April 8, 2013

me+ME: On Nederlog and internet-problems
1. Difficulties writing Nederlogs
Difficulties with internet
About ME/CFS


Yesterday I wrote a Nederlog about Obama and about Carey and was almost finished with it when I noticed that it had not been saved although I had repeatedly saved it. Then it totally disappeared, and that is why there is no Nederlog for April 7, 2013.

Today, as I am writing this text, the internet stopped, as did my phone, through which my internet connection also runs.

I must suppose, for the moment, that the most likely explanation is a breakage somewhere in the phone-lines: It does happen sometimes a dragline mauls a cable.

Hence my title, as I will write about some of the difficulties of writing Nederlogs and maintaining my site. I do not know when I can upload it .... [3]

.... As it happens, after ca. 2 hours everything works again, without me doing anything.

1. Difficulties writing Nederlogs 

I have been fairly regular in writing Nederlogs since 2004 (when it was called Nedernieuws, until 2006), but there have been stretches - days, weeks, one time several months - there wasn't any.

Three reasons I can do so are that I always found it very easy to write (and know how to type since ca. 1965); that I always have ideas and interests I may write about; and that I am in the dole (which is unfair since I am ill, but then much in Amsterdam and Holland is very unfair, except for the political elite and the rich,  but it is also fair to say that without dole, or some other way to get money for the necessities of life, I would have been dead long ago, for I really am ill, and people like me will not get work, and also often will not be able to do work they get: I can guarantee only one thing, namely that with such "health" as I have I can guarantee nothing).

I write these Nederlogs on what is for me the fittest part of the day, that may vary a lot. I usually do it in one go, and then go to bed again, and - by the way, as I am speaking of what enables me to write these Nederlogs - it helps a lot I can do it sitting.

On what are for me good days it's not very difficult to write a Nederlog, for the reasons I gave, and provided I can write it during the for me best part of the day, and also provided I need not do any carrying or much walking or standing.

On what are for me bad days, it may be quite difficult to write a Nederlog, and there have been times I simply could not do it, in spite of doing nothing else besides.

The three major problems I have, at least since almost a year now, are these:

(1) I have ME/CFS and normally feel exhausted, though this may vary, indeed quite a lot, though I've not felt really healthy at any point since 1.1.1979 when I fell ill with a serious bout of
Epstein-Barr (mononucleosis), that seems to have never left me [1], or at least the quite typical feeling of exhaustion, commented upon in note [1], never left me. (This is very probably also related to the fact that one does not have "refreshing sleep" with this disease: I generally wake up with muscle aches, feeling more or less exhausted, and indeed tend to need to recover from that, the first few hours, after which the pain and exhaustion generally feel less.)

This makes doing anything whatsoever more problematic than it would have been otherwise, without M.E., but then it also is the reason there is a Nederlog: Had I been healthy, there would have been no Nederlog, and my life would have been totally different, and very probably far more pleasant and less painful. [2]

(2) Since May 2012 I have serious problems with my eyes, which are worse than they were, in terms of vision (I am near sighted since around 10, and have been very near sighted for decades), and often painful. This has been diagnosed as keratoconjunctivitis sicca aka "dry eyes" (a euphemism for "eyes that feel like abrasions"), and part of Sjoegren's syndrome, that afflicts people with ME/CFS more often than people without.

This makes using the computer, writing, reading, sometimes even just seeing, a lot more problematic than it used to be. It is very unpleasant, and the only good thing I can say about it is that it has been considerably worse than it is now.

(3) I use
Ubuntu as an OS, which I much prefer over MS Windows, and which indeed helped me a lot to keep using a computer, but which has one major problem for people with large sites in html: There is no good WYSIWYG html-editor for Linux, and I do need such a one to help maintaining my site.

I generally use KompoZer, and sometimes SeaMonkey's Composer, which are the "best" that is available, but both are bugged, and the former is seriously bugged, and to use them - especially KompoZer - one has to learn to work around the bugs.

The reason to use KompoZer is that while SeaMonkey is less bugged, it also is considerably less powerful, but both editors have caused major problems for me; have made me loose quite a lot of work I did; and have forced me into much trouble to undo the damages they did to my site.

One example of the latter is the size of the fonts: If you find a file on my site that has different font sizes in the same text, without obvious reason, it has been put there by SeaMonkey or by KompoZer, and in such a way that I did not see it in the editor.

I could complain a lot more here, but will not because something is better than nothing.

2. Difficulties with internet

Since I changed to fast internet in 2009 the problems are a lot less than they were from 2002-2009. From 1996-2002 I used, which (around) then was sold to KPN, which in turn seems to be sold to Carlos Slim, though I do not know how this happened.

Again I will not mention quite a few things that may help or hinder some.

And there may be another Nederlog today, but I do not know.


[1] There is a theory, from the 1980ies, that ME/CFS is "Chronic Epstein-Barr Virus disease". (See "Chronic Fatigue Syndrome" by Jesse A. Stoff M.D. and Charles R. Pellegrino Ph.D., Random House, New York, 1988, ISBN 0-394-56956-3, that claims it is based on that theory  - and I am not suggesting you read it, for it is not very good, but only getting my references straight.)

This theory has since been left, or so it seems, though if you check out Epstein-Barr virus on Wikipedia and elsewhere you'll find that there is still much to learn about this virus. There are fashions in all human things, and in medicine too, and I do not see why Chronic Epstein-Barr in my case, and that of my ex, who fell ill 10 days after me, and also never got better again, may not be the explanation, though I agree I have no other positive reasons - except that my and her health-problems started with it and never went away (which for both of us equals 70 years of being ill).

In any case, my reason for mentioning this is that my ex and I soon agreed that our disease comes with a peculiar kind of feeling exhausted that we did not know before we fell ill, and always had in varying degrees since, and that is definitely not the same as fatigue, tiredness or feeling sleepy, that all feel different.

As far as English is concerned "chronic exhaustion" is much more like it feels than "chronic fatigue" - rather as if one has a brief while ago finished running the marathon, but not as if one just had a good meal at the end of a busy day, which well may cause what is adequately described as fatigue.

And a final point in this context, also related to the sadistic horror - for patients with M.E. - that is called "Gradual Exercise Therapy": Having been ill so long without any help, I have been many times forced to push through feeling exhausted to try to do something, and the general result was more exhaustion, more pain, more misery and a longer period - weeks, months, perhaps even years - of getting over the harm done by the effort.

[2] It is hackneyed but quite true: As long as you have not fallen seriously ill for a long time or got invalidated somehow, you really do not have any adequate understanding of how lucky you are being healthy, and you really do not have any adequate understanding of what it is to be seriously ill or invalidated. I am speaking here also for my self: I did not know what it is like to be ill, until age 28 I really fell ill.

[3] The internet stayed off for about 2 hours and then switched on again.

About ME/CFS (that I prefer to call M.E.: The "/CFS" is added to facilitate
search machines) which is a disease I have since 1.1.1979:
1. Anthony Komaroff

Ten discoveries about the biology of CFS(pdf)

3. Hillary Johnson

The Why  (currently not available)

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2003)
5. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2011)
6. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

7. William Clifford The Ethics of Belief
8. Malcolm Hooper Magical Medicine (pdf)
Maarten Maartensz
Resources about ME/CFS
(more resources, by many)

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