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Abi’s Inspiring Interview: Complex Regional Pain Syndrome (CRPS), Fibromyalgia, Embracing Mobility Aids, and Finding New (Accessible) Dreams.

Authors Note: A Message of gratitude from Ellie, Creator and Author of A Note of Hope.

"I am very happy to share Abi’s story as a part of the ‘A Note of Hope’ project. Abi discovered our project on TikTok and reached out to share her chronic illness journey, which began when she was just seven years old. She filled out our standard questionnaire, and I hope I have been able to do her story justice!


There were so many aspects of Abi’s story I found inspiring and wanted to highlight. Firstly, her embrace of mobility aids, especially as a young person dealing with an invisible health condition. Additionally, how her health challenges prevented her from following her lifelong dream of becoming a paramedic. This could easily have led to her giving up, but instead she found a new career path where she has been able to thrive and balance her health.


If you are in a similar position to Abi, I hope you find her story as empowering and inspirational as I did. I am grateful for the opportunity to share her story as part of my project. Thank you Abi!” - Ellie Howe, creator and author of 'A Note of Hope.'

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A selfie of a woman and a man, smiling at the camera.
A Note of Hope Inspiring Interviewee Abi (23, UK).
"Hi, I'm Abi. I'm 23 years old and work as a Teaching Assistant at a primary school. I live with multiple health conditions including CPRS, Fibromyalgia, ME/CFS, and many more..."

As a teaching assistant at a primary school, Abi's days are spent nurturing young minds. However, her life has been marked by a series of debilitating chronic illnesses that began in her own childhood. 


Abi's health struggles began at the age of seven after she suffered a severe sprain from a school injury, which caused damage to her ligaments and tendons, leading to 18 months of pain and uncertainty.


"The doctors didn't know what was wrong," Abi recalls. "I had to wear a walking cast for three weeks and couldn't bear weight on that leg for 18 months."


This prolonged immobilisation caused a 50% loss of muscle mass, which meant Abi had to relearn how to walk and she was diagnosed with Complex Regional Pain Syndrome (CRPS). CRPS is a chronic pain condition that typically affects one limb, such as the arm, leg, hand, or foot (although it can extend throughout multiple body parts), usually after an injury or trauma. It is known for causing intense and prolonged pain and noticeable skin colour and temperature changes. Additionally, individuals with CRPS often experience heightened sensitivity to touch, making even the lightest contact excruciating.


After this incident, Abi's health was never the same, and she continued to deal with persistent pain throughout her childhood and teenage years. At sixteen, Abi underwent an intensive physiotherapy program that offered a brief respite from her symptoms. However, the relief was short-lived as the pain soon returned and began spreading to new areas—first, her knees, then her hips, and eventually becoming more widespread, leading to a diagnosis of fibromyalgia in 2017.


Fibromyalgia is a complex and chronic condition that is characterised by widespread musculoskeletal pain, tenderness, and stiffness. In addition to these physical symptoms, individuals with fibromyalgia often experience a wide range of other symptoms, including chronic fatigue, sleep disturbances, and cognitive difficulties, such as memory and concentration issues.

"After the fibro started, everything else went downhill, and so came all my other issues..."

Following her diagnosis of fibromyalgia, Abi's health journey took another challenging turn when she received a further diagnosis of Myalgic Encephalomyelitis (M.E.), otherwise known as Chronic Fatigue Syndrome (CFS), a condition characterised by extreme fatigue that cannot be explained by any underlying medical condition.


Additionally, she suffers from chronic migraines with aura, which cause severe headaches accompanied by sensory disturbances such as visual flashes or blind spots. According to The Migraine Trust, a Chronic Migraine is defined as, "having headache on at least 15 days per month, with eight of these having migraine symptoms, for at least three months."


On top of this, Abi has been diagnosed with Polycystic Ovary Syndrome (PCOS), a gynaecological condition that leads to hormonal imbalances and various complications. These complications include irregular menstrual cycles, weight gain, and an increased risk of diabetes.


Additionally, she experiences intermittent tachycardia, a condition in which the heart occasionally beats faster than usual, leading to episodes of dizziness and shortness of breath.


