Friday, 24 June 2011

Everyone's an Expert

I'm sitting with my morning coffee, planning out my day. It's a housework day today - and I'm trying to assess which tasks are most important, and which I have sufficient energy for. I'm making a note of which joints are hurting (shoulders and left wrist) and planning out how to do tasks with the least possible stress on those joints.

My morning coffee and planning time is an important part of my day - without it - I tend to just get into things, and collapse in a heap when I run out of steam.

Much as I love my coffee, it has been suggested to me that I should give it up - that maybe I could cure my lupus by not having coffee.  In fact, I've been given all sorts of "cures" by all sorts of  people. Here's some of the best:

"My daughter cured lupus by giving up coffee" - lady at the gym (that's a sacrifice I'm not willing to make)
"I had lupus once, but it was just stress" - my half sister
"You're just really lazy" - my ex-husband (to be fair to him, we didn't know what was making me so tired then)
"It's just one of those things" - one of my past doctors who gave up trying to find out what was wrong
"It's one of the joys of being a woman" - another past (male) doctor with reference to my gynaecological issues
"Try not having your nap, see if you're less tired" - the doctor assessing my temporary retirement from work
"It's never lupus" - more people than you could imagine, quoting TV's "House" (The kids and I used to watch House, just waiting for the suggestion that it could be lupus.)
"You need something to boost your immune system" - naturopath at the local chemist - seems counter-intuitive when my specialist keeps giving me stuff to slow down a hyperactive immune system
"Are you sure you need all those pills?" - a nurse (yes, those are the pills my GP and my specialist tell me to take - and they keep in contact with each other about them.)
"Maybe you're just allergic to your pets" - someone who doesn't like pets

I've been told I need to do more, relax more, eat more, eat less, give up coffee, exercise more, exercise less, just get over it because it's all in my head (in blood tests, too, strangely).

I'm so grateful for the wonderful friends I have who don't try to solve the problem, they just accept me as I am, with my limitations. And if we're out and I say I need to sit down, it's coffee break time, and no-one says  I can't have my coffee!

1 comment:

  1. This is an important note - thank you. People want to help but some of these comments are so representative of those people everywhere who want to help - but cause so much frustration. We need to start listening to chronic illness with a mindset that says this is real - lets help figure this out. Lets look at the big picture and not jump on blaming the patient. It is so prevalent. Before my illness I too had times that I didn't quite believe symptoms of employees or distant friends. Now - it would be a different story. Wish I could go back and lend a different ear...

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