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GUEST BLOG: EMMA- My significant loss and finding The Loss Project #shareyourstory

I have first-hand experience of feeling shattered, vulnerable, lost and exhausted after losing my mum under traumatic circumstances. Whether it’s classed as trauma in the clinical sense I have no idea, but it certainly feels like it was now, when I look back.

As a main carer for my terminally ill mum for over 3 years, I experienced unpredictable, distressing situations over a prolonged period of time. Knowing where to find support wasn’t obvious. Understanding I was a young carer in need of support wasn’t obvious – my mum was my priority and taking care of her was my number one. It was my duty as a loving daughter, the thought that it was my job didn’t cross my mind; if a parent is suffering and there is no affordable care out there, it’s just what you do as a daughter.

After my mum passed away, for a long time it felt like I had lost my purpose in life. I felt unmoved by the money driven world we live in. I was still reeling from the grief and loss of my mum, whilst also trying to makes sense of complex issues that had arisen from my mum’s end of life care. I felt isolated from my peers who would understandably struggle to relate, having followed the ‘normal’ path of university, starting a career and not having been through the experiences I had in my late teens and early 20s. There was so much to process over the 6 years from diagnosis. All the stages of grief that occurred from her diagnosis and prognosis, emergency call outs, the deterioration of her health over the years, realising she was leaving us bit by bit and, the hardest of all, trying to process the distressing memories of having to fight for my mum’s wishes with professionals when she entered into the End of Life Care system.

The End of Life Care system failed her, miserably. And it failed us as a family. I felt I was not taken seriously in this system as a young carer and an advocate for my mum, who’s breast cancer had spread to her brain. I had also experienced exceptional care and respect in the cancer care system mum was previously in, before she needed palliative care. I therefore knew the difference.

After mum died, I was relieved my mum was finally at peace, but was also left feeling angry, sad, guilty that I may have contributed to staff not listening to us as a family. I was left with all the upsetting memories of not only her illness, but also our experience and how we were treated in the End of Life Care system.

Furthermore, the person I was getting up to protect and support everyday had gone. I was well and truly stuck.

My own health suffered as a consequence. And when I say health, my whole body. I had not only lost mum, but also the constant rush of adrenaline in my body that was keeping me going in order to advocate for mum. My body crashed. I had insomnia for at least a year. My immune system was shot. I would pick up every infection, cold, virus and flu that was going, including swine flu. I was grieving and going through all the emotions of grief, but unsupported, unrecognised. My own GP didn’t see the connection of me caring for a terminally ill loved one and my body state. They just kept prescribing antibiotics and saying things like ‘girls of your age can suddenly get lots of UTIs’. I was hoping instead that they would review the test results each time and refer on appropriately to investigate further. I eventually asked to be referred to a specialist, a year after being prescribed countless courses of antibiotics with not many of the tests coming back positive to warrant the use of them. This was when a gynaecology consultant told me I had symptoms of endometriosis.

I am now reluctant to use terminology like ‘mental health’ and ‘physical health’ like they are two separate entities. It feels obvious to me they are one of the same thing and one isn’t more important than the other and more over not using ‘mental’ in public terminology may actually help to remove the stigma that brain health has. To me, it’s all connected and one effects the other. I feel that really showed in my body at that time.

My general health and wellbeing improved first and foremost when I found a community, a support network.

People often assume that close family and friends are that support network in challenging times, but often they are dealing with their own grief, in their own way and have their own needs and simply do not have the capacity to be that support for others.

Having that immediate safe space to go to where you can receive support, where you don’t have to go through hoops to get clinical support and without having to pay the cost of private healthcare, is so important.

In my case, I initially found solace in getting involved in charity work.

I read about a charity walk in my local paper and decided to take part. I knew exercise and green space would be good for me, but didn’t want to keep doing these things on my own in isolation. A walking event with like-minded people seemed like a good idea. Having thoroughly enjoyed the event and having felt the benefits of movement and connection, I subsequently became a member of the Breast Cancer Now (BCN) local volunteer group. That group of people became a critical source of support and care for me, something I have come to realise we all need in difficult times.

I later went on to take part in a couple of charity runs and even held my own fundraising events. These were dance themed, as my mum was an avid fan of Strictly Come Dancing. She would watch it to keep her spirits up whilst she was enduring her many courses of chemo. One of my events was a charity tea dance with the Strictly Come Dancing star, Camilla Dallerup. Camilla was mum’s favourite on the program. What a surreal, uplifting experience that was; to raise money with Camilla for a worthwhile cause and in my mum’s memory.

Charity work and helping others felt therapeutic to me. I was still able to do the thing I cared about most which was to help others going through similar experiences, but not be on the frontline of care where things still felt very raw.

Volunteering and supporting a charity were not only helping to create better outcomes for others, but was also an essential part of my grieving and healing process. I regard the local BCN group members as extended members of my family. They provided me with the connection and community I needed at a very difficult time.

Community and connection is key to working through grief. That is why I am so thrilled to be supporting The Loss Project and this fantastic initiative of bringing people together as a community. A project which aims to provide safe and welcoming spaces for people to explore grief and loss creatively.

This can be any kind of loss. Loss of loved ones, loss of livelihood, loss of self-esteem etc. It’s about having the conversation, using creativity to express feelings and emotions and encouraging a universal understanding that grief is a very natural and healthy response to loss. We are emotional beings after all, not robots. Grief is very necessary for the body. It helps us process what we experience and helps us to identify and address any low vibe feelings in order to grow from the experience and to not get stuck in a low vibe like sadness, resentment, remorse etc which can be debilitating over time.

Grief and feelings of loss will, at some point, be a part of life for all of us. The more we understand it and the more we recognise it is healthy and necessary to work with the grief process, not against it, the less intimidating it will feel and our lives will be better for it.

References: low vibe/high vibe terminology taken from Rising Vibe – The Rising Vibrational Scale).

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