Sunday, 23 September 2012


Lupus changes everything.

One of the things I've found hardest to adapt to is that everything constantly changes - in a day I can go from feeling good to being in agony and too tired to get out of bed.

Dealing with the changes lupus has brought me has been a process of grief.  I have had to give up things.

I've had to give up trusting my body to be able to do the everyday things I used to take for granted. I've even had to give up the kind of shoes I love to wear.

I've had to give up being able to work through a whole day like a "normal" adult - and been left with having to have my afternoon nap.

Lately, I've had to give up the assurance that I can always count on my own mind and memory.  Brain fog has become a major problem - and the worst is that I think I am behaving rationally and it is only after the event I discover the things I've done.

One of the biggest things I have had to give up was my work.  I'm a Christian minister - and that's not just a job, it's a holy calling. It's something one does, not for the money (because there's easier ways of making more money), but because of a sense that this is the one thing I was created to do.

About four years ago, I had to give that up, completely.  I had used up all my long service leave and annual leave one year, had a year of sick leave, and then was confronted with the fact that I was not well enough to continue, and had to retire on health grounds.

I had a year of doing nothing at all that I could consider constructive.  Then a year, where I helped out in my local congregation by preaching once a month.  Since the beginning of last year, I've been doing part-time "supply" (filling in where a permanent appointment has not been made) ministry. I love my congregation dearly, and the little bit of ministry work I do helps me to feel I have a purpose in life again.

But now, I'm at a crossroads.  Brain fog has become so bad, that I just don't trust myself any more. I have to consider that the point may have been reached where I am a greater burden to the church than I am a benefit.

I think I'm in a better position than I was four years ago.  Since then, I've established this website, and its accompanying  Facebook Page, and I've started on a Google Plus Page. It gives me a sense that this time around, I have something worthwhile to do when there's nothing else I can do.


  1. The person who wrote this sweet blog sounds to me like they would write a good hearty sermon. Modify the q and a's, if your not feeling quick on your feet. Do like you do your blog, write it down. It would be ashame to miss out hearing from someone so enlightened and potentially helpful to others who may be suffering. HUGS, Julie

    1. Thank you so much Julie. I really appreciate your encouragement.

  2. Hi Iris
    lupus is a horrible disease and I wish that I didn't have it, but I have and I have to learn to live with it. I read your blog every day and I wish that I had the strength that you have, you inspire me in lots of way. Despite Lupus we will survive. Love and best wishes

    1. Hi Terri
      I wish we didn't have it either. I wish it didn't exist. Thank you for your support. Hugs.


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