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Friday, 1 November 2013

6 years in

I'm full of cold. Again. And I'm so damn tired all of the time.

I spent 5 years pretending that  I could carry on, unchanged. But this year the cracks began to show. I think that moving house was the catalyst: we now live in a house that we enjoy, with the space and quiet to relax in. That has helped in that I have stopped being a drill sergeant forcing us to go out and 'do stuff' every weekend. We can simply walk round the garden and give Seth as much fresh air as he needs, and give him physiotherapy at the same time. However, I've stopped wanting to do anything: the act of going out is even more energy than I can manage.

We have babysitting options. We stopped using our Direct Payments to go out for a couple of hours once a week, and instead store it up to do something all day once a month. We were finding that we were forcing ourselves to go out of an evening when we were too tired and wanted nothing more than to curl up in front of the telly.

We've got the Babysitting service - a bank of childminders who offer their service to sit for your special needs child in the evening. Out of 30 or more childminders, only one felt they had the necessary experience to babysit for Seth. But she is fab so no worries there. To book her I simply have to email the service with the date I need. They then email her to ask if she is available and, once confirmed, we can then sort out our evening plans.

We've even had friends offer to sit with Seth if we need to get out one evening.

That all sounds really simple while I'm typing it. And yet it feels just too much effort. And maybe right now that isn't such a terrible thing. In the 5 years after Seth was born, I went back to work (albeit I dropped to part time after 6 months), I was an active member of the local residents association, I attempted to rekindle my massage business and I joined a roller derby team, volunteering with their marketing and fundraising, as well as trying to learn to skate. Should I really be surprised that I can't find the energy to do any of that now?

I thought that things would get easier as Seth got older but in a lot of ways it actually feels harder. I told a friend recently that it feels unrelenting - there is no break and even trying to get that break involves effort so isn't so much a break. I don't want to have to organise my break, I want someone to come along and just hand it to me. Last week I had an evening out with 'the disabled mums'. A group of friends I gained when attending special needs pre-school activities. We go out for a meal every couple of months and it's really my turn to organise the next one but it feels lovely and indulgent to just be told where to go and what time and all I have to do is turn up. & I know I've posted about this before but we all spend the whole evening laughing, mostly at ourselves. They are my life line and have kept my sanity for the last couple of years. If Craig had something similar I don't think he would have been signed off work with stress this past month.

Where is this rambling, morose post going? I suppose that while I know it's okay to just stop, to not try to take on everything and focus on home, I don't seem to be feeling any better by doing so. I'm just as tired, struggle to get up each morning, go to bed weary. It isn't any easier trying to organise going out as a family because it's a roll of a dice whether Seth will be happy, in which case we have a lovely time, or whether he complains, in which case it's just horrible. I think I understand him and then I realise that I've gained nothing. We've achieved a lot, but that means we just face the next challenge. Brings me back to the unrelenting comment again. Seth turns 6 next month and I suppose I thought that things would be different by now but in so many ways they've really stayed the same.