I scared myself last week…like really scared…at 3am, the time for all sensible thinking! I had endured a day of back pain that came out of nowhere (not exactly true but I hadn’t done anything stupid) and packed a punch. Bed brought little relief with stabs in every wiggle or turn. In the end I rose to walk the house hoping for ease…then returned to attempt to sleep. One change of position and the pain stopped….stopped. All I could think was how could I push a wheelchair from a wheelchair. I had to get back up and walk to reassure myself that I could. I have never been so close to calling an ambulance…for me.

So began a very challenging week. The pain was barely manageable and the restricted movement meant I couldn’t do my job. No dressing, hoisting, changing, caring for my girl. No driving. I have really struggled with it…still do. It’s great to be the independent type…except when it’s not. I have had to ask for and accept help. Hard. Don’t get me wrong I am overwhelmingly appreciative of all of the help I have received. Dinners, many support workers shifts, coffee, lifts to appointments, drivers to pick up my girl, drop offs and pick ups for my boy, cleaning….truly amazing. But I still think I should always be able to do all of that myself.

The thing I have been mulling over (as I sit and sit some more) about the human condition is there is hard stuff and associated fears. Hopefully not constantly but it’s around. I have been contemplating how I can now make this challenging experience part of my story without it defining me. I have always had a “funny back”. (Language was of importance in my family as a kid so even with a congenital deformity I was discouraged away from the term “bad back” as “everyone has one of those”.) The physical strain of caring for a child with high needs is great. I still don’t want to be the carer with the bad back but I can’t ignore it and I realise I am different due to my recent experience. Not necessarily in a good or bad way but different. Lately I have been admiring a friend for the way she is incorporating her challenges into her own story. She may or may not agree with me, and I know it hasn’t been easy but she seems to be striking the balance well. The experience doesn’t define her but she acknowledges the way she has changed…and grown. I also recognise that for others melding a difficult time into their story is very distressing.

For me, at the moment, I think I am getting there. Changing my perception of this difficult time has made an enormous amount of difference. I still have pain today, much more so than yesterday and that will ebb and flow. There is still fear a horrible flare will recur and still fear that I won’t be able to do everything a want to do as a parent and a carer and as a person. That I won’t be able to look after myself much less my family. But I have managed to get my head in a different space to make it ok. It’s part of me, part of my story. It is a work in progress mind you…there is still editing to be done.

One of the things I admire about my daughter is that she seems to do that seamlessly. Well she seems to because I don’t really know how much of a challenge it is in her head. But there is something about her that enables this kid to incorporate difficult experiences into her story without letting them define her and without caring about other peoples perceptions. She just does her thing…and that’s pretty cool. That’s my aim…to manage the pain and fear as she does. But don’t expect superwoman. There will still be tears and swearing and whingeing to whoever will listen cos man it hurts.


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