Sunday's baptism was lovely. The boys were well behaved and it is always nice to get the family together, but then came Monday morning!
You see I have this terrible problem at the moment that I think I have spoken about recently....I like to think that I am completely well. I am lucky that the drugs I take help this illusion, but that is all it is.....an illusion, but unfortunately I am able to treat my body as though it's real so it suffers the consequences. Hence the Monday morning crash!! I actually haven't been right all day and I am struggling already and it's only 8:30pm!
My nurse actually got cranky with me today for doing too much yesterday. She says she hates to do it, but someone needs to ground me as I will pick the smallest amount of energy and I am running it until it's destroyed. Not only destroying any potential future energy and health but destroying what I have at the moment. I have to remember that I am sick, and I MUST rest to beat this thing. She actually put it very well....she said that every moment I am fighting sleep, I am using energy that should be fighting the disease. I don't mean to be a bad patient, it just is all a bit surreal still, and now even more so.....I wasn't supposed to be here.......that's a really weird feeling. I don't know how to explain it, but it's like I am cheating death, somehow doing the wrong thing....anyway, I can't put it better than that so I'll leave it there and hope that you will understand what I am trying to say.
My nurse's job is to keep my quality of life good and make sure I am looking after myself, unfortunately that sometimes means she needs to say stuff I don't want to hear like it's OK to be thinking I will get to Christmas with no hiccoughs but that expecting to get to moving day, which is 9 weeks without anything going wrong may be a little too optimistic. Things can change in a heartbeat, and as my doctors said at the last scan results it can all turn bad in a heartbeat. They aren't being negative, they have seen it happen lots of times. People stop taking care of themselves and they don't want me to do that!
So I will make sure I take more care, and rest everyday and remember I am not super woman and that I am still sick.
Well, I'm off to sleep now, for some well earned rest! xxx
NEVER, NEVER, NEVER GIVE UP!!!
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Let everyone who loves you take care of you! You have enough love from everyone to be able to get your rest and keep you going.... xx
ReplyDeleteI say ditto for what Gen says... dont be afraid to ask for help as well ... and that means both you and Jason!!!! You know that we will all be there at the blink of an eye!!
ReplyDeleteLove you and take care.. we will see you when we get back from Cairns
xoxoxox