In 2013 (I was 24 years old) I was diagnosed with a rare condition called Aggressive Fibromatosis which is caused by a malfunction in my genome and was 'switched on' by the pregnancy hormones that were raging through my body at the time. Between 2013 and 2019 I battled 3 tumours, all in my right shoulder/ upper right arm and all extremely aggressive with one ending up 16cm in diameter (thats the size of a small melon). Over those 6/7 years (after my son, Niall, was born) I undertook six months of chemotherapy, a 6 week intensive course of radiotherapy, four months of tamoxifen, attended a phase one drug trial, tried just about every pain killer going including a ketamine infusion (desperate times, desperate measures). I had three major surgeries; the first to remove the biggest tumour, the second was to install a spinal cord stimulator to help me with the pain and the third was the amputation of my right arm at the shoulder. To top it all, in 2016, I was also diagnosed as a lactose intolerant coeliac.
Just after my amputation, on 2019, I woke one night to my husband fitting and unconscious. He was slipping into a diabetic coma. Thankfully, the paramedics managed to bring him around (twice) and eventhough they never got to the bottom of it, I have a sneaking suspicion that years of stress final came to a head and manifested with serious repercussions.
We are a neurodiverse household, which is so complex in its triggers/ presentations that I'm very sure it'll take a life time to properly understand but, what I do know is anxiety lies at its heart. When anxiety is high, sensory processing and emotion go into over drive leading to anything from complete shutdown, self harm, anger, hyperactivity, inability to sleep, food issues and meltdowns with huge tendancies towards controlling behaviour.
During the first Covid lockdown (2020), everything came to dramatic head. Niall's anxiety was through the roof; all of his ASD traits intensified 10 fold. He couldn't concentrate on anything. A single tiny mistake became an extreme point of fixation and he began hitting himself as punishment. He didn't want to let me out of his sight, his energy went crazy levels but perhaps the most difficult thing was his need to control everything from the people he loved, down to the food he ate... cue the beige diet!
I also manifested an anxiety of sorts but mine developed as a severe pain in my chest. For several months I suffered major heart burn symptoms, I struggled to breathe, talk and swallow food properly, experiencing really nasty reflux and lack of sleep. At the time, I was petrified that it may be a new tumour and although they found a small lump, it hasn't grown at all since so I rarely give thought to it anymore. When my scan results came back and the initial anxiety reduced, I looked at my symptoms through a different lens and realised it was realistically caused by a mixture of severe anxiety, poor gut health from all the drugs I'd been treated with and exacerbated by a diet of mostly fruit and black coffee.
By August 2020, we were in need of a revolution so I began researching... consuming knowledge about mindfulness, fitness and nutrition on deeper levels than I'd ever looked at it before to include the vagus nerve, gut health, yoga, journalling (thanks to my very good friend Lynsey), nature... infact anything and everything that could offer a string to our wellness bow. I realised then that we needed to build individual toolkits unique to our own lives because we are all so different. Not only that, our bodies change daily depending on sleep, nutrition, hormone fluctuations, experiences, weather, exercise so what works for a particular situation one day, wont necessarily work on another.
2021 was the first whole year since Niall was born that I wasn't going in and out of hospital, infact just one scan and follow up consultation, per year, sees me right these days. It was a time I didn't think I'd see, to be honest, but the renewed confidence I experienced in my hospital freedom has allowed me to begin building towards positive things both for me and my family. I want to become the best version of me that I can possibly be, both mentally and physically and I want Niall to know exactly who he is too, inside and out so that when life becomes overwleming and difficult, he is more able to cope.
In January 2024, we took Niall out of main stream education. His stresses, anger and mental health were not only heart breaking for me to feel and witness but were also having a hugely negaive impact on our whole household. He's referred to school as 'the prison' since he was six and, despite the incredible warmth and dedication of his teachers, his opinion and emotion towards it have never changed. I want to build him up, to empower him, to help him navigate life with strong foundations so that he has a fighting chance to succeed in a happy and healthy life. Its utterly exhausting but undoubtedly the best thing we've ever done.
