This song could have been written for Lupus warriors, although the title would have to be extended to “Those Lazy, Hazy, Crazy Days of Spring, Summer, Autumn, and Winter”.
Admittedly “Lazy” is not a good word to describe what warriors go through, as fatigue is one of those things that others (non warriors) find hard to understand but, “Those fatiguey, hazy, crazy days of summer” doesn’t have the same ring . Warriors are not lazy they are dog tired, and it is not because they have run a marathon it is just that they feel like they have run a marathon. The tablet or ipad becomes their new best friend as that is the extent of the exercise they can manage. The hard thing is convincing them that it is not a problem for the carer, as we understand. The response is normally “are you sure” and this is a response brought about by the “others” who don’t understand.
Oh yeah don’t forget the hazy days when the fog comes in and their thoughts come out 20 minutes after they first thought of them. Or they constantly ask “what are we supposed to be doing today?” I have got a good method going with Julie, e.g. if she is trying to think of a program on the TV but it will not come to her, I say “what is it about” and the same for a person “what do they do?”. It is good to find ways to overcome these issues and help out. The other thing that is a huge No No is “I have already told you that” or “we talked about this earlier”, that is just asking for trouble and you may want to duck to avoid the heavy object coming your way.
Did I mention that warriors are crazy people. Yep, on the good day (note I said day and not days) they decide that everything they couldn’t do over the previous days or weeks has to be caught up with on the one good day. This is all well and good in the morning, but by lunch time the body is saying “Woah there girl, what are you doing? you do realise you have a chronic illness don’t you, and that tomorrow you are going to be really sorry”, but do they listen, Nope, they go on and on and on. Guess what, next day we are back to the beginning.
Such is the life of the warrior and their carer (or bitch as I sometimes joke).