I Can't Sleep

MailOnline.jpgIt’s the middle of the night and I can’t sleep…

I don’t get much sleep most nights because my husband is dying in the next room. I got less sleep last night because Oscar was coughing and I was scared he would wake up Neil. I can’t sleep tonight because, just before I went to bed, I read comments left on the Daily Mail website about our article and some people took the opportunity to tell us how irresponsible and selfish we were to have had a child. 

In the morning, I have to get up and tear myself between a one year old and a man who is literally dying before my eyes. We’ve chosen to tell our story to benefit others, not for the scrutiny of ourselves. We got through Christmas and New Year without upset. Now I’m exhausted and disappointed, and just when I think, ‘It can’t get any harder than this’, it does… every time.


There was nothing else I could do to relieve my anger. The more I lay in bed and let it bubble through my veins, the less chance I had of sleeping at all that night. Sleep was so precious and every minute I tried not to think about these comments was a minute more lost of sleep. It must have been about 2 o’clock in the morning before I finally gave in, crept to the kitchen and turned on the computer.

After I wrote this I went straight back to bed and it was a quiet night, no coughing, no teething, no ventilator beeping. When I got up the next morning Neil had woken early, already seen my post, and was composing his reply [we're re-publishing it tomorrow – Ed.]. Pat, his night-sitter, had caught me in the kitchen in the middle of the night and tried to persuade me to go to bed. She must have told him I had been writing.

‘You’re naughty, you shouldn’t have let these ignorant people get to you. I shouldn’t have even told you the comments were there.’

At least I got some sleep.

This was one of these blog posts where the comments from family, friends and strangers across the world lifted me up, kept me going and got me through another day. A friend of mine suggested that I should try to get in touch with the Jeremy Vine show again, as this was just the sort of ‘crappy debate’ that might get motor neurone disease some airtime. I had no intention of doing so, but the thought of my friend promising to phone in as ‘Angry from Glasgow’ was enough to cheer me up.

In a way, the people making those comments on the Daily Mail article had done me a favour by becoming justified recipients of my anger. – Louise (2013)

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@breathingfilm tweeted this page. 2013-04-17 19:31:30 +0100
Louise can't sleep, but not because her husband's dying or her toddler crying... #Plattitude #MND #ALS http://www.iambreathingfilm.com/i_cant_sleep?recruiter_id=2
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