely adds to the overall anxiety that sufferers are already experiencing. Education is key. Bullying is not.
 

Myth No. 6 - You can 'catch' M.E.
A hotly contested issue. Data suggests it's possible but the true cause is still subject to much debate among the more knowing professionals. What appears clear, however, is that ME seems to follow on from various viral infections, including meningitis. More research is needed.

Myth No. 7: Real M.E. sufferers are few and far between

There are currently 250,000 recognised cases of ME in the UK. That's 1 in 250 so that's hardly an insignificant number, is it?
 

Myth No. 8: Only severe cases of M.E. are worth acknowledging

Terrible misconception. M.E. ruins people's lives even if the patient is not entirely bedbound.  The media tend to concentrate on the worst case scenarios but this does not help the full situation as it leaves others, who are still able to move at times, with the stigmatisation of 'not being ill enough'.  Claire Taylor-Jones, a mother of one from Rhyl in North Wales, has been unable to pursue her ambition of becoming a solicitor after she was diagnosed with M.E.  In common with other sufferers, Claire has good days and bad days but she is not consistently well enough to pursue her goals and she is left in a type of limbo land. Her plans are on hold.
 

Myth No. 9: Children with M.E. have neglectful parents

There's the notion that children with M.E. are actually victims of mothers who have Munchausens by Proxy – the illness where parents act as if the child is sick to further their own need for attention.  This is a particularly dangerous belief system as it leaves the true M.E. sufferer without sufficient support and diagnosis and the carer is treated as the problem.

Myth No. 10: Physical exercise will benefit M.E. sufferers

Absolutely not true. Worse, still, enforced 'graded exercise' can escalate the condition to dangerous and irreparable levels for the patient.
 

During the research of this subject, I have watched footage of hospital physiotherapists literally bullying M.E. patients to stand and walk. It is pitiful to witness.  The physios say things like 'Come on, you can do it. You just have to put your mind to it' and, at worst, 'You're not trying hard enough.'
 

Julie-Anne Pickles, who has had M.E. for the past seven years has experienced a serious deterioration in her condition as a consequence of wrong diagnosis and ineffective medical response. She is now 90 per cent bedbound and has been diagnosed with depression, diabetes and Angina.
 

She told me:

"Cardiology phoned me with an appointment the other day and they told me to wear trainers because they want me running on a treadmill while on an ECG! I said: 'You do know I have M.E.?' They said they did but not to worry as I won't be running for more than five minutes! Running? I crawled on my hands and knees to the loo this morning!"
 

This idea among some of the medical professional that enforced exercise will help the condition of a M.E. belongs to a darker time in our history. A period when we thought that autistic children were a result of being born to cold and detached women or 'refrigerator mums' as they were heinously and immorally labelled.
 

Myth No. 11 - M.E. is not life-threatening

It is, although the true mortality rate of M.E. is mired in great confusion.

Recently, Labour MP George Howarth asked Paul Burstow, Minister of State for Care Services, to supply details of deaths to arise from M.E. Mr. Burstow replied that 'this information is not available and is not collected centrally'.  As with so many issues regarding our sick and disabled, the Coalition had this wrong, too.

According to figures obtained from the Office of National Statistics, there have been five deaths listed as the cause of M.E. in recent years.
 

For campaigners this is nothing less than a fudge of the true scale.
 

Figures are easy to massage with M.E. because it triggers so many other illnesses, such as heart disease. Given that many health professional still deny that M.E. is a physical condition, they are unable to list it as a cause of death even if it is.
 

Myth No. 12: M.E. is an excuse not to work

Despite recognition from the World Health Organisation in 1969 that M.E. is a neurological disorder, many Governments - including our present Coalition - have chosen to ignore this.  Consequently, M.E. sufferers are subject to a battery of controversial fit-to-work assessments. The anxiety and physical exertion this requires generally worsens the condition.
 

When the M.E. sufferer is unable to work, because of their illness, they are removed from disability benefit and are plunged into poverty.
 

