bye social networking.

social networking is great!

i love it – not hypocritical.

BUT it is contact in a virtual way. it can be “LIKE” on a photo of someone you are not really in any contact with. or pretense.

For ME? it has been my “virtual social life” for a long time as i live a life of pain, fatigue and isolation. A world where my hairdresser may be one of the 4/5 people i speak to in the week. That was all i could manage but has become all i HAVE.

So i need MORE.

i need to someone ACCEPT my limitations and still manage to LIVE. not exist.

i need to TRY to be less tick-able, and more callable.

am SURE i will be criticised, but ONLY by those who doubt  me, discuss me, and find fault in EVERYYthing i do ,say or allegedly do or say. So feck that!

  • I am trying to recover ME from virtual world to real world-
  • allowing ME to be physically entirely different,
  • NOT clear on how ME will move,
  • to adjust to being the new ME that my BODY cruelly has created.
  • unclear on where i BEGIN to define what ME is acceptable to me
  • but realising that the current ME my physical ability and movement, my condition, allows me to have,
  • my current ME does not tally with the ME that my brain can host,
  • and that my social choices limit me from.
  • a LOT of “is this it” has gone into this philosophical wondering…
  • now we TRY to work out ME.
  • friends may even come and find ME!

This is where I am struggling.
Been here for almost 2 years.
First I hid from being desperately hurt.
Then I had brain surgery.
NOW my symptoms and most especially my leg weakness more or less leaves me housebound.
Has done now for almost 2 years.

How can I live fully with disability that limits me walking?
I have so much of the old “ME” left in me.
So much music that I am still able to do and I will
– on my own, with whoever asks and with Caritas. It makes me feel like ME

But am indoors now. Nearly all the time. It’s very difficult.
I need to learn a way to maximise what I can do.
Am for the moment leaving the virtual existence online – Facebook has made it too easy for me to do this.

You know where I am. Reality time to reflect. I need to live as fully as I can, and to adjust to how i am. And how to manage that more.
Thanks for understanding.
I will be back!
Helen x




  1. I live this life too. I have one friend, and she unfortunately moved to south dakota. Facebook has given me a way to connect to people that understand what I am going through, but I only talk through messaging and posts. The only “real” people I talk to are my kids, my 2 therapists, drs, and my best friend on the phone. I am basically bedridden from the endless pain. So I dont go out. the most I do is go to the grocery store with my family and by the time we leave I wish I had a gun to kill myself with and end the pain. Im not sure where I am going with this except I understand where you are coming from. I too, have so much of ME inside that my body will not allow me to use/show on the out side. I hope this makes you feel slightly less alone. Hugs and Love from a fellow Brain surgery survivor

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