Monday, 7 May 2012

The Cost of Lupus

Lupus Bites: And it costs more than physical health.
The kids aren't really kids anymore. Although they keep their beds and clothes here, they're not physically here all that much. That's not a complaint - they really are good to me. When they're here they help me out around the house, and they really do care about me. We still have some good times together.

But with them gone so much, even such a small house gets lonely.

I guess I'm feeling extra-alone at the moment. Someone special to me has told me they have begun a new relationship. I'm honestly very happy for them, and do hope it proves to be everything they are looking for. But this person also said: "I hope you find what you're looking for."

That's what got to me. I kind of stopped looking.

When even walking is painful and all I want to do is lie in bed all day, how do I find the energy to be looking for anything? How do I look for a relationship, when at the moment I feel that I am so sick that I have nothing of value to offer - but only a very great need? When I have trouble simply doing my own dishes, or doing my washing, how can I invest time and energy in dating? (Time, I have. Energy, I don't.)

So now I'm lying on the couch, reflecting on all that lupus has taken away from me:

  • sport (I used to do martial arts, believe it or not, now hydrotherapy exhausts me),
  • my full-time ministry (I'm now only very part-time and often don't feel I fulfil that at all well)
  • energy
  • the ability to plan ahead (because now I don't know ahead of time if I'll be well enough for what I plan)
  • independence (there's so much I have to ask for help with, that I used to do for myself)
  • financial security (that left with full-time work)
  • gluten (and now often meat - because even the thought of meat makes me nauseas)
  • everyday activities (I have to wait for a good day if I need to do shopping)
  • confidence (I used to never forget a name or a face or a story - now I can't remember if I took my pills this morning - I'm no longer sure of what I know or remember)
  • reliability/responsibility  (I used to never miss a deadline, and if I'd committed to doing something it was guaranteed to be done - now everything's conditional on whether I can get out of bed)
  • physical strength (I guess that goes with sport - there's so much I used to be able to do that I took for granted - now I need gadgets to help me open jars  and changing a tyre's out of the question etc).

I can't blame lupus for taking away the relationship I had. But it is certainly taking away any energy I might have to search for a new one. 

There is a very sweet man I talk to on-line daily - but he can't come to Australia to meet me because people over 30 can't get a working holiday visa and he can't afford to come out if he doesn't work. There's no way I can afford to travel overseas. So we will never actually meet. 

Dare I hope for anything more? At the moment, no. But perhaps I will not always be this sick. I was comparatively well while I was seeing Mr Wonderful.  Maybe one day I will be that well again - and be able to find someone I can share my life with.


  1. I have been much worse than what I am now.Compared to how bad I have been I now say I cannot complaint, but the truth is that Lupus has taken a whole life from me. Being 32 I cannot do all those things everyone can do and I completely depend on others, which is not nice..
    Back in those days I want to forget so much, my partner used to tell me that I'd get better, that one day I would look back and laugh at those awful days in which I couldn't even open a door... Hearing that got me sooooo angry!
    But time has proven him right. Now I feel better, although feeling better does not mean I am ok.
    But, hey, here is the thing: there is hope for all of us. Guess we only need to focus in the good things we have, because we all have the good in our life.
    Take care. I am sure you will find Mr. Perfect :) or, better than that, he will find you

    1. Lupus does take so much from us that it can be hard to see the good things some days! I'm glad that you are more well than you have been - and hope that future flares don't take you back to that point. Thank you for your words of encouragement for me.


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