I’m pulled in two opposite directions.
One is towards my fellow PWME: women, especially, of my kind of age. Sometimes who’ve been ill as long as I have, some a little better, some a little worse than me. How fortunate I might seem to them: I have a partner, a baby and parents nearby who make caring for her possible. At weekends, on my good days, M., Sofia and I go out altogether to the park and Sofia plays on the swings and slides. And we must look, more or less, normal. Maybe even healthy people look on at us with envy. No-one would really notice that M does all the lifting and carrying and pushing, that we drive to the park instead of walking 10mins to get there, and that I spend a lot of time sitting on a bench, or in the sandpit where I can rest my back a little against the wall, which helps with the orthostatic intolerance. I probably just look slightly eccentric, getting down and sandy with the toddlers. I feel so lucky. By all accounts I should be single and childless after half a lifetime of reclusivity. Having Sofia and M is nothing short of a miracle.
But then, at that same playground, I might bump into a fellow mum from antenatal class with her neighbour. And I’m pulled towards self-pity. Both have toddlers of Sofia’s age. They’re my neighbours really; they live just around the corner. Except it doesn’t feel like that. Because they never call or text me to say “Hey, it’s stopped raining, shall we take the little ones to the park” on their days off work. Or “Could I leave Jeremy with you for an hour while I get my hair cut”. Why? Because the answer would be “Well, I’m not up to it today. But, hey, maybe next week, if it’s a good day ME-wise, when my mum comes, she can drive me and Sofia to the park and we could meet. Oh, and don’t mind me if I spend the whole time in the sandpit and would you mind lifting sofia in and out of the swings if I get too tired?”.
I even know which is their day off. I know I could call ahead of it and suggest meeting up with our babies. It’s not that anyone is purposefully excluding me. But I would have to negotiate an activity and a venue that I can manage. So we’re talking a sofa to stretch out on, ideally. Which means my place (tiny by their standards) or theirs (ie inviting myself and my toddler over). Then, once I’ve tied them down to the venue there’s a 50% chance, often higher, that I’ll end up cancelling at the last minute anyway because I’m having a crappier-than-average ME day. And they might even go along with it once. They’ll be flexible and understanding and reschedule and come over to my place if I’m housebound and even bring the biscuits because I can’t get to the shops. But unless they’re nuts or suckers for punishment, the following week they’ll hook up with the other mums, the ones who are more reliable and less demanding.
So I end up not phoning. Or trying it out once then retreating in defeat after numerous botched or rescheduled arrangements. There is a community of mums all around me, and potential playmates for Sofia. They seem really friendly and neighbourly. Every now and then we surface up to street level and rub shoulders with them. But most of the time they go about their mumsy business of shopping, swings and meeting up for coffee in blissful ignorance of me and Sofia in our lower ground floor flat.
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2 comments:
Sofamum, You are mirroring what this illness does, the exclusion thing, the self-preservation, so poignantly. And when it's to do with your wee child, it's so much more stabbing. I feel kind of angry with these other mums for not being more intuitive, not being more inclusive, but they probably leave it to you to get in touch, thinking that is the best way. I see my sister-in-law and the whirlwind she is part of with my nephews and her network of mothers, & though they are all knackered, they rise to the chaos in a way that we just can't. After a couple of hours with my nephews, I am a rag doll, that sad cliche of ME.I always have to stop playing midway, Auntie's tired, bla bla bla, and I feel quite guilty, I always say to them, let's just chat, chatting can be fun & I collapse on the couch. The youngest is not yet two, so he can't really chat! It's so bloody brave of you to have taken on motherhood and I don't mean that in a wishy washy Oprah, let's all praise ourselves way. What you are doing is brave. You are bound to have times of self-pity, which is probably more pity for your wee Sofia, but it sounds like she is a happy child, much loved, and that's what's important. Look at these mothers who cram their children's lives with activities from dusk til dawn, but barely know their names.
Thank you, nmj. It's funny but I could never play with or look after someone else's toddler because they would expect me to be normal. It's so different with your own child. Sofia doesn't know any different than a mum who's often lying down. She brings me her books to read. Or I give her words of encouragement with whatever her latest project is: lining up her animals in a row. Or we just cuddle up and watch CBeebies. Sometimes for hours.... It feels OK now because she has enough other stuff going on - going to nursery and getting out to toddler groups with my mum's help. Otherwise I'd worry about her becoming a sad couch potato following my example.
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