Isolation and Chronic Fatigue Syndrome : If a Tree Falls in a Forest ...

Depression can be a very solitary battle. It sounds like you have come through it though?

Don't sell yourself short. You are still standing. You are still here. You are posting comments on a website. :-) You are making your voice heard.

If you can't bring yourself to hope just yet, see if you can hope to have it someday. That's not semantics, not word play. I was so low at one point that I had to do that. Just, leave the door open to hope, and encourage it to come.

It did eventually, and then I was able to absolutely hope and expect better things. Some of them have come, I am still expecting the rest ... :-)

Jody

I suffered from depression for 3 years, and I found that the most frustrating part was that when you won the ifight in your own head, nobody else could ever know.
Congratulations on still having hpe through it all, you have done more than I ever could,

Hi Diane

Let's tweak things just a bit, and bring out the "specialness" of CFS a bit more, since it is a profoundly physical disease that affects everything including mental ability -- sometimes especially mental ability.

You said, "I see that physical limitations are much different than mental limitations." My mental limitations most of those chronic years, these last 10 years, have been huge. Much of the time, I couldn't think a clear thought. The elevator really didn't go all the way to the top floor anymore.

I knew it even then, that I was not the person I had been -- mentally. I didn't know if I ever would be again. As improved as I am, I am still not the person I was mentally, before. I can feel the difference.

There are areas of thinking processes that I still can't enter -- not physically able to follow that stuff, I am still dumbed down. And if I try too hard in an area I don't have sufficient footing, I will end up in smoke and confusion and maybe, even now in my better health, have to go sleep it off.

Where you refered to the "difference between the physical and the mental" I think it would be more like, the difference between physical and emotional. Emotionally, along with the angst and anger and despair and frustration and fear, I also had a drive to do things that, mentally, I knew I wasn't even capable of any more.

This is one place where CFS is assuredly not depression, is nothing like depression. It is depressING, but the lack of desire was not there, even when I didn't have enough mental ability to articulate what it was exactly that I wanted. I WANTED. I wanted to do. And I wanted to go. I wanted to be.

With only the occasional foray into a funk where I wanted to quit -- and that was usually due to the mental, the cognitive, limitations -- I never stopped wanting Life. And being furious about the fact that I couldn't have it.

I appreciate your responses more than I can say, Diane. I appreciate the fact that you are interested in the dilemma of the CFSer, and the fact that you really try to understand what it feels like. And I really appreciate your encouraging words about my writing.

Being able to write has been one of the things I've missed most over the past few years.

Jody

I do understand what you mean. I think you put it into words very aptly, even though I have never experienced CFS.

The drive to be part of life is critical -- without it, nothing seems to make sense (and worse, so many things seem to be stupid or worthless).

It's very good for me to understand the difference between the physical and the mental. In my depression I was prone to think that all chronically ill people would feel the same way I was feeling. But now I see that physical limitations are much different than mental limitations. That wanting to do something that you can't is actually better than not wanting to do it at all. That's a distinction I hadn't made before your reply.

When I wrote this: "But I do know that the internet makes connections when there seemingly are none, and helps people feel less alone even when they are. And I think that's why your writing stands out" I was answering your surprise at the following you are starting to get. I meant that even with the tons of information available to us on the net, some things still stand out and make a connection -- and your blogging is becoming one of those things.

Hi Diane

I have had a few bouts of depression, real depression, during this illness. And as awful as CFS is, I think if I had to choose, I'd rather have CFS than deal with ongoing depression. (That sounds wrong somehow :-) but it's true.)

Even when my physical symptoms were very bad, and even when the mental symptoms were bad, and it was hard to think with the brainfog and the fractured vision and thought processes, I would be angry, frustrated, feel sorry for myself, but ... I still WANTED to be able to do things even though I couldn't. When I was depressed, I didn't even have that going for me, that wanting to be a part of life.

This is very hard to express in words ... do you get what I mean?

When I couldn't even drum up a desire to be a part of life ... what did I have to work with? The drive, the desire, to get over my hurdles, helped to fuel my recovery. Cultivating positive thoughts (as muzzy as my thinking was) would at least help me crawl in the right direction. When I was depressed even that crawling ...stopped.

Even when I was really sick, I could still laugh at something funny, enjoy what my family was doing, enjoy ... Yeah, I guess maybe that was the difference. I was still capable of joy, even being sick. But with depression, there's no joy.

