Today I was at an appointment at the hairdresser, a front line worker was there at the same time, and at least three separate people mentioned that they had just finished a night shift and was doing another tonight. Now please don’t misunderstand I have enormous admiration and respect for the person and the job that they do, and I for one would be unable to do it. But it did make me reflect, you see last night was the first night that I have slept without being called by Lucy (or Clive as her brother calls her and its catching on quickly) this year. Yes, you read that correctly, I wasn’t called to attend to one of my kids during the night for the first time in 2020. I am not alone in this struggle, many many Carers live this life, yet we often fly under the radar. I wondered why this is, my conclusion? because we just get on with it. Not out of martyrdom but because that is just how we roll. When I speak to other Carers there is often a shared gallows humour (and believe me it gets dark) about the life that we live, almost like a secret club that you wouldn’t wish on your worst enemy, but there is also a huge amount of understanding and love in our group.

Ian and I have a little joke, before we or I head into a meeting about the kids, he gives me a hug and says “give em the old razzle dazzle babe”. Its reassuring that he has so much faith in me when quite often I don’t have any faith in myself. Its code for pull yourself together, deep breath, and get your fight on. You see when Jack was a baby I believed every single professional that I encountered, if I was told that support wasn’t available I went away with my tail between my legs, feeling guilty for daring to complain that I hadn’t slept or eaten a hot meal in months, that my hair was a mess, that my nails were shocking, I didn’t have a life outside of looking after my medically complex child, that I wanted to run away most days and nights. Sometimes the thoughts were even more serious, but I never thought that way for long. Anyway I have covered this in previous blogs, but long story short I met a wonderful person from Carers Wales and they made me aware that I was a Carer and that there was a world of support available and I never looked back.

Now just because support is out there, does not mean that support is always easy to navigate. This does not detract in any way shape or form from the wonderful work being undertaken by national government, local government, health and the third sector. However as a Carer fighting multiple battles, each request for support can feel like an uphill battle.

When Jack and Lucy were little I began to read the various pieces of legislation that were related to disability and caring, I became a bit of a Billy Flynn in social care and equality. Through my journey I had a total change of career and now I am the lead officer for Carers in a local government , so I know first hand that the people that I work with across the board do so with the very best of intentions, none of us go to work to do a bad job. However the press would suggest other (thats a different rant, sorry blog post). However some of the systems are set up in such a complicated way that it makes it difficult for paid workers and Carers alike). A recent example of this? two separate meetings with two separate teams around Clive, in total I was in online meetings for three hours, negotiating, pulling pieces of relevant legislation out of my head, verbal fencing until they agreed to do as I asked, what Clive my baby needed. But we got there. After each meeting I was completely emotionally drained.

Carers do this all the time. But they do it on top of their caring role, whilst being completely and utterly exhausted. To put it into some context, I recently posted on social media about a day that I flew solo without my wingman. That day I

  • Cleaned up 11 poops and 1 vomit
  • Delivered 4 showers and had one myself
  • Cooked 5 different things that were just picked at
  • Diverted numerous meltdowns
  • Did 12 loads of washing
  • Administered 9 different medications 6 times
  • Explained why we don’t call our pubic hair our muffler.

This is quite a typical day, And again please dont think I am professing to be a hero, millions of people around the world also live this life. Just this morning I went into the wetroom and noticed that the toilet looked like the toilet off Trainspotting, after a period of momentary panic I deduced that Clive had thrown her hot chocolate down there.

I suppose the point that I am making, is that nearly all Carers perform the Razzle Dazzle daily. We do things for our loved ones, we fight for them, and above all else we love them. If you look at the photograph with this blog you will see two images. One is me wearing make up that covers the exhaustion, its my public facing persona. The second image is the completely exhausted, bare faced Carer, devoid of make up, sitting on her husbands lap (no wonder the poor sod is losing his leg) after a few glasses of wine and a few tears after a thoroughly exhausting day. Yet when people ,messaged me that night I told them I was great, cracked jokes, even gave advice and made them feel better. The old Razzle Dazzle in action.

I am not naive enough to think that I can change the world alone, but I hope that I do make a small difference. One performance at a time.