So, for M.E. Awareness Week, let us be clear. M.E. is comparable to AIDS and cancer and all the other vicious and uncompromising diseases that savage the body and, in some extreme cases, kill it completely.  The fact that it is still so widely misunderstood is a modern day travesty that must be addressed without further delay. Or is it convenient that we still view M.E. as being 'all in the mind'?
I believe that we, as a nation, deserve to know the truth. Not only for those still battling the disease, but for those poor souls who have already been lost to it.

Read more: http://www.dailymail.co.uk/debate/article-2141230/All-mind-Why-critics-wrong-deny-existence-chronic-fatigue.html#ixzz1uRx6lHSV

Notes for ME

Rachel Makepeace (Facebook name) summarised what was going on at Bond Uni for me:

1. Bond Uni research is to aim and develop diagnostic tool of ME/CFS.
2. The final paper hasn't finished or published yet, but Ekua (one of the researchers) has published papers that point out their findings of low NK Cell activity in pw ME/CFS.
3. From the info Melinda posted here, we can tell that pathological diagnostic test of ME/CFS is possible.
4. Bond Uni had recently announced they are planning to open National Testing Centre (for ME/CFS) at their campus within 5 years.
5. There is a plan for the next research that is to compare the discovered biomark of ME/CFS against MS and RA to ensure the it will single out ME/CFS from other similar illnesses.
6. There will be some change in the research and the team is currently extremely busy to get all paper work sorted out.

Aside from this, there is a research collaboration between Bond Uni and Simmaron Research in the US (founded by Dr Dan Peterson.) 

Some of the blood collected by Bond Uni research were sent to Simmaron Research to figure out why our NK Cell Activity is low. And they are currently doing fund raising to make this important follow up research possible.

As you already know that Sonya (the lead researcher) has secured the historic grant (nearly A$1 million) recently, so I think it is safe to say biomedical research into ME/CFS will continue in Qld. 

Seratonin receptors are in the brain and the gut 

This section is just to remind me about the best two days I have had this year.  I guess I was on a "high" after not taking any Tramadol for a couple of days then starting again.

I have terrible CNS effects from withdrawing from Lovan (or any other SSRI or SNRI) and now I fear it is happening with Tramadol too.Without seratonin boosting in one form or another, I do seem to  have more pain but I have been withdrawing from anti-d's for 3 years - now on very small dose but I still get withdrawals if I forget to take it. Doctors are not taking me seriously and now Tramadol is in the mix as well. When I reintroduced it after two days off it, I have had the best days (not nights) (since Sunday) and very happy to be alive, and feel like having a mobility scooter is a total over reaction because I don't need it, but for the last two nights I have had acute bowel spasms so I am starting to suspect my brain wants more seratonin and my bowel can't handle it. I have no idea who to go and see about it - my GP's are clueless - my rheumy won't see me until after I have a biopsy for Whipple's disease. I am already going to an IBD clinic but truth be told, I don't think they know too much about seratonin in relation to gut either. Maybe patches would be better for me for pain instead of Tramadol which gives me a sense of well-being but is also acting on Seratonin levels.  It becomes an important consideration now that I am aware that there are more seratonin receptors in the gut than in the brain!

One observation is not enough to make conclusions so I will see what happens when I stop taking Tramadol next time.  By the second day I was just sitting there crying.  I also had the head jumps that come with moving my eyeballs, so typical of the problem I have when lowering the dose of Lovan. That was Saturday.

I know that Seratonin Syndrome is dangerous but at no stage in recommencing it could I say that I have had any of the symptoms: "Mild symptoms may only consist of increased heart rate, shivering, sweating, dilated pupils, myoclonus (intermittent tremor or twitching), as well as overresponsive reflexes.^[1] Moderate intoxication includes additional abnormalities such as hyperactive bowel sounds, high blood pressure and hyperthermia; a temperature as high as 40 °C (104 °F) is common in moderate intoxication. The overactive reflexes and clonus in moderate cases may be greater in the lower limbs than in the upper limbs. Mental status changes include hypervigilance and agitation.^[1] Severe symptoms include severe increases in heart rate and blood pressure that may lead to shock. Temperature may rise to above 41.1 °C (106.0 °F) in life-threatening cases. Other abnormalities include metabolic acidosis, rhabdomyolysis, seizures, renal failure, and disseminated intravascular coagulation; these effects usually arise as a consequence of hyperthermia.^{[1][3]"
 
Reference: Wikipedia}

 

Moving to BrisVegas on Sunday

I got a phonecall from Roger.  He hasn't heard from B and wanted to know if I had.  He was in Noosa taking S to the optometrist.  Sigh.  He had no idea why he was going but he just runs him around he said.  R said that S was happy to work on some car job as long as he had all the safety gear, glasses etc and as long as he is getting paid for it.  R thinks he will make a good accountant - what a joke, they are both delusional (laughing out loud).

