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What amount of "forum activity" is proper?

Discussion in 'Lifestyle Management' started by Nielk, Jul 15, 2012.

  1. Nielk

    Nielk

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    I have been struggling with this question now for the past month.

    I have been pretty active on this forum for over two years. I feel that this is helping me. I get really good information here as well as empathy. I feel understood and learn from others' experiences.

    Because of personal experiences, I was not able to get on the forum for over a month. At first, I really missed it a lot but then, I got used to it.

    Some well meaning people in my life have been telling me that they think I am getting too absorbed in this ME/CFS world. I spend too much time online, searching, posting, communicating. I am wondering if they have a point. In addition, if they have a point, what is the "proper" amount of time one should be spending with this.

    Some people feel that if you don't actively think about your situation all the time, it is healthier. They feel I should be spending time on other things - not related to my illness. They think that I am closing myself in - to my inner world of illness. This in turn, doesn't allow me to open up to other possibilities.

    I can understand their point of view. At the other hand, I feel like I am fulfilling a personal need to understand and be understood.

    I guess just like with everything, there must be a happy medium.

    What do you think?
     
    L'engle likes this.
  2. Ocean

    Ocean Senior Member

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    I think only you can find that for yourself. I find when I'm feeling either somewhat better or really bad to the point where being on here is hard, I'm not on here much. When I'm physically and cognitively able to do other things, I usually do and only come here with specific questions I have or for a quick check in. When I'm too sick to do anything, I spend more time here because there's not much else I'm able to do then. But that's just me.

    If it fills a need for you that you can't get elsewhere then I think it's an important resource for you. I do not subscribe to the theory that thinking about our illness makes us worse. I subscribe to the idea that we think about our illness because we are sick and it affects just about every single aspect of our lives if not every single aspect. Also we get info here that helps with our illness that we wouldn't otherwise get and that is invaluable. The social an emotional support and understanding is important too.
     
  3. L'engle

    L'engle moderate ME

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    I think if it is helping you to feel more connected to the world, that is a good thing. If you were healthy, you would likely be absorbed in your work or other activities. People in your life might be telling you you are too absorbed by your job or other things (whether rightly or not). So I think with this, if it feels comfortable for you to focus a great deal on researching and forum activity, that is probably a good way of adapting. Some of us find great meaning in single minded focus on a task, so if we are ill, we make learning about our illness and taking part in the illness community into our focus. It's away of still being a part of something in the world, even if it is not the world we would have been part of in our healthy lives.
     
  4. Kina

    Kina Moderation Team Lead

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    I think that the 'proper' amount of time a person spends doing something should be defined by the individual based on how the individual feels. :) Why stop doing something that you find helpful or personally fulfilling based on the perceptions of others who maybe don't understand you own unique needs and wants. :)
     
  5. Esther12

    Esther12 Senior Member

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    It's a tricky one, and I'm not sure about it either.

    It depends what you mean by 'healthier'.

    With a lot of CFS topics, I expect that ignorance is bliss. The more CFS research I read, the worst I feel about life - there's so much quackery that's directly affecting how I am viewed and treated!

    Also, a lot of people here are more seriously ill than me, and ignorance can be bliss with regards to the hardship of others too.

    On the flip side: blissful ignorance is not what many people want from life. As human beings, I think that we do feel driven to try to engage honestly with reality and the pursuit of truth. When people with power and authority over us will be making decisions based upon poorly done research, or manipulated result, I like to have an idea of what is going on.

    There's even a possibility of doing some good - finding out problems which others had not noticed, pointing out problems in letters to journals or electronic comments, even just trying to meaningfully contribute towards the discussion and debate here can be helpful.

    Also, there are fun and silly threads hear which just allow some play time with people who have some understanding of what it's like living with something like CFS.

    It would be nice if we could trust the medical community to just get on with things themselves, and treat CFS patients fairly - but sadly that is not the case. Perhaps that means that individual patients should make some level of sacrifice themselves to try to improve things - it is difficult though, when so many of us are already struggling.

    I was just reading an old benefits form from before I joined the forum, when I talked about reading novels and drawing... I don't spend much time on them now! Instead I'm choosing to spend as much time as I can going through CFS papers . This change has brought some real improvements to my life, simply because being better informed is useful... but this has come at a cost.

    I don't think that I'd be able to choose to turn my back now anyway. One cannot return to ignorance.
     
  6. Wayne

    Wayne Senior Member

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    I think like anything, balance is the key. Sometimes that balance tilts us toward "investing" more time on this board, and sometimes it tilts us towards spending less. And sometimes it's probably good to take a complete "vacation" for a while. In a sense, it's no different with people who are physically healthy. I've even heard of some people going into therapy to try to break from their habits of being connected way too much.

    I think the internet in general, and this forum in particular are extremely helpful aids for myself, and probably for most of us, and I would hate to be without them. But there are times when I realize I'm beginning to spend too much time online. The primary "tip" that usually alerts me is when my focus and concentration begin to get worse than they already are. I think a lot of this has to do with the flashing lights that are so prevalent on so many websites these days. Thank goodness we don't have to deal with that on PR.
     
