Friday, 12 April 2013

lf I Could Turn Back Time

If I could go back in time to the day I was diagnosed and speak with myself, I probably wouldn't. I've seen
enough science fiction to know that never ends well.

But, supposing I did, the conversation might go something like this...

Me Now: Bit of a shock, huh?

Me Then: You can say that again.

Me Now: It explains a lot,  though.  All those unexplained aches and pains. Those rashes from sunlight when we were a kid. It might even explain the nose-bleeds, I've heard from some other lupies that they had nose-bleeds when they were kids, too.

Me Then: What's a lupie?

Me Now: A shorthand way of saying someone with lupus. You'll get used you it.  And another word you'll hear a lot is "spoonie".  Go to an internet site called and read the bit headed "The Spoon Theory", you'll get it then.

Me Then: So what happens now? What if I don't live to raise the kids?

Me Now: Well, I know you do.  But making that will you're thinking about is still a good idea.  Not because you're about to die, but because it's a good idea to not have to worry about that one thing.  You're going to find lots of things to worry about. First thing you need to learn is to work out what to do about them.  Some things you can do something about, some things you can't.  If you can do something about them, do it, because that will cut down on your stress levels.

Me Then: It's all just a bit overwhelming. Can you tell me some of this after I've had time to process?

Me Now: Do you know how hard time travel is? This is the one chance.  After this you're on your own. Technically you are now since I'm you.

Me Then: So just tell me what's most important. If you're me, you know I'm having a bheit of trouble getting my head around it.

Me Now: OK. This is the big thing.  It's going to get rough. You're a single mum, in the middle of a divorce, starting out with nothing again, and two kids. Now you're just starting to get sick. You're going to get much,  sicker.  You've just started to get your life re-established, and it's all going into turmoil again.

Me Then: Well, that was very reassuring. Thank you so much.

Me Now:  No, what I want to say is this: You don't have to do it alone.  In fact, don't try it alone. Just for once, don't be the self-reliant superwoman. Find a support network, and start looking for one that suits you straight away.  The people you normally turn to for support and advice have no idea about what you are going through and what you can expect for the years ahead. Some of them are going to minimise it all, because this is so far outside of their experience. Find other people with lupus.  Find groups face-to-face and on-line.  And don't worry too much. Things will get bad, but there's nothing God can't get you through, and you are about to meet some of the most incredible people in the world. You'll find them on the internet - look for lupus support groups, that will get you started.

This post written as part of Wego Health's Health Activist Writers' Month Challenge.

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