When disability mellows.

For those of you who aren’t aware, I’ve got a nifty little chronic pain/disability problem called SPD – symphasis pubis disorder. It’s also known as pelvic girdle pain. Many women, I think it’s one out of four, will have minor SPD during pregnancy. It’s really very common.

I had a severe sort, resulting in spending about a year and a half in a wheelchair. Eventually I moved on to full time crutches. Now I’m lucky enough to have (mostly) moved away from crutches and would guess most people I associate with have no idea that I live in chronic pain and have to adapt my daily life in order to carry on.

I don’t do as much around the house. I don’t often help with night wakings, because sleep is when your brain makes what I like to think of as natural morphine. So no sleep, less natural immunity/protection against pain. I usually only carry backpacks to evenly distribute weight on my body, and these are hiking packs with chest and waist supports.

My SPD has greatly improved since pregnancy, but four and a half years on I’m still left with daily pain, joint erosion, and decreased mobility. I’ve got a limit to how much physical activity I can do, and what type, otherwise I pay the price in the days to follow.

I’m very, very fortunate to have moved out of thinking I would need a wheelchair for life. Now I don’t really countenance that as an option. Though there are days, days like today, that a wheelchair would help. You know, if our entire floor wasn’t littered with Lego, Playmobil vet scenes, and art projects on the go.

Sometimes I do something klutzy and it triggers a relapse – a fall, moving in an awkward way, carrying too much stuff, etc. Sometime it’s hormonal. But the key feature is that whenever I have a relapse bad enough that I can’t walk without extreme pain (maybe once every three months or so?) I am filled with deep terror.

The last time it happened I really tried to stay with it. I also reminded myself that I had felt the pain before. I’d had treatment, time, and rest and moved through it. I can spend weeks not really noticing minor pains or letting it impact too much on daily life. There was a time I couldn’t bear any weight on my right foot, even while using crutches, and if I reflect back to that time it is easy to see how far I have come.

This time, I don’t know what has sparked a relapse. I just know it hurts.

But the very interesting thing is that for the first time, there is no accompanying terror. I resisted allowing this to become my new normal for a long time. I don’t know if I’ve made peace with it yet, but I think I’m understanding that there’s no point in resisting: this is my life now. This is how my body works, this is how things have changed for me, and it’s been this way for long enough that it’s hard to remember my old normal now.

The terror is absent. So is the guilt. I had to cancel fun plans today, but I was too worried about what pushing through would mean. I pushed through on the weekend, and it’s resulted in it being Tuesday and me still being in a decent amount of pain. So today we stayed home, we read aloud, we released the final butterflies. It was calm and peaceful and sort of a relief to relax into the pain, though I still worry about my children growing up with a mother who has to periodically ask them not to sit on her lap, hang on her, and that she needs a rest before she can get them more of whatever it is they require.

But these are moments. This moment is not as painful as some, though it is stretching for longer than usual. I’ve done what I can. I have an appointment for Bowen therapy later this week (I cannot recommend this enough – and if you google, you may be as skeptical of this weirdo sounding treatment as I was. But it works! I’ve tried everything, and this is the only thing that has helped.), I took it easy today, tomorrow we will go to a friend’s house and hopefully I can spend most of the time sitting on her couch!

Little things worry me. If we need to get to the pharmacy I don’t think I can do it, if my child needs that possibly infected odd spot on their leg to get seen by the doctor I’ll do it, but it will hurt.

Regardless, we carry on.

Into our new normals.

My new normal is so good, most of the time, that today I’ve forgotten to use my crutches. They are not a part of my daily life anymore, though they are a welcome support when I need them. Not using them has hurt me, yet still I forgot again and again to use them. I was so worried, even a year ago, about how disabling my condition was.

Now I feel like I’ve moved into phrase three. Phase one was life before pregnancy, before being hit by a motorbike while crossing the street at five weeks pregnant. Phase two was the pain, the unutterable and constant pain, even when it became more manageable. It was also the terror that each relapse brought – would I need a wheelchair forever? Need codeine every day?

Phase three is gentler. I don’t know that I’ll improve much more than I am now, and much effort will need to be made to make sure I don’t decline any sooner than I would from normal aging. But in phase three it’s a surprise to need crutches, but an acceptance that hey, they are there, I need support, may as well embrace it. My children are older, so much of the heartbreak of not being able to do much for them in their first months is over. If you look at pictures of us then, I’m usually always lying down. Maybe in my wheelchair.

If you look at pictures of us now, I’m usually always happy. Naked feet in cool stream, sitting on a log in the woods with my family. More often than not, I’m not in the picture. We are so busy exploring and doing and being, and the pictures that do exist are of my children. But I’m there, behind the camera, walking along and (mostly) feeling fine.


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