  7. xrunner

    xrunner Senior Member

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    I'm not sure what the proper amount of time should be. It probably depends on individual reasons and circumstances.
    I have spent an incredible amount of time looking at this site. Mainly in trying to get an idea of what treatments seem to work best. That time has been a valuable investment as some of the treatment decisions I subsequently took have taken me to significantly better health. Without this site, I'd probably still be rather ill.

    Healthier not to think about it? I'm not sure either. I think it depends.
    Without thinking about it, then how can one hope to get better. But again I'm assuming that everybody is proactively looking for that. If that weren't the case then I'd probably agree with the the view that doing something else would be healthier.
     
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  8. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I think this forum has helped me a lot also, treatment wise and the empathy and sense of community. I have regained a lot of my health in the last year or so, been on the forum for about 3 years.

    GG
     
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  9. ukxmrv

    ukxmrv Senior Member

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    Nielk, it sounds like they want to control your behaviour. Do any of the ideas you come across here threaten anyone in your life or does it take away something that that want from you?

    My own options are very limited as I can barely leave the house at the moment. I find the internet groups a huge source of companionship that I wouldn't get otherwise. I'm too sick to go and see people and too sick to talk on the phone or have visitiors.

    It does sound as if maybe people in your life can't accept that you are disabled and getting so much from mixing with like-minded people. I presume that they are not in the same situation but have made this value judgment on how you should be spending your life.

    My experience has been that people who don't understand how disabled I am and who don't want to listen to me are the ones who would like me to be doing other things. That's because they would rather listen to my tales of "doing" the other things. It makes them uncomfortable that I campaign and do things around ME and disability. It's a world that they don't want to enter.

    It may pay to sit down with them and see if they can explore their feelings. Maybe one of them is jealous and would like more of your time and attention. It may be very hard for other people to face up to disability or to face up to their own needs of your time and attention.

    Just a few ideas. I'm probably all wrong.
     
  10. SickOfSickness

    SickOfSickness Senior Member

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    There was a year or two that I was spending a lot of time reading about ME/CFS and other health problems. Someone with ME/CFS and other people told me I was spending too much time. I didn't think so. Now looking back, I can see I was spending too much time, but I think that is what happens with illnesses. We will go through phases of really wanting to learn so we can get better.
     
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  11. SickOfSickness

    SickOfSickness Senior Member

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    I struggle with balancing everything in my life. There is not enough energy for everything.

    Ocean had a good way of balancing:

    Social interaction is very important. Many of us can only get real support here, from others who understand.
     
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  12. Ocean

    Ocean Senior Member

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    I agree it's important to get that understanding where we can, since so many others have such a hard time understanding our realities. Even the comments made to Nielk about not focusing on the illness sort of show that others don't really understand how the illness impacts us, that often there is no choice but to focus on it to some degree since it demands our vigilance or else there is serious payback in the form of PEM, crashes, etc.
     
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  13. SickOfSickness

    SickOfSickness Senior Member

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    Yes. But not always. When I was researching all the time, one person who said to stop was someone who understood ME/CFS. Looking back, I understand. But if I were to tell the same thing to someone newly diagnosed, they would not understand what I meant.
     
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  14. Ocean

    Ocean Senior Member

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    I think the research can help. When you first become very sick it's helpful to have info and similar experiences to help put what's happening to you in context and make sense of some of it, especially since the experience can be so alien from the lives of those around you and your own previous life. But it's an individual thing. Maybe for some it's done to an unhealthy degree, but I think only the person would be able to make that call for themselves. What looks unhealthy to someone else from the outside may not be so at all in reality.
     
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  15. Nielk

    Nielk

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    This is a great discussion going on here. Such an intelligent, sensitive group of people.

    Thank you for all your inputs!!

    You have touched on so many great points. No wonder I keep coming back for more. Where else would I get such great advice. When it boils down to it, it is only people who have walked in my shoes (okay...maybe not walked,,,maybe lied in bed)
    can truly understand.

    I also believe that there is a measure that is probably appropriate for every level of disability.

    I think that the people who have been telling me this mean well but, I do agree that they have a measure of denial of
    how grave this illness really is.

    To be honest, this past year..until two months ago, I have been mainly bedbound with the computer in my bed with me....
    constantly. These people associate me being like an invalid and the constant use of the computer but, I believe that without the support I received on this forum, I would have gone crazy! It's not the forum that made me so sick. People just saw me completely isolating myself from the world and just concentrating on my illness. I was in constant pain though and could not function.

    I do also understand though that we are creatures of habit and that once we get used to doing things a certain way, it is hard to change.

    Now, that I am feeling better, I made a rule to keep my computer in another room where I have to sit up to use it.
    I also try to limit the time spent on it.
     
  16. hurtingallthetimet

    hurtingallthetimet Senior Member

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    i think its whatever you can do and want or need to do...sometimes im too ill to respond but will just come and read a little just too feel the friendly connection of someone who understands what im going through..

    i never feel good anymore and luckly one can go on here and lay in bed with comptuer or back in chair take pain medications etc and still have some interaction...for some that are ill its the only conection to people who understands and care that we have....

    forgot what else i was going to say ....but lots of great info and advcice...and its great to vent that helps...i feel bad though cause i was one another board forever thougt i could be on two boards at once but it was too overwhelming so ive not been on that board awhile..but it had slowed down some it seemed also....

    only do what you can handle...
     
