Living Online

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.

4 Responses to “Living Online”

  1. You have just described my life. I got a viral infection in 2001 and never recovered. Reading the description of how your life have changed made me realize once again that I’m not alone in this illness. Yes, the internet makes such a difference to us. I think of people who had CFS in the days before the internet. The isolation much have made the illness almost impossible to bear. There are days that it’s almost impossible to bear with the internet!

    Thanks so much for starting this blog.

    • I’m glad that my blog has resonated with you, Toni. It’s SO easy to feel that you’re the only one going through this illness, and that no-one else could possibly know how you feel. I’m guilty of that totally unhelpful way of thinking, at times.
      One thing that my CFS/ME has added to my life, is that it’s forced me to explore the internet, and discover new ways to stay connected. I’d never have done this if I was living my old life. So, on days like today (when I’m more up-beat about life) I can see the silver lining…

  2. kristy Says:

    HEY SAM! it is your cousin from canada….. WOW…. you are such an inspiration to a lot of people! I am glad you are doing this to express yourself and network yourself…. i feel that you will do great things by informing people, talking to people and inspiring people! I didn’t know a lot about this illness or that you suffered from this until the blog and i have been reading up on this!
    I know you can get through the sad thoughts, the weak days, the pain….you are a strong person 😀

    I can’t wait for the day that the canadian families can meet you and your family…. we will make it happen 😀

    • Hey there Cuz,
      Thanks for posting your comment. I’m hoping that other people I know will also be inspired to find out more about CFS/ME. It goes a long way to enabling those of us with the condition to be accepted/believed. All too many people still believe it’s “all in our heads”, as we don’t have any scars or visible signs of disability. People believe scars, shrivelled limbs, hearing aids and white sticks. They find it harder to believe that (relatively young – in my case) healthy-looking people can be stuck in bed because of a long-term condition.
      On a lighter note (as I push my soap-box back under my bed), I plan on my next big holiday, after the wedding and honeymoon, being to visit you all in Canada! I haven’t done any actual planning yet, but I’m hoping it’ll be at the end of 2011 – I want to have a winter holiday! I’ll obviously be in touch closer to the time.

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