My Experience of Burnout

My life since Elijah’s brain damage has had many ups and downs. Looking back over my life, there have been a number of times where I have burnt out, my most recent experience of this was a year ago.

In September 2021 we went on holiday to Center Parcs. Preparing for a holiday with children can be stressful at the best of times, but it takes a great deal of people and organization to take a child such as Elijah away.

His complex needs mean he needs constant round the clock care by a number of professionals and there is always a lot of equipment to pack. On this trip, I went ahead of Elijah to get everything ready and he came down on the following day.

We all love Center Parcs, it’s so beautiful and it’s Elijah’s happy place. The first day was great, he went swimming whilst I chilled, and we went for a bike ride. We stopped for coffee and food and returned to our lodge in the afternoon. Elijah then went to bed and watched a movie.

As the evening went on, he did not seem great. The nurse woke me at 6am the next morning telling me he was not well, we called an ambulance and he was taken to Bedford A&E.

It all went downhill from there. When I arrived at the hospital I could see he was very unwell. We have been through this many times before, but this was different. It turned into eight weeks of stress, frustration, emotional overwhelm and worry.

Looking back now, I wonder how I got through it.

Given we were a couple of hours from our usual hospital, we had no choice but to send him to the local one where Elijah ended up in intensive care before being transferred to a second hospital. Back then Covid restrictions were still tight and they made a fuss about having the carers there so we all had to return to Center Parcs.

Elijah was heavily sedated and essentially asleep the whole time, so after debating where I would be most useful, I went back home to sort out the team. However, his condition then deteriorated and became critical. The doctors did not know if he was going to pull through so I immediately travelled back up with one of the nurses.

It was such a shock to see him so poorly. His eyes had swollen and he looked so unwell. We booked into a Holiday Inn nearby and things became more and more stressful from there.

It was frustrating talking to nurses and specialists who didn’t know us, his condition or history. I remember wishing I had moved him back to Bristol right away.

I was so worried about his eyes and kept telling the staff that he needed to see a specialist, but they kept saying no one was around.

I had to repeat myself over and over. This was nothing new, many carers speak about fighting to be heard.  So I took photos every day as proof that his eyes were getting worse. I was eventually able to show a doctor on one of the ward rounds, who immediately acted upon it. Elijah saw an Optomolgist and had a treatment plan in place.

I hear this a lot from parent carers. You have to persevere and reinforce the message. I kept saying, ‘I am concerned about Elijah’s eye’s’, over and over until someone listened to me. 

His eyes started to look better and by the end of the second week he was turning a corner. We were keen to get back to Bristol but the hospital was very full at that time so he had to stay where he was.

By the third week, I was feeling stressed about having to pay for the accommodation to be near the hospital. We had moved into an Air BnB as the parent accommodation at the hospital did not suit my needs. I have physical disabilities because of Apert Syndrome and their accommodation was a fair walk away with no parking and had no ensuite bathroom.

Health and social care had refused to pay for any accommodation at all, so the cost of the Air BnB was coming out of Elijah’s money.

The stress I was under was enormous.

There was the emotional trauma and stress of my child being so ill, and then all the frustrations dealing with staff who did not know us or Elijah’s condition and history and then on top of that the financial costs of it all.

In the end, Elijah was in intensive care for seven weeks and I was physically, mentally, and emotionally exhausted.

This is burn out.

Thankfully I had support around me, from Elijah’s team and my own coach, so I was able to recognize what was going on for me and recover from this period.

Yet, in worst case scenarios we may think it’s not worth carrying on. Back in 2012 I walked into my GPs office and told them I wanted to take my life. I did not want to carry one and could not see a way through it.

The GP was not that helpful but the important thing was, I asked for help.

Looking back, the signs of burnout were there but I did not know what was going on at the time. I had been through a really stressful period, I felt that I was not being listened to, I had problems with social care and was feeling persecuted.

Knowing what I know now, I would have turned straight to my coach. Coaching changed everything for me. I understand myself, how my brain works when stressful situations happen and how to find solutions. I also know what’s going on in my head so am able to be with it rather than react to it.

I would love to know  your story of Burn out? How do you cope when this happens in your life? What support do you have?

Our 6 week coaching for Carers helps with symptoms of burnout, if you would like to try out one of our taster sessions then you can register here.