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  17. Sparrow

    Sparrow Senior Member

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    I know I spent a TON of time researching when I was first diagnosed with this. I don't regret it at all, even knowing that it was a stretch for my resources. ...Although I rarely research anymore now that I have a solid understanding of most of the areas I'm interested in, and have a game plan for myself.

    Knowledge gives you the ability to have some control and to be proactive and take concrete steps to improve your life.

    One of the things that can trigger depression easily is a sense of helplessness or loss of control over one's life. And many of us have lost a ton of the control we used to have. I think that taking some back is very much a positive thing. I know it has been great for my mental health to feel like I understand this illness and know what I'm doing.

    I do understand the concerns about everything revolving around the illness. But like others have said, I think it's a balance. If health concerns come up and I don't address them, I get stressed and slow my recovery. If I go too long without putting myself in situations where I can at least briefly forget that I have a health condition, I'm less happy. But both pieces are important, and I know that I would not be as well off with either one alone.

    That said, I tend not to discuss my research or my supplements, etc. with other people except my husband and close family. I don't trust most people not to make assumptions or judgments, and I just don't want to have to deal with those, however well intentioned they may be. Most people can't understand how truly clueless much of the medical community is when it comes to this illness, and I don't trust that I will be able to explain that fully to them without coming off sounding like a crazy person. ...So I keep that side of things mostly to myself, or make vague comments but don't go into any detail about my own investment in my care. It sucks not having their support and sympathy, but I just don't have the energy to worry about what they will think about my behaviour.

    For me, the current difficulty is in balancing my desire to connect and be useful with the strain of reading and writing things online. I know that I'm currently doing a little more than my body can handle gracefully. ...But nothing good can come of spending days feeling super lonely either.
     
  18. Dreambirdie

    Dreambirdie work in progress

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    Hi Nielk--I have had that question come up for me too. And I think the way I know that I am on the computer too long is that I begin to feel like I am not in my body anymore... like I have been possessed by "the big giant head," if you know what I mean. I have been making a point of periodically shutting the computer down and going outside to sit in my backyard and reconnect with living things... trees, birds, flowers. That helps me shake off some of that computer brain buzz. Also, stretching is very helpful too. And the beach is most helpful of all, when I am able to get there.

    Like so many others with ME/CFS, I have not had much in the way of empathetic support until I arrived here. So I am very grateful this forum exists. I learn a lot here, I feel welcome and supported and understood in ways that I have never felt before. And sometimes I even have a REALLY GOOD laugh.

    I think every one has to find the right amount of time that feels comfortable for them to be online, and this will often change according to the day, one's mood, one's overall health status, and one's need for less or more connection. It's not something that you can figure out in advance. You just have to tune in and feel out what will work best for you in that particular moment.
     
  19. WillowJ

    WillowJ Senior Member

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    I agree; this forum and other such places fills a need to research/learn about my condition, contribute to making a difference, and 'talk' with others who are having similar experiences and actually understand.

    I would say the reasons to think about cutting back on online time would be if there is physical payback (particularly at an amount one thinks is unwise to put up with), or if it's taking away time/energy from something else one wants to do and actually can do. Getting some fresh air and stretching (if one can) is a good thought.
     
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  20. Dainty

    Dainty Senior Member

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    I find that for me, it varies a lot depending on how I'm doing and what stage my life and health is at. When I first joined PR I would lurk for a while and then go weeks or months without logging on because I often didn't feel up to discussing my sickness or listening to others discuss theirs who had the same problem as me - I found it too depressing. So I would simply slip away whenever I needed to and come back when the negative effect was outweighed by the positive effects of "understanding and being understood", as Neilk put so eloquently.

    Over time, the reasons behind the amount of time I spend here have changed. Currently I've been experiencing the first genuine improvement I've had since I became severe 6 years ago and I have a solid direction to go in improving my health. As such I'm going through a time where the prvious practical reasons for being here (e.g. research, distraction, lifestyle tips, etc) don't apply at this moment, so I'm naturally spending less time here and enjoying new ventures. That's a good thing.

    It's going to vary by each individual and where they're at at that time. As incredibly self-aware as we are, I don't think we always know for ourselves when it might be beneficial to focus more on other things, simply becuase we often do not have the mental and physical energy to consider, initiate, and experiment with such. The ME/CFS community is more or less a "safe bet" that our participation will be personally satisfying on some level, and I know for me much of the time I just didn't have the "oomph" to try out other things instead that might be less rewarding or unexpectedly hurt me. Close loved ones can help with suggesting and initiating things but they have to be able to do it on our terms based on what we can afford to risk, because we can be in such a fragile state that any expenditure that doesn't directly help is directly harmful. So while focusing on non-illness topics is often very good, it can also be rather risky because we don't have the luxury of trying out a bunch of things in addition to doing what we depend on for day-to-day sanity; for us our limited physical and mental resources demands more of an either/or approach so it's a much trickier process.
     
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