Furthermore, Abi is also currently undergoing testing for gastrointestinal issues related to bile acid malabsorption.


 
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To find out more about Abi’s Conditions, click the links below:


Complex Regional Pain Syndrome (CRPS)

Fibromyalgia

M.E./CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)


 

A young woman taking a selfie in the mirror of her using a walker.
Abi uses mobility aids due to her conditions.
"I use a wheelchair on most weekends to rest, a walking stick most days, and sometimes a walker. That was hard to accept." 

Given the many diagnoses, it's not surprising that Abi has faced significant mental health challenges due to her health experiences. Along with her physical diagnoses, she also bravely shares her struggles with depression and generalised anxiety, highlighting the immense psychological toll of living with multiple chronic conditions.


Abi has faced the daunting task of accepting a series of challenging diagnoses, including fibromyalgia, CRPS, and M.E., for which no cure currently exists. She acknowledges that every day is a struggle as she strives to manage symptoms and enhance her quality of life through a mix of medications, physical therapy, psychological support, and lifestyle adjustments. Her journey toward embracing and adjusting to these conditions has been a lengthy and demanding process, and, at times, it is still ongoing.


Coming to terms with using mobility aids as a young person with a chronic illness is an incredibly challenging journey, both emotionally and socially. For Abi, the path to accepting mobility aids was fraught with difficulty. Her conditions, which can severely impact mobility, are often misunderstood and stigmatised, leading to misconceptions and judgment from others.


Fibromyalgia, M.E., and CRPS are conditions that not only bring about intense physical pain and fatigue but also come with an invisible aspect that makes the struggle even more complicated to communicate and validate. This invisibility often leads to scepticism and unwarranted judgment from those who do not understand the full extent of these illnesses. For a young person, societal expectations of vitality and independence add another layer of complexity to this challenge.


Abi's reliance on a wheelchair during weekends and a walking stick or walker during the week is a testament to her courage and determination to prioritise her health. It took her three years to fully embrace these aids, a period marked by emotional turmoil and resistance. The initial hesitation stems from a natural desire to maintain independence and avoid the stigma associated with mobility aids. This resistance is compounded by the societal bias that equates the use of mobility aids with weakness or surrender to illness.


However, the eventual acceptance of these aids signifies a significant turning point. It reflects a pragmatic approach to managing her health and an admirable level of self-compassion and strength. Abi's decision to use mobility aids allows her to conserve energy and manage her symptoms more effectively, ultimately improving her quality of life. This acceptance doesn't come easily; it requires facing internalised fears and the external prejudices of a society that often fails to understand chronic illnesses.


Abi's journey highlights the importance of de-stigmatising mobility aids and recognising them as tools of empowerment rather than symbols of defeat. By prioritising her health and well-being, she sets a powerful example for others facing similar challenges. It is a reminder that the bravest choices often involve confronting societal misconceptions and advocating for one's needs despite potential judgment. In doing so, Abi not only enhances her own life but also contributes to a broader understanding and acceptance of chronic illnesses and the necessary accommodations that come with them.


 
"I was heartbroken when I couldn't pursue my dream job as a paramedic after being rejected from university."

Throughout her life, Abi had always dreamed of becoming a paramedic. The idea of making a meaningful impact on her community and saving lives was incredibly inspiring to her. However, her journey was drastically altered by the numerous health challenges she faced. Reflecting on her experiences, Abi describes one of the most difficult moments as the realisation that her chronic health conditions would prevent her from achieving her lifelong goal. Despite her unwavering determination and dedication, her health issues posed insurmountable barriers, highlighting the harsh reality of how chronic illnesses can derail professional aspirations.


Chronic illnesses like CRPS, fibromyalgia, and M.E. can severely impact a person's ability to work or pursue their dreams. The unpredictable nature of these conditions—marked by chronic pain, fatigue, and mobility issues—makes it extremely challenging to meet the physical demands required by specific careers. For Abi, the dream of becoming a paramedic was challenging due to the need for physical endurance, quick reflexes, and the ability to handle high-stress emergencies. Accepting that her health conditions would prevent her from achieving this goal was heartbreaking, reflecting a common struggle for many with chronic illnesses who must reconcile their aspirations with their physical limitations.


