Lupus & Me

Lupus has taken its toll on me and my biggest fear is the effect on my brain.  I can feel the cognitive loss- it frustrates and scares me that I now need twice as long to understand simple things.  When I try to explain this loss to my doctors I usually get a look like I [...]

Epiphany

I had an epiphany this morning. Lying in bed completely flat and in that semi-awake state where you're awake but clinging to that last bit of sleep I realised that I was resting all wrong. I know it sounds ridiculous but for those of us with fatigue issues rest becomes a science.  For example, lying [...]

I definitely do not have the answers!

Children assume parents have all the answers and know what we're doing when in truth we're stumbling along in the dark winging it.  We have no idea!  Having a baby exit your body or your spouse's does not prepare you for the psychological minefield that is to come. There is so much preparation for labour [...]

Education?

I used to be one of these 'trust the system' people believing that all the people entrusted to provide things like care, support and education had the experience, knowledge and desire to do the right thing.  As I came to need the system I realised that it is all a façade- there is no 'one [...]

Small victories

Today was a good day. I don't often get to say that and it feels good!  The sun was shining, the temperature hit double digits, the clouds stayed away and I was up and about!  I even managed to get some time to myself. To be able to get my own medicine from the pharmacy, [...]

Glue trap

It is strange feeling to be so stuck- no matter how hard I try to escape it's pointless; there is no escape.  The harder I try the more tired I become and the worse the pain becomes until I am so exhausted that I just want to lie down and die just so the pain will stop. Before [...]

It’s just not fair!

We are very close to the end of a pretty stressful property transaction and I still feel like I'm underwater.  When we decided to move from the house to a flat it was supposed to make things easier for me and my wheelchair.  I never expected it to cost us so much and I don't mean just money. We found [...]