There’s been so much that I've wanted to write recently, but not got round to it. I've been taking some photos around the house for some time now, and meaning to post them, as I think they can say a lot, whereas, I just don’t have the time or energy.
Some of these photos seem so old now. I just wanted to share them as I think they best describe some emotions which are unimaginable to most.
Daily Meds. Don't underestimate the straws.
September. July, August and October look pretty similar
Fridge magnets. Some baby photos, kids drawing, Oz's swimming certificate
and a whole bunch of emergency numbers.
Our bedroom. I rarely sleep in the single bed, it's usually just for sitting on.
Again... our bedroom.
Our bathroom. Months ago, before the commode and bed baths.
Oscar now has a bit more space.
Our toilet. All three.
This is why I'm tired. This is why Neil is banged up in Hotel California for a couple of weeks.
I have to admit that this was another cry for help.
Neil's writing on the blog was, as ever, of a humorous nature, and I needed to feel like I was telling the real story. I knew, back then, that there would be a need for these photos if we were ever going to raise awareness and show exactly how much care and attention a person living with MND needs. Neil and I knew we were lucky, with so many willing friends and family, we knew our situation was made ten times easier with their physical support. They helped me lift, clean, cook, feed in an endless circle.
The disease isn't any easier on people who don’t have this level of personal support. We both felt like we had to shout about that. I didn't have the time or energy to do this with words most days, so I started to take photographs. But the day I published this, I was using them to shout selfishly. I just wanted to counteract a bit of Neil’s humour and say, ‘it really is this difficult.’ – Louise (2013)