I started Foraged Hope as a way of beaming a shaft of light into others peoples endless storms by snapping photos, inspirations, tiny fragments of joy and beauty which I post for others to borrow in the hope it might break the gloom and conjure a smile but it has also become a life line for me. Without foraging hope, reframing, searching for those tiny snippets of magic, I doubt I would still be here.
Just after my amputation, on 2019, I woke one night to my husband fitting and unconscious. He was slipping into a diabetic coma. Thankfully, the paramedics managed to bring him around (twice) and eventhough they never got to the bottom of it, I have a sneaking suspicion that years of stress final came to a head and manifested with serious repercussions.
We are a neurodiverse household, which is so complex in its triggers/ presentations that I'm very sure it'll take a life time to properly understand but, what I do know is anxiety lies at its heart. When anxiety is high, sensory processing and emotion go into over drive leading to anything from complete shutdown, self harm, anger, hyperactivity, inability to sleep, food issues and meltdowns with huge tendancies towards controlling behaviour.
During the first Covid lockdown (2020), everything came to dramatic head. Niall's anxiety was through the roof; all of his ASD traits intensified 10 fold. He couldn't concentrate on anything. A single tiny mistake became an extreme point of fixation and he began hitting himself as punishment. He didn't want to let me out of his sight, his energy went crazy levels but perhaps the most difficult thing was his need to control everything from the people he loved, down to the food he ate... cue the beige diet!
I also manifested an anxiety of sorts but mine developed as a severe pain in my chest. For several months I suffered major heart burn symptoms, I struggled to breathe, talk and swallow food properly, experiencing really nasty reflux and lack of sleep. At the time, I was petrified that it may be a new tumour and although they found a small lump, it hasn't grown at all since so I rarely give thought to it anymore. When my scan results came back and the initial anxiety reduced, I looked at my symptoms through a different lens and realised it was realistically caused by a mixture of severe anxiety, poor gut health from all the drugs I'd been treated with and exacerbated by a diet of mostly fruit and black coffee.
By August 2020, we were in need of a revolution so I began researching... consuming knowledge about mindfulness, fitness and nutrition on deeper levels than I'd ever looked at it before to include the vagus nerve, gut health, yoga, journalling (thanks to my very good friend Lynsey), nature... infact anything and everything that could offer a string to our wellness bow. I realised then that we needed to build individual toolkits unique to our own lives because we are all so different. Not only that, our bodies change daily depending on sleep, nutrition, hormone fluctuations, experiences, weather, exercise so what works for a particular situation one day, wont necessarily work on another.
2021 was the first whole year since Niall was born that I wasn't going in and out of hospital, infact just one scan and follow up consultation, per year, sees me right these days. It was a time I didn't think I'd see, to be honest, but the renewed confidence I experienced in my hospital freedom has allowed me to begin building towards positive things both for me and my family. I want to become the best version of me that I can possibly be, both mentally and physically and I want Niall to know exactly who he is too, inside and out so that when life becomes overwleming and difficult, he is more able to cope.
In January 2024, we took Niall out of main stream education. His stresses, anger and mental health were not only heart breaking for me to feel and witness but were also having a hugely negaive impact on our whole household. He's referred to school as 'the prison' since he was six and, despite the incredible warmth and dedication of his teachers, his opinion and emotion towards it have never changed. I want to build him up, to empower him, to help him navigate life with strong foundations so that he has a fighting chance to succeed in a happy and healthy life. Its utterly exhausting but undoubtedly the best thing we've ever done.
I started Foraged Hope as a way of beaming a shaft of light into others peoples endless storms by snapping photos, inspirations, tiny fragments of joy and beauty which I post for others to borrow in the hope it might break the gloom and conjure a smile but it has also become a life line for me. Without foraging hope, reframing, searching for those tiny snippets of magic, I doubt I would still be here.
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