Well we have decided to take a break and have gone to Perth to relax, now relaxing for normal people means a lie in until 9am, with a lupus sufferer things are totally different. You cannot make plans as more often than not they are cancelled at the last minute due to a multitude of things such as fatigue or pain. So as the carer it is easier to say we will take one day at a time, also planning things can be done but don’t fix a date and time to do it, work with your partner, make a list of things you would like to do but not when you want to do them.
The other thing is be aware that your partner may feel really bad about what they see as “letting you and other people down” they are not, it is the Lupus that is letting THEM down.
The last couple of days have been pretty bad from my perspective, Julie has started to lean over to right, she even walks to the right and has to be nudged back on track, there is also a stoop to deal with that only appears when things are bad. It is thought that she is developing Cerebral and CNS (Central Nervous System) Lupus, which is scary to imagine. She is confused easily and forgets things told to her minutes or hours ago, she sounds like she has been drinking, slurred speech etc, yet I know she has not had a drop. It is hard having to repeat things over and over and I have to bite my tongue when the frustration levels rise and I have to remind myself that it is not her fault.
So it is nearly 10am and I will be waking her up and we will see what we can do today.