The main news is that S is moving to Brisbane on Sunday and they will call in here early to pick up the rest of his gear on the way.

ME/CFS International Awareness week and Scooter update

If you have nothing to do on Saturday, you may like to go to Preston because "Linley will be encouraging sufferers, their carers and the wider community to get involved during ME/CFS International Awareness week.  She is opening the one-day Awareness Week Education Seminar hosted by ME/CFS Australia (Victoria) which aims to broaden knowledge of diagnostic and treatment protocols and best practice, being held at Darebin Arts Centre at Preston on Saturday 5th May. Linley will welcome an audience of GPs and other medical practitioners and invite them to support the campaign.  Special guest speakers at the Education Seminar include Associate Professor Sonya Marshall Gradisnik from Bond University who is also a keynote speaker at the upcoming ‘Invest in M.E.’ Conference in London."

For further information, contact Alison Copley, CEO, ME/CFS Australia (Victoria). 
T:  03 9791 3100   E:  Alison@mecfs-vic.org.au      

About Linley: Linley had her stellar swimming career cruelly cut short after winning the gold medal in the 100 m breastroke at the 1991 Fina World Championships and competing at the 1992 Olympic Games in Spain.

Reference:  Media Release, ME/CFS Victoria (Australia), Dated May 2nd 2012

Scooter Update:  I rode down to Karla's place earlier today worrying about the drain on the battery from even a slight incline on the road but also assuming that I could charge it up there if I needed to.  I did charge it while I was having a cuppa but it was still going into the red on the way home.  I think going to the local shops and back the other day was the beginning of the end for these batteries.  I phoned the local scooter shop which serviced it and he said that they just die quite quickly and it should get me 20km with new batteries.  $198 times two batteries and $33 labour.  I'm a bit disappointed I didn't get a longer run on them but I can see I am going to have to do this for peace of mind.  Unfortunately, I have committed to spend some of your birthday gift on getting a light fitted in my wardrobe (because I can never find anything) so I will have to save up even more.  I think I know what I will be spending this coming energy grant (or whatever it is called) on.  Not sure how much we are getting in June.  Hopefully enough for at least one battery.

I don't know if you remember me speaking about Marina who lived downstairs where Auntie Dawn used to live in HB before she moved, but her name was fast-tracked on the Dept of Housing and Communities list thanks to her doctor. Anyway she asked me over for a coffee yesterday at her Seniors Unit she has just moved into here in Clown Town.  I went despite the fact that I am never feeling the best lately but I am better than I was thanks to my birthday quick course of steroid for three days which didn't stop the crash after my birthday at such a low dose but seems to have helped some.  I probably did not take enough so I am only just hanging in there being able to get out a bit if I don't stay on my feet.  I also did some shopping yesterday which meant I had to be on my feet.  I feel pretty worn out today though.  There is so much I need to do but I am going to have to rest a lot especially now that I am not taking any steroids.  I don't want to get any fatter by taking more.  However, maybe my eyes (light sensitivity) were better from taking the steroids not the cod liver oil.  Just thinking.  They are worse again today.

Back on the Movicol again too.  I didn't get on top of it the other day.

I've got ceiling fans and chipped paint

If two people are talking at the same time, how many voices do I hear?  Or rather, comprehend?  None.  Is that normal?

When someone phones with a foreign accent, has there ever been a time when not one word out of the entire message on a message bank was understood?  It has happened for me even after replay.  They are actually speaking English.  Is that normal for a 57 year old?  I don't think it would make any difference with hearing aids in.

I'm still wearing sunglasses around lights inside although I can tolerate going without for a while now.  Cod liver oil could be helping but I have developed a real distaste for it - something like Movicol which I now try and avoid but I had better do something about an alternative like NOW.  I did skip my chia seeds for a day or so and I have been popping a few extra pills lately.

