Archive for 19/10/2009

Living Online

Posted in Long-Term Illness with tags , , , on 19/10/2009 by Sam Sadie

As I am often unable to leave the house (or even leave my room on particularly bad days), I have resorted to joining online communities. I am fortunate, as my M.E. hasn’t affected my ability to read and process information, to the extent that it has affected other people. I need to take breaks, but I can read a chapter of a book without it affecting my energy levels too badly. I do struggle with word finding (quite significantly at times), and this way of interacting with people via the internet, is less anxiety-provoking than face-to-face conversation, as I have time to construct my thoughts into meaningful sentences, and organising those sentences into (hopefully) coherent ideas.

My illness has turned me into quite the recluse, and the last time I participated in a social engagement, was my Registry Wedding and the “Reception” that followed at our house. That was on the 29th August 2009. And that was just over 7 weeks ago. I see my husband daily, and our close friends (a couple) at least monthly. Other than that, I don’t exist in the outside world. Not in the conventional sense anyway. I don’t work at present (I’m booked off on long-term sick leave), I don’t do grocery shopping, I don’t even see my neighbours for weeks at a time. I’m a non-entity. A concept. An idea. Everyone KNOWS I exist, but they don’t see tangible proof of that for months on end.

There is somewhere I DO exist. Where people see me, notice that I’m around, and more importantly, notice when I’m not. I exist on Facebook, on Twitter, on Bride’s Diary…and now on here. I exist as a username, an avatar, a photo. I’m still a concept, but I’m a concept with substance.  I’m not sure whether this fact is sad or amazing. Even 10 years ago, people like me would have had no opportunity at a social life, albeit an artificial one. They were completely isolated. I am so grateful that fate chose to hand me this illness in a time when social networking has shifted to the internet. It has allowed me to maintain contacts, form new friendships, and feel that my life has impacted on others. That my existence has touched the lives of others – hopefully in a positive way. Without these ties, I know that I wouldn’t have coped with this current relapse of my symptoms. I would have shrunk even further inside of myself. I am less confident in social situations than I used to be.  I worry that my word-finding difficulties will make me seem stupid, or that the energy it takes to seem bubbly and sociable will be all too much for me. The internet has left me with a sense of confidence in my abilities. A remainder of self-belief.

And I am grateful.