One of the hardest things about being a parent with a chronic illness is the guilt you constantly feel. Guilt for not being present enough, for missing moments big and small, for never feeling quite ‘enough’. As someone who has developed this illness relatively recently, I also have a clear ‘before and after’ picture in my head of parenting. Pre-illness we would go on day trips, visit farms and woods, walk for miles. I would take the kids out on my own without even thinking about it, driving for a couple of hours at a time to visit old friends, or maybe a trip to London. I used to go jogging with one of the kids in a running buggy ffs. Looking back we just did so much stuff. And it was fun. Ok, challenging at times – young kids are. And exhausting. Neither were good sleepers so that came with it’s own challenges. But taking the kids to a play group, or swimming, or to the park, wasn’t even a thing. I just did it.
Fast forward to life post-illness. I’ve blogged previously about the course my illness took, how it started off with me barely able to leave the house or even form a coherent sentence but slowly, slowly, things improved. Improved to the point where I can enjoy some of those trips again with the kids, as long as I factor in rest breaks and flexibility as to how much I am able to do on the day. I still have periods where I ‘crash’ and need total rest. But they are definitely fewer and I seem to recover quickly. And now, every time I am able to do one of the things I used to take for granted, I am extraordinary grateful that my body is allowing me to do this thing, this simple thing that most parents are doing every single day with their kids. I never dare do it alone though – so far, I always rely on my husband driving us, being there if I need to find a quiet corner, making sure I don’t push myself too hard.
Yesterday, however, I managed to achieve sometime I haven’t been able to in over 2 and a half years. I took my oldest child out, on my own, for almost the whole day. We went to the local safari park, just the two of us. I could actually cry at the thought of how long it’s been since I have been able to do something like that and we had the best time, just hanging out together. I drove for the longest time since I got sick (I usually stick to under 15 minutes), I walked for ages, I coped with the noise and crowds – it almost felt like the old me.

It is the end of the summer holidays today and tomorrow is the start of Year 1 for my oldest. It’s a stark reminder of how quickly time moves and whilst I will never get the past few years back, I can at least look forward to more of these moments to feel grateful even if they are few and far between. And who knows, maybe this is the start of some real improvements where I can feel more confident that my health will allow me to some of the things I used to take for granted. I don’t see myself running a 5k with a buggy any time soon but I’ll be happy with the ability to leave the house on my own with the kids for a while, and feeling just a bit like the ‘old’ me.