Sunday, November 21, 2010

Return of the blog: editiovultus phobia

Morning to you all.

I've decided to make my slow return to the world of blogging, after an almost complete absence from cyberspace for nearly two weeks. My double life caught up with me during the last month, I had to take a break.

During the break- with was accompanied by extreme exhaustion and pain- I have been thinking - as one does when not busy. Thinking friends- friends I can see in the flesh- friends I mainly talk to one the phone, as they live in other countries- and friends I made on Facebook and here through my blog.

Why is it that when one makes friends on Facebook, one feels almost compelled to let them now why I will be 'going into a cave for a while'. Many of my 'flesh' & 'phone' friends don't know I have been unwell and that I have been in 'hiding'. I don't communicate with them every day.

Yet the fact that I DID communicate with my Facebook friends, with YOU, brought me lots of support during my time of recovery. I would like to thank you all for this. Your messages appeared in my email-box and, especially during the first few days, brought me to tears. Tears about worsening symptoms, but mainly tears of gratitude for such amazing supports in a few words and images. Again, thank you!

But, there is a but. When I did click on one of the messages in my email-box, my body/mind seems to be going into 'fear' mode. While the box came up asking for my password, I felt my body stiffening- I experienced a fear of being faced by so much information all together on the one page. I couldn't deal with, and still have difficulties with- an overload of information. Energy is a precious commodity.

But the longer I stayed away - the more there was to catch up with- so many friends. (But is this real? I communicate with my 'flesh' & 'phone' friends every so often and we'd fill in on each other's news. Facebook is such a different form of contact - isn't it?) My fear that I would feel worse again after being on Facebook was real, I wanting to save my energy for recovery and writing.
What I decided on, was to say a quick thank you and leave.

Does this 'fear' make sense? I found a word for it- Editiovultus phobia (derived from the Latin words meaning "face" and "book" see uncyclopedia Editiovultus phobia)

I felt the responsible to keep up with others. Yet I miss being in contact with the friends I made. You know who I mean. Those Facebook friends whom I count as my real friends now. Friends that I might never see in the flesh- unfortunatally- but who are very important to me. I think about you, wonder how you are doing, and feel that I am not a good friend if I don't respond to your messages. I know you understand- many of you probably feel the same as many of you are also living with M.E.

That brings me to my other facebook-related-fear, my Editiovultus phobia. Talking about M.E.
Being friends with people who deal with the same illness as me, can be such a relief, as you understand what I am going through- as I understand you. Yet- now I am faced with worsening of symptoms again- all I want is to get away from reading about M.E. and get on with my life. M.E. is in my life- but I like to think that M.E is not my life. - If you know what I mean... This does not mean I want to stop having contact with you! Love you too much for who you are!

As far as I can make out, some of you on Facebook have come to the same conclusion and have started another page where the illness can be discussed. Good on you! For now, I am not ready to face that page until I have regained my 'balance' again.

So, where will I go from here?
Today I think that I will continue with writing a blog when I feel like it.
Maybe you- my facebook and twitter followers who visit this blog on a regular basis, might sign up to the "Follow button", and in this way, you can read my musings, and we can stay in touch.
I find the Blog less overwhelming than Facebook right now. It is one page and the comments left by you are easier to answer. I love reading your comments here!

In terms of Facebook- I might pop by every few days for a quick look, but for now I will keep my time there limited. Maybe in weekends, when I don't seem to do much writing- is a good time to catch up with you there. You are all in my heart! And don't want to loose contact!

Thank you all for your support and understanding, and I hope that you are as well as can be. Wishing you all a lovely Sunday!


Di said...

what can i sat . i just want to give you a hug and say ' don't worry so much . don't let a pleasure become a burden . its all okay . you just get better .we really do understand . undoubtedly some of us will be in the same position some time .we have to trust each other's integrity ,and believe the best of each other .and of our selves .you are a good person . a nice person ( in the strongest sense of that word ) and we care . We should take care of each other-what ever is happening .we should make a pact that if someone is off caving ( caveing ?)for a while , then the reason is valid, and we keep contacting regardless of response , unless we are told to stop .End of word overflow . goodnight my friend

Barry Fotheringham said...

