Sunday, 18 February 2018

Lupies Will Understand

I'm sure lupies will understand these things, healthy people might not.


  • Having to do something important, that involves speaking, when you have a massive ulcer on the tip of your tongue.
  • Going on a short trip, and having to take an extra bag for your medication.
  • When you have a choice between going out and having fun, and having a nap, choosing the nap.
  • Writing absolutely everything down, because otherwise you will forget 90% of it.
  • Checking your pill case five times in an hour because you keep forgetting if you took your pills.
  • Drinking coffee by the litre because otherwise you'll fall asleep, then not being able to sleep when you need to.
  • Postponing dealing with a crisis because you have a doctor's appointment.
  • Getting exhausted doing nothing
  • Not knowing if something new is a symptom or a side-effect.
  • Doing things you know you shouldn't because you're just so sick and tired of being sick and tired.

Tuesday, 13 February 2018

And this little lupie went wee, wee, wee

Let's talk about an embarrassing little issue that some lupies have.  Actually, I was afraid I might be the only one, but I've since found out there are others.

I've always had a little bit of stress incontinence, (advertisers now call it "light bladder leakage") ever since I had my kids, who are now both in their 20s.

Lately, it's been getting worse. More than that, I've been horrified to discover I've wet the bed a couple of times.

So, off to the GP.

Her first question: how much water do I drink?  Well, because I have a horrible problem with dry mouth, a lot.

Next question: do I still do pelvic floor exercises?  Yes, I do.

The options she gave me: a pill for the night time, but it would leave a dry mouth.  I balked at that because I have enough trouble with dry mouth as it is.

The next option was some surgery to correct the leaking when I sneeze or cough.  I've had more than my fair share of surgery, so I wasn't really enthusiastic about that either.

I opted to think about it and get back to her.

Back home, I started to think about her first question again.  Just how ridiculous an amount of water do I drink each day?  I decided to try setting a limit - not so little water I'd be in any danger of dehydration, but less than I've been guzzling.

I have been tracking how much water I drink - limiting it to about ten to twelve cups per day.  So far so good - no wet bed, and not even any little leaks with coughs or sneezes.

Of course, that leaves me struggling with my dry mouth. I'm sipping my allowance of water really slowly, and making a lot of use of moisturising mouthwash, mouth spray and gel. (The brand my local pharmacy has is Biotene, but there's probably other brands of the same thing out there.)

It's quite typical of living with lupus that anything I do to deal with one problem makes another worse. Hopefully, I've found a balance with this particular issue. 

Do other lovely lupies have this problem?  What have you found to help?