Getting back my bearings

by Laguna Lupie

Bali sunset

Amazing Bali sunset

“Enjoy Bali but stay out of the sun” my rheumatologist admonished before I went to visit Bali for a week last November 2014.  Most people go to Bali with the sun and beaches in mind so I didn’t really know what to do with that advice.  Good thing though, I didn’t really go there to be out on the beach.  We were invited to a conference by a world association of newspapers that gave us an international award for our company’s social responsibility program a couple of years ago.  It was to be a venue for this year’s awarding and a chance for past winners to meet up.  We were supposed to share best practices and gather ideas from each other on how to engage the youth with reading and journalism.

The conference was held at the world class Westin Resort in Nusa Dua.  We were feted, and fed and it was three days of presentations, the conference was relaxed and fun.  Not like our first time, when we were nervous winners and felt like fish out of water.  I still felt a lot like someone not in their depth, we were after all small printers amongst the world’s top newspapers and editors.  But being there to just listen and be amazed by the work many of the world’s newspapers did to engage young readers was inspiring and gave me the drive to continue with our company’s social responsibility program which lay stagnant after I gave birth and was subsequently diagnosed with lupus.

But the whole thing made me deeply sad as well.  I am an internationally awarded entrepreneur and we were there in that conference listening to other winners and hearing them talk about what they have been doing and I couldn’t join in, because I haven’t done anything new in the past couple of years because of lupus.

But despite that sadness, I also came home determined to get back my bearings and try to move beyond where lupus has brought me.  I tell myself that 2015 is the year when I take the tentative first steps to going back to my former work load, when lupus was not yet part of the equation.  When I get back to the things that have been halted because of the wolf. I sometimes think I have already adjusted to my new normal but to be truthful, it has been a long and painful journey.  And I’m not there yet.

I still dream about going on remission and getting back to where I was before this all happened.  Perhaps that’s me still in denial.  Because really, we all know I will never go back to the way things were before.  And so I try to imagine how to go about doing things differently because I have been in a rut these past couple of years and aside from this blog and not being so depressed, not much has happened to me in terms of work because I have mostly been in bed, exhausted with one new thing or another.

I want to get back to my old self has been this mantra. This silent wish.

My husband tells me that he thinks I can only operate on 50%-70% of my old capacity and that I should just accept that.  That I should start a new routine based on that and we will work from there.  Seems like a simple plan but it’s hard to plan when lupus keeps changing its mind.  But I have simple goals.  Like get up each morning.

You think that’s easy enough but when you wake up each day achy and feverish with flu like symptoms, it’s hard to get up.  I deal with that every morning.  Feeling so tired so early each day is hard enough, what bothers me more is that people may think I’m just being lazy.

I want to be able to stop prednisone or taper it down but every time we try to taper it something comes up and I get sick with something else and we have to go back up to where we were before. I am starting to hate the moonface this drug has given me.  I want to look like my old self.

I want to be consistently productive everyday but I am not able to keep doing that because of lupus fog.  It’s so awful this fog.  Sitting in front of the computer everyday trying to do your task and feeling so slow and struggling with your thoughts.  I am starting to feel I have gone dumb but know it’s the fog that does this to me.  There are days when it literally feels like you are trying to see through a haze.  And my head starts to hurt and that’s when I give up.  Those are the saddest times, when I know I can’t work because of the lupus fog.

And then there is the fatigue.  The feeling of going up the stairs and realizing you may not have the strength to get yourself through the door.  Of sitting down exhausted and gasping for air simply because you tried walking across the mall.  Such simple tasks that seem monumental with lupus fatigue.  I sit and envy the people walking briskly past me, I say to myself I used to be one of them, always in such a hurry.

I honestly don’t know how to get back my bearings.  How I can get back to work like before.  I always wonder and say to myself, I could have done more, maybe have a new business venture to run, if lupus had not hit me at my prime.

But the regrets have not been helping, and I realized this line of thinking was what kept me from moving beyond my new handicap.

It may be the fog but I don’t know what to say next.  I wish I had a plan but there can be no plans with lupus.  Lupus does what it wants, that’s what I learned these past couple of years of living with it.  What I have now are little nuggets of ideas and things that must be done that I hold on to each day.  That seems to work better than my old way of doing things.  Before I had elaborate plans and to do lists and schedules.  Now I just hold to one thing each day, and make sure I don’t forget that one thing and make sure I do it until I finish.

Like our website.  Our small company has been around seven years, we have a blog and free ads and facebook and twitter but no actual website. I had my former assistants deal with it but was never quite happy with their efforts and then they left for greener pastures and that was that.  I forgot about the website until about a month ago when I thought suddenly that the freakin’ website must be done and finished!

So it was this thing that I obsessed over and did each day until I figured everything out and did it.  It took me maybe a couple of weeks to finish but I was so happy with it and realized I can still do small things, despite the fatigue and aches and daily fevers and forgetfulness and fog.

It made me happy. It made me hope that I can still accomplish many things despite lupus.  One day at a time, I say.  One day at a time.

Will I ever reclaim my old self? Perhaps not, there is no old self anymore, not with lupus.  And this new self, it’s never going to be the same, will never be as good but it’s a self that I am wresting away from lupus. It is a self that I am reclaiming from the ravages of this disease.

I imagine myself rising from the ashes of this disease and feeling as if reborn and knowing that despite the frailties of the body, I will overcome.