People have this idea that I am a Lady of Leisure.
I have no job, someone else does all household chores and I even have someone cooking meals for me. Wow!
How the other half live, right?
On the other hand you work all day then come home and have to tidy up, do the laundry, cook a family meal, get the kids sorted, do a bit of cleaning and then fall into bed only to do it all again the following day. What you would give to be able to just chill in bed, right? How lucky I am that I have these people doing all these things for me, right?
Choosing to stay in bed means you have the option of getting up and doing whatever you want whenever you want.
Being Stuck in bed is a different thing altogether. To say that we have lost our independence does not begin to explain how we truly feel. We are dependent on everyone around us and feel more like a one tonne burden than a person. We struggle to manage the simplest of tasks, are always frustrated with ourselves and are petrified of not being good enough parents. And we would give anything to be able to do it all without any help.
Sometimes I wake up and think I’ll make pancakes for breakfast then take the kids to the park and run around with them but when I actually try to do it I am flooded with the reality of my body not following my brain.
Years ago I read something another lupus patient said and it really struck a chord, “It is like my brain is in fifth gear but my body can’t get out of first.”
Please do not be fooled into thinking that we have taken an easy option or that we are just being lazy or that we lack motivation to go out and start ‘living’ because, though it may not seem like it, we are already living and we’re doing the best we can.