Essential Peripherals

Monday, August 3, 2009

I was thinking about how being a chronic, we are so isolated, and some of the things I miss are so very mundane.

I miss having a friend drop by for a cup of coffee or whatever.

I miss the type of chitchat I used to have with people in my homeschool group, talking about the fam, what little stuff was funny that day, they notice your new hair colour, they remember to ask about something you are into, you watch their kids growing up before your eyes ...

I have missed that desperately over the years. That's even with my kids and Al here to fill some of it in. And they can only fill it in a bit, because they are in the central part of my life. And we're talking peripherals.

And I think, ok these are not essential, strictly speaking, for survival. But ... it's like losing one's peripheral vision. (I've done that before during vertigo).

We may have the mainscreen of life, but all the little sidetrips that bring colour, and add context, and help us know where we are, help balance us ... are gone.

Forums are a good case in point. If they only focus on the important things, the treatments, research etc. while that is important, life changing maybe, the peripherals continue to ...disappear.

I know for myself, I can find the treatments etc. in a google search. And that stuff is not my priority since I seem to be healing without them. They make my brain hurt (truly) and they are really over my head.

I told Cort once I loved his site back in the day, before I knew him, in part because in his writing, he brought that stuff down to my level (Barely.:). I meant it.

What I was longing for, and have found a bit of on these forums, was connections with other people. I just haven't had that, for 6 yrs.

And half of me is SUCH a people person. I need alot of solitude, always have. But relationships with people make me come alive. :)
Likes: JaimeS

Comments

Hi Jody,
you wrote: "We may have the mainscreen of life, but all the little sidetrips that bring colour, and add context, and help us know where we are, help balance us ... are gone."

I understand so well what you are saying, I too, have the essentials, but the periphery is missing, and it is badly missed. It is true, it helps you keep the balance, it helps take your mind of the essentials, and sometimes that is just what you need, just to take some distance from them, even though you love them. it helps if you are in a different environments for a few hours, or occupied with completely different people or situations. You come back to your essentials with a clear and fresh feeling ....

And also, I think, the periphery helps you in expressing and developing other sides of yourself, and we all need that. Periphery I understand to mean things like for instance work, or casual acquaintances or friends, or even saying hello to the busdriver; the outside world.
Well, hopefully we can find some of that on this forum ....... (though I find the talk of treatments, causes, developments very interesting and helpful too.)

bettine
 
Bettine,

You said, "I understand so well what you are saying, I too, have the essentials, but the periphery is missing, and it is badly missed. It is true, it helps you keep the balance, it helps take your mind of the essentials, and sometimes that is just what you need, just to take some distance from them, even though you love them. it helps if you are in a different environments for a few hours, or occupied with completely different people or situations. You come back to your essentials with a clear and fresh feeling ....

"And also, I think, the periphery helps you in expressing and developing other sides of yourself, and we all need that. Periphery I understand to mean things like for instance work, or casual acquaintances or friends, or even saying hello to the busdriver; the outside world.
"Well, hopefully we can find some of that on this forum ....... (though I find the talk of treatments, causes, developments very interesting and helpful too.)"


I agree with everything you said.

And you said it beautifully. :)
 
Jody & Bettine,

this is an interesting post to follow.

I am the opposite of you both (in that I have to work full-time- pain/fatigue, mental fog or not).

I am lucky enough to have the opportunity to say Hello to the newsagent, the bus driver on the way to the market, the receptionist at work or whoever.

I have that small, but important, contact with the outside world. I have little chats to anyone who'll listen.

What was really lacking in my life (well, even before the FM diagnosis) was someone who understood my back pain, fatigue, constant headaches etc.

I really needed sympathy & understanding. I needed to share my anxiety. I needed someone to say "Hey, you are doing a wonderful job, you are holding your life together the best you can under this constant cloud of unwellness & pain" I needed someone to listen. It's not so much that I wanted to spend all day, every day complaining.

I just want someone to believe me (when I say it hurts & I can't bear the pain anymore). When I had a nervous breakdown in 1998 (which might have been a contributing factor towards the FM), several co-workers very smartly told me if I couldn't do the job, to leave & find another one. No sympathy whatsoever. When a severely sprained ankle & torn ligaments still hurt after 20 months in 1996, I was told to stop wingeing & limping - no sprained ankle could hurt that long. Well, after eventual ankle surgery to repair the unhealed damage & remove all the scar tissue which has made my ankle stiff & inflexible, I really wanted to shout to the world, "I am not a wimp, my ankle was more damaged than originally thought. I really DID have severe ankle pain & stiffness. I was not lying."

And I really, really want to commiserate with sufferers of ICI (Invisble Chronic Illnesses) all over the world. Be it CFS, FM, Chrohn's disease, MCS, arthritis, heart conditions, endometriosis, diabetes - you name it. Conditions that affect your daily routine & alter your life.

Even the visible disabilities, like the blind person who was waiting for a bus & wasn't sure when his bus number had pulled up at the stop. People walking around him totally ignoring him, until I touched his arm & asked him where he wanted to go & which bus was he waiting for? And fortunately, had time to actually wait with him & help him on the bus with a request for the bus driver to let the man know when he'd come to his stop.

Where has happened in this world where people don't have time to listen?

As you say, Jody, thank goodness for this virtual world where we can relate to each other & share our thoughts, share our experiences & talk.

Victoria
 
So Victoria,

Taking what all 3 of us have said, it appears that while some of us have more interaction at home, and need more on the outside like me and Bettine, for others like yourself, there is the outside contact but need for more intimate personal contact than is going on.

We are each of us looking for some balance, each of us have had pieces of our lives cut off and are looking for ways to ... get them re-attached.

There are many facets we all need in our lives to feel fully human and fully a part of life.
 

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