This setback could have easily led to despair, but Abi chose a different path. She refused to let this disappointment define her future. Instead, she sought new opportunities, determined to find fulfilment and purpose in another way.


In the following months, Abi discovered a new role as a teaching assistant in a primary school. This career change proved to be a transformative decision, allowing her to use her skills while finding immense satisfaction in her work. Unlike the physically demanding role of a paramedic, being a teaching assistant provided a more accommodating environment for Abi's health conditions.


As a teaching assistant, Abi found a role that suited her strengths and abilities. Rather than focusing on physical tasks that could worsen her symptoms, she was able to support students' learning and development, assist in the classroom, and foster a positive educational experience for young learners.


Abi's proudest achievement is becoming a qualified teaching assistant, with hopes to further her education and become a teacher. "Powering through when I'm struggling most is hard, but I want to be the best version of myself I can, despite my conditions," she says. While the teaching assistant role may not have been her original dream of being a paramedic, Abi found a deep sense of accomplishment and joy in her new career. She embraced the chance to make a meaningful difference in the lives of children, finding fulfilment in a role that accommodated her health needs while still allowing her to pursue her passion for helping others.


Abi's story powerfully reminds us that resilience and adaptability can lead to unexpected opportunities for growth and fulfilment, even in the face of adversity. By embracing change and exploring alternative paths, individuals like Abi can find purpose and happiness in careers that may differ from their original aspirations but are perfectly suited to their unique circumstances and abilities.


 

"Powering through when I'm struggling the most is incredibly difficult, but I want to become the best version of myself despite my circumstances."

When things are difficult, Abi has found solace not only in her current teaching assistant role but also in her relationship with her supportive partner. This relationship has been a cornerstone of her emotional resilience, providing a steady source of love and encouragement that helps her navigate the complexities of living with chronic illness.


She also recognises the important role her mother has played throughout her journey, particularly in the early days of her health journey when she was just a child. When Abi felt she couldn’t advocate for herself, having her mum there to fight in her corner made all the difference in the world. It’s something she will forever be grateful for.


Crocheting has become a vital source of peace for Abi, particularly during the most challenging times. The rhythmic motion of the craft allows her to focus her mind and hands-on creating something beautiful, offering a therapeutic escape from the pain and fatigue that often accompany her conditions. Each stitch represents a small triumph over the limitations imposed by her health, and the finished products are tangible reminders of her perseverance and creativity.


Abi’s two cats, who bring her happiness and joy.


Her two cats provide comfort, intuitively sensing when she most needs their companionship. These feline friends are more than just pets; they are a constant source of affection and emotional support. Their presence offers a sense of calm and normalcy, grounding Abi when her health challenges feel overwhelming.


Gaming with her partner and enjoying game nights with friends offer much-needed escapism and joy. These activities not only provide a break from the daily struggles but also foster a sense of community and connection. Engaging in these social and recreational activities helps Abi maintain a balanced and fulfilling life despite the limitations imposed by her chronic illnesses.


"My note of hope - you're going to go through several years of pain and exhaustion, and you're going to lose yourself—a lot. But keep going because the light at the end of the tunnel is near, and you'll find a whole new purpose. I'm so proud of you."

Abi's journey, marked by years of pain and exhaustion, carries a message of unwavering hope and resilience. She offers encouragement and strength to those facing similar struggles, reminding them that amidst the darkness, the light at the end of the tunnel shines bright. Her story is a testament to the power of persistence and the importance of finding joy in small, everyday moments.


Abi's advice to her younger self and others in similar situations is profoundly moving. She acknowledges the inevitability of difficult times but emphasises the importance of pushing forward. Her message underscores the idea fulfillmentthat while chronic illness can disrupt and reshape one's life, it can also lead to new and fulfilling paths that were previously unimaginable.


Despite her health challenges, Abi's ability to find happiness in her hobbies, relationships, and career is a powerful reminder that joy and fulfilment are possible even in the face of adversity. Her journey illustrates that with resilience, support, and self-compassion, it is possible to create a life filled with purpose and happiness, no matter the obstacles.


 
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Thank you Abi for sharing your inspiring story for the 'A Note of Hope' project.


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