Not feeling so great right now - maybe it is post scooter malaise or just that I have been up too long.  Yesterday I thought the pain was improved, today I started off improved but not so good now.  I got to the shops on the scooter by using the path on the other side of the main road.  I was not feeling well but I did not expect it to make me any worse.  I did walk inside the shop which was nothing bigger than the milk bar at Ronald Street.  Odi's fruit shop.  The Odi who used to work with B for the Village Fruit Shop and then Pelican Waters fruit shop although Odi had left them by the second shop opening.  From fruit selling to mechanics to welding.  Anything else?  Odi wasn't there anyway.

I can't say I got much joy out of it today because of the way I feel but I must have got some.  I smiled at the shop keepers.  I was concerned about the battery because by the time I got to the shops it was already half-way down the green section which meant I could not risk going down to the water or to Karla's which I may well have done.  I needed the distraction from the way I felt.  So it was not to be and I came back here to be on the safe side.  I am going to have to phone to ask how low you can let it go and whether it "recovers" if you stop riding it for a while.  It seemed to when I went in the shop.  Not that I was in there for long.  I also grabbed a cold chook because I doubt if I will be able to go shopping today - well I just won't be.  It will last me several meals and I will make some of it into something.  I am getting pretty good at throwing something edible together in the shortest amount of time possible but it is never "complete" lately.  I'll survive on it anyway.  I probably have done myself a favor not eating much wheat but it rules out sandwiches which I think are a nutritious meal apart from the bread with it's lovely soft texture I miss so much.  There is nothing that can replace the texture and taste of a highly processed, nutrient devoid slice of fibre.  I will eat it when I am out.  And I still like to buy the occasional cake.  But I think the effects accumulate because I have so much less heartburn/acid reflux these days but I can get away with maybe once a week and maybe crumbing on a piece of meat.  Toasting makes it more tolerable but I really like Spelt bread toasted - not so much the sourdough version.

But how often can I get to a shop that sells Spelt Bread?  Probably more often than I think now I come to think of it.  It means driving a distance that's all.  Petrol money - yes.  But maybe I should make a monthly habit of it just to take the car for a run haha and me for a drive up the highway.  $26 dollars or more for 4 loaves of bread is probably worth driving for and it is quite close to the Botanical Gardens which might be nice to sit in the car there for a while but no way can I walk in there feeling like this.  To the toilet and back - yes.  Today I am going to say no to that idea.

I think I am writing today mainly to distract myself from doing what I should be doing which is going to have a proper rest.  But I suppose I had better say something about the new ceiling fans that were installed yesterday.  I wasn't feeling too well then either so I mostly sat in the car while the workmen had tools in every room all at the same time.  I did speak up when the electrician proposed running conduit up the lounge room wall.  When I protested he said he could do it on the garage wall side and I was relieved.  It was something to do with the earthing in old houses being sent back to one central light and then back or something that is not done now days so that the fittings are not designed for it.  He figured it out and his offsider unpacked and assembled fans out of a whole lot of useless packaging.  I see one looks crooked.  You can imagine what the ceiling looks like in the bedrooms where a wide based light fitting was replaced by a small-based fan, and the chips of paint that came off with that.  I did not expect the paint around the wall plates where the light switches were replaced with fan switches, to be chipped off but the layers of new paint stick together till they reach a nice smooth un-sanded old paintwork.  So with the taxpayers money, the painters will be sent back again because they cannot get things done in the right order.  Maybe next year?

So now that I have fans, there are no lights of the type that I can add my shades to.  That crystal (plastic) chandelier doo dad with the extended drop I bought from Bunnings is now obsolete.  The other shade cost me $15 and Zena, you can have your Baton Fix plain light back again if you want it.  It is a bit like me wasting money on getting fly screens only for them to come along a couple of years later and replacing them with security screens.  That was my first expense here and do you realize that it was TEN years ago this month?  I was working maybe 6 hours a week tutoring then plus prep and marking for 13 week semesters.  I think I had given up my sights on anything else in academia though. I think I had quit finishing my Masters Degree.  Just remembering.