What amount of "forum activity" is proper?

[Nielk]

Thank you for the great points you all make.

There are different reasons that make sense to us at different time of our life/illness as far as how much we gain from
spending time on these forums.

As far as suggestions from close loved ones, I still feel a little ambiguous about that, because at the one hand, I don't argue with the fact that they want what's best for us but, at the other hand, do they really know?

They see us at our worse and feel our pain but, deep down, they do not experience what we experience. Do they really understand what an understanding post of a forum member can mean to us? Do they know how it feels to see others writing about the same experiences we feel? There is a connection here that we can't get anywhere else. Conversely, I do believe though that I, in the midst of my own illness, probably am not the best judge always as to what is good for me. I am too deeply involved. Sometimes, observations from "outsiders" can be beneficial.

 

[hurtingallthetimet]

nielk ...theres also the "ghost" times of being on the internet...dont know about anyone esle but i will sign on and forget about it forever...will be signed in all day and night at times....my mind is so half gone...id love to be able to do job online or something but with short term memory gone, and have to be on pain medications which impair all thinking as im sure everyone on here knows it is hard...

but thought id mention the "ghost" internet use...wonder if theres others like me...lol

 

[Dainty]

As far as suggestions from close loved ones, I still feel a little ambiguous about that, because at the one hand, I don't argue with the fact that they want what's best for us but, at the other hand, do they really know?

They see us at our worse and feel our pain but, deep down, they do not experience what we experience. Do they really understand what an understanding post of a forum member can mean to us? Do they know how it feels to see others writing about the same experiences we feel? There is a connection here that we can't get anywhere else. Conversely, I do believe though that I, in the midst of my own illness, probably am not the best judge always as to what is good for me. I am too deeply involved. Sometimes, observations from "outsiders" can be beneficial.

What I've found for myself personally is that they don't need to fully understand what I'm going through in order to be helpful, they just need to present their suggestions and initiation with no strings attached and in a manner that's easy for me to say "no" to. Since - you're right - they don't realize the extent of how fragile we are or how much we need what we're hanging onto, we must be able to object to basically anything, at any time, without the slightest bit of pressure leveled at us. Conversely, since it's so hard for us to do the initial legwork of even considering investing our precious time and energy into other things or even come up with the ideas, that's where they can be of the most benefit, in my experience. So then their role becomes one of helping us see the possibilities and, if favorable, take the first few steps, whereas our role is to decline anything that doesn't jive with what would be good for us at the time. With the right balance of relationship dynamics, you can begin hitting jackpots and it's actually really fun.

One example is that when I got a webcam a few months back, my dad asked me if I would also enjoy a camera outside so I could see what was going on outdoors (since my windows are covered). I told him I'd really like that. The next thing I knew he had purchased a high quality security camera and set it up inside my parents' home, which I cannot physically access myself due to sensitivities. Now, whenever I want to, I can look up what's going on over in their house, listen in, and even casually say hi if I'm up to it. They don't know when I'm watching so there's no pressure to participate at all, but I've loved that I can jump in on a conversation if I have something to say or I can just listen in the background. My dad has no idea how wonderful this has been for me. For the past 6 1/2 years all interactions with other people has been planned an intetional, and it had to be so due to severe MCS and how I had to be by myself as much as possible because I didn't have the physical or mental strength to have other people around. But now, I get the smallest glimpse of what casual interaction looks like, and I can practice it as often or as little as I want.

I'd say about 95% of suggestions aren't helpful for me at that time, and about 50% of the suggestions I receive become helpful at a later date, whether that's months or years down the road. The most important thing for me is that I don't feel any pressure to do it. Also, if someone else is willing to do the bulk of the work, that can also help a lot.

 

[taniaaust1]

One example is that when I got a webcam a few months back, my dad asked me if I would also enjoy a camera outside so I could see what was going on outdoors (since my windows are covered). I told him I'd really like that. The next thing I knew he had purchased a high quality security camera and set it up inside my parents' home, which I cannot physically access myself due to sensitivities. Now, whenever I want to, I can look up what's going on over in their house, listen in, and even casually say hi if I'm up to it. They don't know when I'm watching so there's no pressure to participate at all, but I've loved that I can jump in on a conversation if I have something to say or I can just listen in the background. My dad has no idea how wonderful this has been for me.

Wow dainty.. I think that is the most awesome idea Ive heard in a long time for someone who has severe issues. That is worth sharing to one of the ME/CFS societies about and how its changing your life as it could really be a life changer for others out there.

 

[taniaaust1]

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?

If being online in the ME/CFS is helpful to someone in some way.. I cant see how that then can be seen as "spending too much time".

This forum is like my doctor (i get some great medical tips here and often need the knowledge or ideas to take to doctors), my counsellor, my social life (cause I cant get out and meet people due to the illness) etc.

In my own case.. it also helps me to pace and stay off my feet (which I do need to do).. If I dont have internet and cant come here I get very bored or I over do things and make myself illner. Without this.. I either do too much or have to spend time in bed watching DVDS nearly all day.. and I hate spending most of the day in bed or watching TV. (this is probably healthier for me then doing that).

I think only one oneself can work out if they use the forums too much and should be out doing other things etc...

I myself leave myself signed in nearly all the time.. so I can go back and forth with different activities during the day.. here laying or sitting.. doing something on my feet for short while.. back here laying or sitting etc.