What world is this? What kingdom? What shores of what world?

Oh such a long time since I’ve blogged. I suppose I’m questioning the purpose of this blog already. Perhaps I’ve let myself get all soaked up in Anja’s depression. Perhaps I should back track a bit.

When I started formulating this blog, a few months into Anja’s relapse, things were bad. Anja was in bed 23 hours of every day, unable to read or watch TV, unable to speak – hanging onto the world by a thread. All following an attempt on her life by the amazing – and so far unmentionable – Dr Death (we’re not going to name him, but you will hear more about him).

Nearly a year on, and Anja is recovering so, so well. She’s out of bed for most of the day, can be out for up to 3 hours (on a good day mind), and can even go for 5 minute swims at the local gym.

There was a moment in the autumn when I started to recognise my sister again, and I stopped feeling like I was banging on the door of an empty house, knowing she was in there somewhere.

If you’ve had experience with this fabulous illness you probably know what I’m talking about, and how it feels when the lights start to go on again. It goes without saying that its the greatest feeling imaginable. You’re relieved because the threat to their life is less huge, and you get to welcome an old friend back.

So then the question changes. Because suddenly the world looks different.

Anja is no longer trying to survive. She’s stabalised, and – touching ALL the wood – recovering.

So the question changes. Its no longer how will I survive. Its ‘what now?’.

Before last spring, we’d all got comfy because it had been a decade since the great CFS world war one (age 16).

But what was once The Future, is now the (ME / CFS) future. One so complicated it can’t even be named under one banner.

What does the world hold for a 26 year old who can’t work a 9-5 without battering her body into 12 months of horrific, life threatening sickness?

What does society hold for someone with an illness which isn’t properly recognised, an illness which entitles her to the princely sum of £10 a week from the state.

How can you trust that all the boys aren’t Dr Deaths, waiting (months, years) till your darkest hour to shoot you in the face?

Where can you travel without damage? Who can you trust? How will you live?

As the worst of the psysical receeded, the idea of the future (non existant, incidental, pinned down) crept back in, and I’m watching it avanlanche on her: inevitable, overwhelming, desperate, impossible.

I might know that there is always a place in the world for beautiful, creative, hard working, charismatic, good people. That she’ll never struggle for money because she has the imagination to understand and work with her limitations. That she’s so surrounded by people they’d never let that happen anyway. That boys are often trouble, that she’s seen the worst of love, that there is always one that will make the world make sense instead of destroying it.

But then who the fuck am I? And what would I know anyway? My wisdoms collected from common colds and 2 day hangovers.

So what started here as a lifeline to the outside world, for my sister who couldn’t be in the outside world, still feels like a place which can’t reach her.

As always, she’s on her own, and all you can do is wave at her from the shore.
Anja in her room

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  1. Kelvin says:

    Awesome piece of writing dude, really awesome.

  2. Olly says:

    I too suffer from this awful illness and I can feel your sister’s pain. It is a lonely place to be. I found this blog as I have recently relapsed and was looking for some help/inspiration. I’m glad your sister is on the mend, it gives me hope! Anyways thanks for the blog, keep up the good work.

    1. kerstin says:

      Hi Olly, I’m so sorry you have to go through the horrors of relapsing. I’m glad the blog helped, I remember reading a lot of sad stories online and it takes some strength to remember that they aren’t your story, and that there are loads of really really positive stories too. If I can give you any info about her health regime let me know. Good luck and don’t give up.

  3. Olly says:

    Hi again, sorry it has taken me so long to get back to you but as you can imagine things have not been great! Any info or help would be appreciated. I know everyone is different and different things help different people but I would still like any help you have to offer. I assume you have my email from these posts so please get in touch if you can. Thanks, Olly

  4. kerstin says:

    Hi Olly, no problem, if you’re anywhere near as bad as Anja was last year I’m impressed you’re on a computer at all. I’m going to check the names of all the various suppliments etc she’s been taking and I’ll email you in the next couple of days.

  5. Heather says:

    This post is from a year and a half ago, so maybe you don’t check here anymore, but I just had to say it’s so refreshing to hear from someone who actually GETS how life-destroying CFS who doesn’t have it themselves. I’ve had it for eleven years now, and last year had one of those can’t-get-out-of-bed-for-6-months kind of crashes. More and more I think about how difficult all this is for my husband. We don’t live near family – it’s all fallen on him to do everything for me, in addition to being what almost amounts to a single parent to our 8-yr-old son. I’ve also had those scary what-does-the-future hold moments, for someone like me who can’t hold a regular job. I’ve been crazy lucky to be a published author with a salary my husband and I can live on while he goes back to school, but writing’s always a tricky business. I’m thirty now and my life revolves around the couch I’m sitting on right now. Yet overall, I’d call myself a happy person. I haven’t had that debhilitating kind of depression for years, even without anti-depressants. I think after so long of having this illness, memory of what it was like to be healthy seems so distant it’s hardly real anymore. In my dreams, I used to be healthy, then I’d wake up back to my sickness, but now I’m always sick even in my dreams. It’s hard still because I see all these healthy people on tv and on the street, but they seem kind of like alien creatures to me, like I couldn’t even begin to fathom their lives, nor they mine. Anyway, thanks for this blog and for helping your sister through the horrible valleys this illness can bring. Cheers, Heather Anastasiu

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