This is something I've been pondering a bit too (I 'ponder' about mostly everything these days!). I've only recently got involved with various forums and stepped up my blogging efforts etc and, whilst it has enriched my daily life so much, I also recognise I am over-doing it. It's natural that we come to miss these wonderful individuals we've met who really understand what it's like to have a chronic illness. After all, most of us have spent the early years of illness surrounded by people who either cannot or will not step into our worlds.

I think though, as long as our facebook friends know we are consciously disappearing for a while rather than just unexpectedly vanishing (that can cause worry for obvious reasons) they 'get it' and we can gradually teach ourselves to let go of expectation and obligation.

The key is probably to get more in tune with our bodies and listen to the valuable messages we get based on 'how we feel'. We then must learn to respect those insights and act upon them, even if it stops us from doing all the things we want to.

Take care :)

John said...

I think almost everyone feels like this from time to time. Sometimes it just all gets too much to keep up with. Its interesting when you say that you feel almost obliged to explain or forewarn your absecnce to FB and Blogger friends in a way you dont fel obliged with real life friends. Never thought about that but its treu.

In the end blogs and FB are a way to communicate and link up/netwrok but when they become an obligation, a chore, then they've outgrown their purpose so it is best to hand back a bit and regroup.

I'm glad you've felt better enough (if only for a short while)to post. People who care will drop by and check on you when they're able just as in real life.

Take great care of yourself. I think a lot about you too :)

Melanie Murray said...

"When someone you love has difficulties, listen.
When you're feeling terrible that you can't provide a cure, listen.
When you don't know what to offer the people you care about,
listen, listen, listen." ~ Bernie S Siegel MD

I'm listening ... xxx

Corina Duyn said...

... can I just say... Thank you all, for your lovely hearthwarming replies.

Thanks for your real friendhips!

Lots of love

~Elise said...

i found your blog on barry's. it appears you've been blogging for a good while. i wrote my first post and began my blog yesterday. it helps me to read what other people with me are writing about. i have always wanted to write but worried about my grammar, punctuation, editing,etc... but folks like you and barry have given me the courage to dive in. i will heed your warning to try and not let it become an obligation, and hopefully continue to use it as both a creative outlet and a safe place to muse about life w/ illness. i really enjoyed yours. thanx for sharing yourself:)

Sue Page said...

Hi Corina
Gosh - we do share the same thoughts and feelings, we really do! When I was ill and couldn't come on FB for a few days, I felt like you do - that I neeeded to let my FB friends know and feeling responsible when I couldn't contribute. Weird isn't it, this FB thing? Like you I feel very close to some of the people I've met here, and they have become an important part of my life, evn tho we may never meet, and I know little about them. I think its the first time I've encountered people who truly understand - and I guess that's what links us initially at least - experience and shared understanding of an unfathomable illness - that is so hard to explain to those that are fortunate enough to not be 'in the know'. And then I guess friendships build in the normal way, only solely thro the written word. And with those friendships grows trust and understanding of each other and each others situations. I'm waffling!!.... but I've thought about it a lot too!
One thing I'm certain of is that you need to put yourself and your health first. If anyone understands, its us lot! We will be here for you, whether you appear regularly or not - We live in your computer remember, ready to pop up at anytime and for any reason you need us. I agree with Di, that it is important to keep contact with each other when "caving" - cos messages and pictures etc from pals sure brighten my day.
Take care x

Corina Duyn said...

Thanks Elise for topping by and I hope we'll meet again. good luck with your blog! Don't overdo it!!

Sue, thanks again for making my thoughts feel normal. I am not hte only one.
I am out of the cave and back to writing again. Loving it and do stop by at Facebook again, but at a more limited timeframe.

so glda to have you all as friends. Real friends who mean the world to me!