"You're looking great!" - the reality of life with microscopic polyangiitis

I'm told that I have a disease called microscopic polyangiitis, a type of vasculitis where the immune system starts attacking the cells lining the small blood vessels, mostly in the kidneys.  Nobody knows the cause of the disease, few people have heard of it, and (in my case anyway) it presents with few, if any, visible signs that anything is wrong.

Here's how I'm feeling at the moment:

Lots of minor symptoms which don't amount to much on their own, which many people experience and often consider normal.  Added together they make me feel horrible and poorly.  At the moment these include: lost appetite (which has led to speedy weight loss), nausea, tiredness, aches, random unexpected and very long period, muscle cramps, itchy and sore eyes and itchy skin which comes up in a sort of rash which comes and goes.  Quite a lot of this has just developed in the last few weeks after my having been fine for ages since I started treatment.

Sometimes I feel a awful and get home and do a lot of nothing.  

Mostly it's minor.  I'm still working full time teaching a class of four and five-year-old's and doing all the planning, preparation and assessment that goes with that.  I'm still out walking the dog at 6.15 every morning.  I'm still (mostly - sometimes I can't be bothered) doing the groceries, making sure the children do their homework, cooking, doing laundry and housework, going on holiday and even applying for (and getting!) a new job.  

Sometimes I feel completely normal and fine.

Mostly, how I feel can vary from hour to hour.

Here's what the doctors are telling me:

• my blood pressure is too high
• I still have blood and protein in my urine which indicates that my kidneys aren't functioning properly.
• My blood results (about which I'm still woefully clueless) are not showing enough improvement.
• I need another kidney biopsy to see what's going on and what to do next about the treatment.  (Had this earlier this week)

Here's what other people are telling me:

• "You're loads better than you were in January/February" (before diagnosis and treatment)
• "You're looking great!"
• If I'm feeling a bit rubbish then it's, "That's probably from the steroids / treatment / medication."  or "it's just because you've got a cold though, isn't it?"

Which basically leaves me...

Completely confused and unsure, unwilling to trust what I'm feeling at all.  I don't feel right, but I'm not actually poorly (not compared to others I hear about with this and other illnesses).  Maybe this has all been some horrible mistake and there's nothing wrong with me at all?  Perhaps I'm imagining some of these symptoms?

When people ask, "how are you?", I'm answering quite truthfully, "I really don't know,"

That's what life is like for me with this disease at the moment.  I have absolutely no clue whether anything I'm feeling is real, whether it is connected to the disease or completely unrelated, whether its a side-effect of the cocktail of medicines I'm taking, or even just normal.  I'm hoping that after my next clinic appointment next week I might have a bit more idea what's going on.

Just venting really.  Tired of it all.  Fed up and wish it would go away.