Parallel Universe

I live in two parallel worlds.  There’s the ‘healthy’ world, and the ‘sick’ world.  For my first 23 years of life I lived predominantly in the healthy world.  The next ten were spent exclusively in the sick world.  And now I straddle the two – one leg in each camp (maybe the strain is what’s causing my hip to play up 😉 ).

    I have a Facebook account which contains my:

  • extended family members
  • my close friends
  • my friends-who-aren’t-friends-but-it-would-be-rude-to-defriend friends
  • my haven’t-seen-them-since-I-was-seven friends
  • my never-spoke-a-word-to-me-in-highschool-but-have-strangely-added-me-as-a-friend friends
  • my sick friends
  • my sick friends’ sick friends
  • and the odd straggler (my Tesco delivery man, my local environmental health officer, the chap who built my fireplace and then hit on me).

It’s an eclectic mix and they all want different things from me.  I made a conscious decision when I opened my Facebook account not to discuss health-related issues on there.  It’s not a support group.  It’s not the complaints section of the Department for Work & Pensions.  It’s not the Samaritans.  There are people on there who I don’t want to share my personal business with as they would gossip about it all over town (and that includes some of my relatives!).  It’s just a light-hearted place to have a moan, have a laugh, discuss what I’ve seen on the telly or what I’ve read in the paper.  To share birthdays and events with.  And to read about what other people are up to or moaning about.  For me, it’s my version of going down the pub for a drink and a natter and to see who’s wearing the worst outfit 😉 .

I do post the occasional status update about something health-related, but choose my audience for that particular post wisely, basically excluding anyone healthy from reading it.  But on the whole I choose this Blog to discuss my ‘sick’ world, and Facebook to discuss my ‘healthy’ world.  It’s a tricky balance and some days I forget who’s who and which world I’m supposed to be living in!

When I first became severely ill with ME I lived solely in the sick world.  I was down to one healthy friend as the rest left in droves and I couldn’t even get dressed let alone do any of the things healthy people take for granted, like go out for dinner, or watch a DVD, or have a long girlie chat about nothing in particular.  Over the years I made new friends but they were all, without exception, ill. My whole day was about survival and it was so easy to become immersed in the world of the sick, in the fight, in the struggle.  Many of my friends are still there, consciously oblivious to the healthy world as if it doesn’t exist.

But my diseases are only a part of who I am.  I may have a body that’s falling to bits but my inner-self, the bit that makes me me, is still intact.  I still have interests outside of being ill.  I still love the world around me.  I still have a sense of humour (most of the time!).  I still have dreams of being a published writer.  Of visiting Rome.  Of having a Spa day.  Of finding love.  Of getting really quite drunk.  Knowing all the while that these things will never happen but dreaming of them anyway.

It’s a fine line to walk.  The two worlds co-exist but never mingle.  Healthy people can’t cope with the sick world, because it’s too painful to watch someone else’s struggle and to face their own vulnerabilities.  And it’s too painful for the sick world to see the healthy life they’re missing out on: the holiday tan, the new baby scan, the birthday parties and the Christmas dinner selfies.  There are times now when I’m really ill and can’t even think about the healthy world, and other times I’ve had a lovely day out and for a short while forget I’m sick at all.  There are times my sick friends are relentlessly earnest and serious and depress the hell out of me talking endlessly about nothing but illness, and there are times my healthy friends are relentlessly shallow and self-absorbed and bore the hell out of me sharing their latest drunken adventures.

I feel a bit lost and like I don’t belong anywhere.  There needs to be a third world for the walking wounded.

On a totally different topic, I noticed some of my readers have given the page which lists my symptoms a score of 3/5.  It tickled me no end.  How on earth do you get a list of symptoms wrong?  Do I have too many symptoms?  Too few symptoms?  Or maybe I don’t have the right symptoms?!  Just goes to show you can’t please all of the people all of the time 😉 .


6 thoughts on “Parallel Universe

  1. A reader

    Curious. I was thinking something along exactly these lines myself, only this morning. It’s not easy to get your head round it all, is it?

    This helped me to keep my balance a bit though – I’m not sure now where I first saw it. Amazing that it was written hundreds of years ago.


    This being human is a guest house.
    Every morning a new arrival.

    A joy, a depression, a meanness,
    some momentary awareness comes
    as an unexpected visitor.

    Welcome and entertain them all!
    Even if they are a crowd of sorrows,
    who violently sweep your house
    empty of its furniture,
    still, treat each guest honorably.
    He may be clearing you out
    for some new delight.

    The dark thought, the shame, the malice.
    meet them at the door laughing and invite them in.

    Be grateful for whatever comes.
    because each has been sent
    as a guide from beyond.

    — Jelaluddin Rumi,
    translation by Coleman Barks

    Liked by 1 person

  2. Hanne Scrase

    Great writing – very honest and balanced – I can totally relate to it – thanks for sharing your thoughts ! Best wishes hanne


  3. Elizabeth Milo

    Regarding your list of symptoms being critiqued, have you seen the film Amadeus? It reminded me of the part where Mozart is told his opera has too many notes and he says, “there are just as many notes as I require, neither more nor less.” 🙂

    And I’m a big fan of the people in the walking wounded world (www 😉 ).

    Liked by 1 person


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