Monthly Archives: October 2014

Woes be gone!


I get so fed up sometimes. Bored by a Monday to Friday routine that revolves around meals and personal needs. Before I got this condition, I’d spend the minimum amount of time on myself getting up and out in the morning. Now it takes two and a half hours. Soon it’s time for lunch and that takes another two. So by three o’clock when the kids get home I’ve already spent three and a half hours eating! It’s insane, but a fact of my life now that I need to accept. Sometimes on a bright autumn morning I find myself longing for a spontaneous walk in the crisp air. I then console myself with this thought; I see myself as a working mum and imagine if it was so, I wouldn’t have the freedom to go outside whenever I fancied. Same for the school run which I miss terribly, “you’re far too busy for that”, I tell myself. I suppose there’s some truth in it for me. I’m working at being the best mum I can with my obstacles. Being able to welcome them home with a smile is powerful.
I’m fed up too of being tired all the time. It seems I’m constantly in a sleepy state that I cant shake off. It’s not like I can go for a run like the world and it’s mother are doing these days. No, there isn’t any escape for me. I’m doomed to my routine.
My eyes get so sore from staring at a screen all day. By the time Jonnie gets home they’re generally too sore to talk to him and oh I’m eating again!
I just wish for a night off. A break from all of these challenges. Everyone needs a break from their woes. But me, never.


Like a Prayer


I felt tiny wirey legs scuttle across my neck earlier. My carers looked as if they’d seen something repulsive. I was still waiting for an answer about the neck tickler when the tissue emerged hoping to squash the hairy little fella into oblivion. Poor little spider, “little? “, he was frickin massivo, I was told. Anyway, spiders are lucky for me and if a big one treaded on me well that’s even luckier.
I could do with a bit of luck in the chest area overall as I ‘ve been experiencing difficulty with my breath. Nothing major though but its a change and from where I’m sitting, change is frightening. I’ve spent a lot of days of endless crying over my mortality and furious with life for inflicting this on me. One afternoon I broke down seeing a mum loading shopping in her car and kids inside, just like I used to do, its heartbreaking what I and so many other mums in my situation have been denied.
I find it so hard to write when I’m down. This week I feel much better especially since Lucys’ visit and wonderful laughter crept back into the house. Lucys’ a tonic for the soul and I love when she’s here. I feel close to my lovely Dad when she’s around as she shares the same quirky sense of humour as he had.
I want also to praise Jonnie because he’s so amazing. I hear him getting up early each morning to meditate [he’s been doing that for years ]. Then coaxing kids from their cosy beds and getting them out the door on time. At weekends he rarely goes out as we’ve less help and it’s full on with the kids. Rowan does rugby on Saturday mornings now and Kitty’s started soccer. They look great in all the gear and the sound of them clunking into my bedroom on wooden floorboards to kiss me goodbye is adorable.
Every weekend Jonnie cooks a roast on Sundays. Roast spuds, mashed, veggies, gravy, the works! Often, a freshly baked cake too. Then there’s the tidy up as anyone engaged in this activity on a regular basis knows. Every evening, Jonnie gets me ready for bed and does things no husband should ever have to do for his wife. My love for him has grown deeper than I ever could imagined. I respect him so much and appreciate everything he does to keep our family going as normally as possible. Our kids are happy and have lots of interests and thankfully good at doing their homework every afternoon.
Jonnie often reminds me of the importance of meditation in his life. Without the practice of being still and knowing that all will be ok, our family might not have made it to here. I don’t practice regular meditation any more. I did it for years before I got Mnd. Perhaps it’s the fact that I’m sitting down constantly and being still whether I like it or not, my life feels like some kind of meditation or prayer.