It’s hard for Caitlin to understand pain. Well, her and Logan both in all honesty, but her more so. When she first came to live with us I remember her being jabbed with 2 needles and not even knowing if it had happened. She genuinely asked me if they had done it yet. Or when she fell over, she might cry as a shock reaction, or even have a panic attack if it triggered a violent body memory. But she never could express, or recognise the pain.
Slowly through melodrama, lots of plasters and overreactions on her behalf, and lots of sensory input about soft touch. She’s started to recognise these things. So, when she was younger, and her mobility and muscular issues were still an unknown problem, she wasn’t able to alert anyone. However, she’s able to tell us about her aching muscles a little more now. Not always in time for us to be able to prevent her getting too bad, but significantly more than previously.
This weekend, she tested her climbing frame, she had a few falls, she was running back and forth, we have steep stairs. It all adds up. I look at it like someone on a diet – if you have had a fat slab of cheesecake, you can’t really get away with a sneaky glass of wine and a bar of chocolate, hips don’t lie! 😉 For her, each activity would be representative of food. Walking on the flat, whilst wearing supportive shoes and her orthotics is relatively low impact. And whilst she cannot walk on the flat indefinitely, it’s not the most taxing. Going up and down stairs is like a having something out if a box of chocolates, in moderation is ok. Rock climbing, soft play, the park… These things are all like the fat slab of cheesecake, you can technically have the other bits with them but “hips don’t lie” (in this case her muscles) and so she’s woken up today on the wrong end of activity binge.
This morning we have had tears, screams, drama. Today is going to be low activity, low impact. Wheelchair restricted when out, sofa/bath restricted at home. These are the days people don’t see. That people say I exaggerate for my “life of luxury”. I’d give up any of the things to not have to see her suffer, to watch her be included at the same level as her peers. But for today, I’ll just give her what she needs. Rest and nurture.