How did life develop chronic Blog & Forum in its first year and what next? These are questions that preoccupy me during these weeks. With the newsletter of the year I will try me and to give you some answers. Before I comment on particular points of emphasis, a first brief and very subjective assessment of the development:
It was and is a risk, in a non-underserved diverse landscape Forum even offer a new platform. I mean, this experiment has been worth it. Whether particular, the Forum can conquer his own small place, it will show next year. Only one thing is: Simple is also not continue to be. It is difficult not only for me, see if my concept of which I am confident the desire and interest of a sufficient number of chronically ill and their families will. At the present time can not assess this at all realistic.
The annoying conflicts - finally finished
The reason for this uncertainty is mainly in about three months the ongoing controversy with a handful (maybe there were and are two) people in a neighboring forum search. I have finished my part, but this conflict unilaterally. An open secret is that it certainly are forces who want to double as activities in both forums to prevent their occurrence. I hope and believe that those interested will not ultimately stop it, even in a forum with a completely different approach to look around and there by bring.
In any event, no one will live chronically excluded or put any pressure just because he or she is also active elsewhere. Promised.
And something that many chronically ill and has relatives still:
Yes, the clashes were some assets of another forum from me out in a manner that corresponds to my nature is not (who knows me personally, probably knows this). I would like to take this opportunity to again express with good friends and friends who have made it abundantly clear to me that it can not go on. I have drawn the conclusions and therefore unilaterally terminated the discussions.
Here are some key points once
chronic life of the forum, which prove their worth in my opinion:
Factual issues to the fore
We are a theme-oriented forum. Everything that is related to chronic diseases in a verifiable factual context, can and should take place here - here are different views and subjective opinions, treatment and sensitivities important part of forum life. Addressed are always the sufferers themselves, as well as their immediate environment that those concerned of the illness experience and certainly from the disease (sometimes us sick) (with) is suffering - "sympathy for" not to be confused with, need the most chronically ill of us only a very limited extent.
Conversely, means but also that "hustle and bustle" of well-meaning greeting have endless arias, time-and space-consuming and adulation around cavalry on merit, which reveal themselves on closer inspection, not really, no place in chronic live. Any games or "Paint by Numbers" (which should not be taken literally) who have actually driven in a so-called Parkinson represent the real issues are nearly 100 percent, does not occur. That does not mean we go to laugh ind s basement or have any fun in our existence.
focus
focus both the Forum and the chronic life-blog is the comprehensive information about living with chronischehn diseases (emphasis currently: Parkinson's disease). We also try to offer topics that hold back so far in almost all the forums more and / or treated evasive. As typical examples of what I call depressive comorbidity and an open critical discussion of the after-as-before-taboo subject (especially with the social stigma depressed patients).
The second topic I want to mention at this point the side effects and risks of drugs to patients who are chronically dependent. Of these adverse events are often the way, also members or wholly concerned with innocent bystanders. The issue of impulse control disorders in einiegen Parkinson's medications and after surgery are meanwhile kindly addressed more open - but the open and constructive approach to the topic is still woefully inadequate - and leads, for example, time and again, that victims of these victims of modern are medicine, which then become perpetrators, still not really taken seriously. I think it is one of the important tasks of forums and we understand that in chronic live, to meet even these very difficult issues. We can solve the problems - but we can in our small area to That contribute to change something for the better.
would in this context I draw quite proud of a approach that is of our previous presenters Chris and Bass Bernd, and I worked out: In chronic live there show a very simple, unambiguous and very consistent rules, the Alliance Partner of our forum who Grtenzen in personal dealings . This includes the way from no way that we will always try Menschemn a wake impulse control disorders of the purchase and gambling addiction to the hypersexuality as interlocutors make Verfügugn: one in such cases usually inevitable therapy, we can not, of course, but also only partially replaced.
Creative is also chronically live
not in the foreground, but is important to us but all creative people - it should be not be professional (but it is often enough yet), it does not have the disease even central theme - the quiet, deep joy of a sunrise is part of our chronically life. We want to try to develop the creative side of our forum as a private, not overlooked to focus - positive jealous I squint as well on two or three creative writing, especially in the neighborhood, which is beneficial from the otherwise prevailing teasing off "humor." Just come with us sometimes over - you know who I mean: Giants and Bears would be a good match for us.
A good team
Ambivalent is my interim results in terms of (number of) people in and around chronic life:
decidedly positive - to put an understatement! - Our common experience of the assets is in the forum. Because it is not (yet) so few, can and may I call them by name.
Elrawi and Pepita, the close with great commitment and ability to bring us the possibilities of alternative and natural therapies we can offer. What I like about the two (especially of course in Elrawi as the responsible host for this not so undisputed area: You do missionary work do not they offer I myself am not well known, such a staunch "Alternative", but swallow critical, but consistent mean. pills of the medicine and the "medicine cabinet" - that has elrawi called the responsibility of their forum part for me is now a grown not gone to thinking part of the Forum (as much enthusiasm just has to be allowed times)
be painfully missed now. two women and a man who live chronically in the short time very much have characterized them. Manu, your critical faculties and your clear words fail us, and that goes for Christine and Bernard Bass. All three had very valid and understandable, and very personal reasons to stop their activities here in chronically live (temporarily? That would be nice).
active - in the background
There are also people who are actually suffering, or belonging, currently remain more in the background, that does not mean that they do not participate in any way in the Forum lives. Also associated PMs or phone calls, do not take place in the public, are part of the forum - sometimes not the least important. And even among them are some who (have to do by the way, NOTHING with the previous arguments with another forum) for very personal reasons, are temporarily not publicly active, of course, the absolutely respected.
And everyone - whether visible in the forum or in the background we have had an experience: It IS possible to take a critical and contentious set apart one another, without injury. I believe this enables us especially because we listen to all of us each other very carefully - and make no bones about it. Probably also important: we do not take ill.
Ambivalent feelings I have with this topic when I look at the figures look at those on which I have just written - and compare it with the total number of registered members is outwardly respectable, almost 40, are of course quite a few test accounts that need to be simple, for technical reasons.
I realize that there are a number of (entirely in the positive sense) curious registered members who simply want a look in the members area, what we are doing uttered them. Incidentally, now you have noticed that this view through the keyhole is not too exciting - we cook namely only with water (only sometimes a little hot?). My invitation: Do it with you - your thoughts, your feelings are important to us.
members - Please bring another
appeal I would particularly like at this point to not a few already registered members who were once very active in chronic live and (understandably totally annoyed by have withdrawn the unfortunate clashes). I would point out that chronic life emerged, not least to better the problems and experiences, and especially the members contribute fully and above all truly equal footing.
I am delighted that currently can be seen in another forum that members no longer be identified slain when they say something that our own patients does not fit into that stuff. I should also point out that we have developed together with you to this concept, that provides the families, for example, protected areas, their long time and have still called for in vain elsewhere.
All in all: If you are interested in enriching the landscape to continue to represent a platform, not better, just different than other forums - then get in touch with your wishes, with your critique with alternatives, with your problems and your ideas of how to do this or that in our chronic life (and our chronically ill life) better and should.
If you no longer have any passwords to work, no problem: a small mail to me and you'll get a temporary new one, which you can then change the profile again.
In this sense I wish you all a happy 2011
Norbert Jos Maas
the chronic life-Newsletter to get regular e-mail? - Click Here
0 comments:
Post a Comment