Every night before i go to sleep i send hubby a goodnight message.
I know he won’t see it or even know that I’ve sent it but what I’m hoping for is that by some miracle he will somehow get better and be able to read them.
It’s like a diary of the things that have happened every day. Of how proud i am of him. Of how me and the kids miss him.
Its been 4 weeks and 1 day since he was admitted again. Its been the longest weeks of my life. The transplant was a breeze compared to this. I can tell you anything you want to know about CML but this whole brain thing has got me stumped.
Google has not been my friend. Its so stupidly rare that all i seem to find is medical papers ( one from Japan so that was helpful! )
All i want is a tiny bit of understanding but it seems that this time even that is being denied to me. The brain is a complex crazy thing!
So all i can do is sit there and try and help him. I watch him for hours and hours every single day trying to anticipate what he needs.
He’s bedbound. He struggles to communicate. He cant feed himself. He cant see to grab his bottle of water and if he does by some stroke of luck then he cant drink by himself. He needs help for the loo. He needs help to turn over in bed.
And on top of all this he is in constant pain. We all moan when we have a headache but this certainly puts that into perspective.
If he can get through this i fully expect him to be hooked on opiate medicine.
People/friends/family ask how i am on almost a daily basis. I say I’m fine. It’s the done thing isn’t it? I know I’m not fine and so do they but what can anyone actually do if i was to say I’m not ok.
It just makes the conversation uncomfortable for everyone. And on a very basic level i am fine. I look after myself as well as i can so that my children and hubby still have me to look after them and then when i can finally fall into bed emotionally drained and physically exhausted thats my moment when i don’t have to be fine.
I know i normally pepper my blogs with pictures but today i don’t feel like looking for a funny anecdotal picture..
I hope all the people that know me will forgive my lack of communication and that I’m doing what I have to to get through each day.
And more than that i hope everyone enjoys Easter and never takes for granted the time they get to spend with the people they love.
If this has taught me anything it’s that you really do only have one life. Take a moment to think about those less fortunate then go and grab life with both hands.