For me, the worst thing about living with a disability is not the pain, the exhaustion or all the things you miss out on. All of those things can be more horrendous than I can put into words, but what is completely devastating is that our responsibilities; what we expect of ourselves and what others expect of us are based on the assumption of good health. We all have the same physical and moral obligations to make sure our kids have hot meals, clean clothes and a safe environment to grow and learn in. We love our families the same, and there is the same expectation that we will step up when we're needed. What's not the same is our ability to do any of those things. That's completely restricted. On our bad days we have to choose between washing up or doing laundry, when we've completely run out of both clean dishes and clean clothes. So we choose, and we push, and we do what we have to at a huge personal cost because we need to. We have pain and suffering from housework, from playing with our kids, from picking them up and giving them a cuddle when they hurt themselves. And we push and we push and we push ourselves right to the very limits of our health because we have to. Everyday we walk a knife edge between what people need of us and how much damage we could do to our bodies by meeting those needs. And those responsibilities are what keep us up at night, what we cry over most, they are the most completely devastating thing about being a Mum with a chronic condition.
When we say we're struggling, what we're saying is that our health is showing the cracks that we're doing too much, that we could cause real and lasting (risking permanent) damage to our health and that we're already way behind on the most basic essentials for what needs done. And for us the basic essentials are not a clean house, home cooked meals and occupied children. For us the basic essentials means managing to get to the toilet ourselves, even if it takes us 10 minutes to work up to it, and 10 minutes to climb the stairs and half an hour to recover. The basic essentials means crawling to the kitchen to get our children juice and cereal for tea. And every day we struggle on to do the basics we further restrict what we can do over the next few days, weeks and months. Because every time we push when our bodies tell us to sit the fuck down our health deteriorates further. The rules of carrying on and doing what needs doing no matter what don't apply to us. They absolutely can't. And when our children or others we love need us, need us to do more than the basics that are already too much, we can't. And the morals that say family always comes first and that you are there for your friends when they need you, the morals that we feel with all our hearts and are aware of with every fibre of our being, that fill us with guilt and shame and hurt over the fact that we can't help those we love when they need us; those morals can only shape our behaviour if we ignore a much greater duty that we have. The duty to be as healthy as we possibly can so we can feed our children tomorrow.
