Sunday, 23 September 2012
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.