On Not Getting Better

The saddest thing is when my children say, "When your feet get better..."

The saddest part of my disability is not the physical pain that I endure with Complex Regional Pain Syndrome, nor is it the mental overload that this pain produces on a daily basis. The saddest thing is when my children say, "When your feet get better..." and then list the things that they clearly know they are missing out of when they are with me. Scootering, biking, walking the dog, walking to the park, driving, swimming in the pool: all things that I was capable of a year ago.

I have told them, and I will continue to tell them, that my feet might not get better, that some illnesses do not resolve, and that the medication that runs my life does not cure me, but only supports my daily living.

About a year ago my CRPS spread from one foot and ankle to both, with peripheral numbness that envelops both of my legs up to my waist. I have adjusted to the numbness, but the pain is persistent and changes moment-to-moment. Pins and needles and lack of sensation in the lower half of your body is low-key terrifying, because what if it continues to spread?

My children are already empathic little beings who are so careful with Mommy's feet. They are unashamed by my walker, it is a fun toy to them, something to stick stickers to. They know that our life is limited by my body, but we make the most of our time together and I have become an expert at parenting from bed.

It breaks my heart into a million pieces every time they mention a potential recovery that still exists in their mind, something long extinguished in me. I do not hold out hope that things will get better, only hope that they will not continue to get worse.

Luckily, their father is able bodied and active, they get to do these activities when they are with him, though he leaves tomorrow traveling and the kids will be with me for two whole weeks.

This is exciting and fun for us, but for me it is tinged with dread. What will my body do? How will it hold us back as we embark on solo parenting while disabled?

Like I've said before, things are not ok for me yet, though I did get good news yesterday about my application to NDIS, which hopefully will introduce new avenues for getting support. My condition has held stable since it worsened, I am continuing physiotherapy in the hopes of improving my mobility, I have an OT coming to meet with me next week. I work full time on managing my health. It is truly difficult, managing doctors and specialists and reports and labs and physio, OT, yesterday I met with a nutritionist. My NDIS application contained 47 pieces of evidence to support my disability, and I have now been officially recognised by bureaucracy as disabled. This gave me far more hope than any diagnosis or new treatment could.

I can deal with the guilt and shame that I feel about my body, I can deal with the dread and fear privately, and I guess now publicly. But how do I protect them from these dark parts of the human condition while they are still small?

I try to keep my kids as happy and normal as possible while also respecting the limitations of my body. I feel at war with myself most days, but I hide this from my children. I want them to see my strength and resilience so that they can learn from it, not that they are forced into it like I was by my dysfunctional childhood home life.

So I will keep softly telling them that I wish I could and that I will do everything I can. I will calmly let them know that Mommy's feet might not get better, that some things are out of our control, and that we have to make the best of what we have. They know that they are loved, and that they are safe, and I will do everything I can to protect them from the uncontrollable parts of the world.

I can cope with the sadness as it comes, and keep on trying to heal my body as much as is possible. But how do I keep this sadness from sinking into them? How do I keep their hope for their future alive while they watch their mother struggle with basic tasks? Asking for a friend.

LV
KS