You said, "And I think that's why your writing stands out." It's probably my CFS brain here, I am not sure what you mean. Could you re-phrase?

Jody

Jody, I am not chronically ill, but I suffered through a pretty tough depression for a couple of years that left me almost unable to do or accomplish anything.

With therapy and medicine, I too worked my way out. But the impressions I made and the things I learned during that time haven't gone away. I never stopped seeing myself through critical eyes -- for instance, what was I doing in the grocery store in the middle of the day without a baby in the cart? (Meaning, unless you're working, you're worthless.)

I fell into this depression after the end of a successful 22-year career, so I was used to being a high-functioning person. During the depression, I found myself disbelieving how many things I used to be able to accomplish just in one day.

Chronic illness is as debilitating mentally as much as it is physically -- and maybe even moreso. I remember a day when I was driving in the car and something on the radio made me laugh. Genuinely laugh. And then immediately I stopped -- because i realized that even laughter itself seemed difficult. It had been so long since I had genuinely laughed that I had nearly forgotten how. I had forgotten what wellbeing feels like.

I have a great husband, who never forgot who I was at my best even when I was at my worst, and fabulous friends, who always kept a place for me right by their side. Without such support, I'm not sure how a person works their way out of a rough spot. But I do know that the internet makes connections when there seemingly are none, and helps people feel less alone even when they are. And I think that's why your writing stands out.

Hi Diane

You said, "If we met our steepest challenge of the day -- and yet it was a solitary action -- no one knows."

This is maybe the aspect that kills me the most. And I am not even totally alone, I have a family who cares about me. I can't imagine what that is like for chronic people who are living alone. It makes my blood run cold.

Have you also been, or are you, chronically ill? You certainly sound like you have the inside track, yourself.

I've been astonished by the response I've gotten to this article, here on EmpowHer, and on my own website, Ncubator. What I keep hearing, is, yes, this is how we feel; this is what it's like for us.

I was making dinner one night when the first line of this article appeared in my head. It's something I heard years ago, an old proverb, or beginning of an old joke, I can't remember which, that's how long ago.

And I realized, that is what I am going through right now. This sentence is the perfect analogy for what I am going through. And as I made dinner it began writing itself in my head.

It didn't get written down for months. But when I started writing for EmpowHer, and opened my own site, that gave me the extra push to write it down. And, I just wrote how I felt. What it was like for me.

Awesome to get the response, to find that so many other people feel the same.

Thanks, Diane.

Jody, there's no way to tell you the connection you build with an isolated person when you write so perfectly about their experience.

Only by having walked miles in those isolated shoes could you even know, much less write with such sensitivity, the emotions relating to simply being out of the loop.

If the outside world can go on without us, if newspapers are delivered and children attend school and jobs continue, if traffic swells, if the tv drones on, if people have successful careers, if all those things go on without us, we do feel insignificant. There's no way around us. If we met our steepest challenge of the day -- and yet it was a solitary action -- no one knows. And if our challenge was simply to get THROUGH the day, it may even seem to us that high-functioning people are some sort of alien tribe.

Keep up the great work. It's needed and wanted, and is quickly finding its audience.

Thanks Clint.

I have a hero too. My husband has held the household together, held the family together, held me together, for years. I have had the "luxury" of being able to go to bed when things are too much for me, when I'm not feeling well.

He has taken on the motto, whether he knows it or not, "The buck stops here."

He himself has fibromyalgia and has not been well for a very long time but he stands firm in spite of it. And he is my shelter which I have needed so much.

I write because apparently I have to.

The words have to come out somewhere and my family has heard 'em all. :-) And other people haven't been interested.

The reception I have found on the net is wonderful, unexpected, and something I'm really not used to anymore.

Your words mean alot to me.

Jody

A wonderful piece, Jody. Thank you.

I'm a 60 yr old man who's had CFS (for lack of a better name) for 10 years now. My wife is my hero. She is not only endlessly supportive, patient,and loving, but her ability to function and have an organized life gives me structure that, without it, I would have deteriorated to near complete dysfunction long ago.

I fear for suffers who lack my emotional and financial support.

Your's are some of the most meaningful pieces on the Web about the experience of CFS.

Keep writing!

Clint