"Today, I’m very proud to share Lola’s chronic illness story to raise awareness for Mast Cell Activation Syndrome (MCAS). Despite her challenges, Lola's resilience, love, and unwavering commitment to her family serve as a source of inspiration to all.” - Ellie Howe, creator and author of 'A Note of Hope.'
At just 33 years old, Lola lives with a multitude of chronic health conditions that have a significant impact on her daily life. Although she has been experiencing chronic pain and gastrointestinal issues for most of her life, Lola only received a diagnosis of fibromyalgia in 2014, after her symptoms intensified following the birth of her last child. Fibromyalgia is a complex chronic condition that is characterised by widespread pain throughout the body. People with fibromyalgia may also experience a heightened sensitivity to pain and pressure in areas of the body. This sensitivity can be so severe that even a slight touch can cause pain.
In addition to pain, fibromyalgia can cause a range of other symptoms, such as fatigue, sleep disturbances, headaches, cognitive problems, and irritable bowel syndrome (IBS). Cognitive problems associated with fibromyalgia can include difficulty concentrating, forgetfulness, and a lack of mental clarity. These can impact an individual's ability to perform tasks that require concentration and focus.
While this provided some clarity for Lola about the symptoms she had been experiencing throughout her entire life, receiving a diagnosis of fibromyalgia can also be a difficult thing to come to terms with, as it is a chronic condition that is currently incurable. Although treatments are available to manage its symptoms and improve quality of life, such as medication, lifestyle changes, exercise, physical therapy and cognitive behavioural therapy, finding the right combination of therapies that works for each person can be challenging. Some people may never experience significant relief from their symptoms despite trying various treatments and interventions.
Lola's burden was further increased when she was diagnosed with Chronic Post-Traumatic Stress Disorder (CPTSD), anxiety, and depression in 2010. In 2018, she was diagnosed with Autism, which complicated her existing conditions even more.
"In October 2022, I experienced anaphylaxis, which was terrifying as I had no previous allergies. For two weeks, I could only drink water as eating anything triggered an anaphylactic reaction"
In 2022, Lola experienced an anaphylactic shock, which is a severe and potentially life-threatening allergic reaction, despite having no known allergies. Medical professionals were confused and concerned as they grappled with the mystery of what triggered such a severe reaction seemingly out of nowhere. To manage her condition, doctors prescribed antihistamines and asthma medication, and Lola had to endure two weeks with only water as she suddenly developed severe reactions to food.
Since doctors were unable to identify the exact cause of her initial anaphylactic shock, they reluctantly diagnosed her with Chronic Spontaneous Idiopathic Urticaria and Angioedema, a condition characterised by red, raised, itchy, and sometimes painful hives or wheals on the skin with no apparent trigger. However, Lola remains unconvinced that this diagnosis thoroughly explains her sudden anaphylactic reaction and the subsequent symptoms she has since endured. Through research, she strongly believes her symptoms better align with Mast Cell Activation Syndrome (MCAS). She is now convinced her diagnoses of Chronic Spontaneous Idiopathic Urticaria and Angioedema, as well as Fibromyalgia, are MCAS.
Mast Cell Activation Syndrome (MCAS) is a condition in which mast cells, essential components of the immune system, become overactive and release excessive chemical mediators such as histamine, prostaglandins, and cytokines. This increased activity triggers debilitating symptoms similar to those seen in allergic reactions, affecting various organ systems, including the skin, gastrointestinal tract, cardiovascular, and respiratory systems. In severe cases, MCAS can even lead to anaphylactic shock. Unfortunately, Lola has been unable to receive a diagnosis or treatment for MCAS within the NHS due to its lack of recognition and diagnosis, which is due to the absence of NICE guidelines.
As a result, Lola has encountered additional challenges in managing her condition and accessing appropriate medical care. The effects of her conditions have significantly impacted her quality of life, transforming her from an active individual who enjoyed activities like horse riding, swimming, and crafting into someone often bedbound and reliant on a wheelchair. Anaphylactic reactions cast a shadow over her daily life, triggered by food, drink, temperature changes, exercise, and stress. "I've managed to work up to five 'safe' foods and two drinks," she shares, underscoring the harsh reality of her situation.
Over a year and a half since the initial incident, Lola still finds herself navigating through a maze of uncertainty due to minimal treatment options. "I was offered one monthly injection to try and calm my system," she explains, "but unfortunately, it triggered a month-long anaphylaxis reaction". Currently, Lola is relying on antihistamines and steroids to try and manage her symptoms. However, the steroids have led to weight gain and other undesirable side effects, prompting Lola to begin tapering off them.
Adding to her health concerns, Lola recently discovered she has a cyst on her pituitary fossa gland, which doctors suspect might be exacerbating her symptoms, but, unfortunately, she won't be able to see a neurologist until December 2024.
To find out more about Mast Cell Activation Syndrome (MCAS), click the link below:
Mast Cell Activation Syndrome (MCAS)
In people affected by MCAS, chemicals called mast cell mediators are released too frequently or abundantly, and/or in response to triggers that are not typically considered to be harmful, for example; foods or chemicals in the environment. This can lead to a wide range of symptoms affecting multiple body parts.
“For me the most challenging thing is the grief, for the life I had and the future I had always envisioned. I miss many things I used to take for granted, such as travelling, eating, and drinking."
With honesty and openness, Lola shares that for her, the most challenging aspect of coping with her illness has been the deep sense of loss and grief for the life she once had and the life she had hoped to have. Lola's words capture the essence of the emotional journey many individuals face when dealing with chronic illness. The physical demands of managing a chronic illness can be overwhelming, but the emotional impact is often underestimated.
Lola speaks with a sense of longing as she expresses her desire to be able to travel, eat, and drink again. Her words highlight the stark contrast between her current reality and the life she once knew. The simple pleasures she once took for granted - the taste of a delicious meal, the experience of a new city, the joy of sharing a drink with friends - now feel distant and unattainable.
"It's frustrating not being able to spontaneously spend time with my children due to my illness. I feel restricted and scared all the time."
Living with a chronic illness is a heavy burden to bear, and it becomes even more challenging when you're a parent. Lola, being a mother herself, acknowledges that managing the daily responsibilities of motherhood is even more complicated when coupled with the physical and emotional burden of dealing with a chronic illness. Every day is a challenge for her, as she has to manage her illness while also taking care of her children.
Even the simplest tasks, such as planning a day out with her children, have become a daunting challenge. Lola always fears experiencing a flare-up or sudden deterioration in her health when she's with her children. This fear is not unfounded, as her chronic illness can be unpredictable and debilitating. It has completely changed her life and how she interacts with her children.
This constant fear has cast a shadow over what should be moments of joy and connection with her children. Lola is constantly worried that her illness will prevent her from being the mother that she wants to be. She feels guilty for not being able to do all the things that other mothers do, like playing with her children and taking them on adventures.
Despite her challenges, Lola remains determined to be the best mother she can be. Her story is a reminder that living with a chronic illness is not just about managing the physical symptoms. It's also about finding the strength to keep going, even when it feels like the odds are stacked against you.
Lola with her family and loved ones.
"I'm looking forward to warmer, drier weather. A bit of sunshine always helps brighten people's day and bring joy to our lives."
Due to the nature of her condition, Lola often finds herself confined to her home. However, she has found comfort in the simple pleasures of daily life. She reveals that she spends a lot of time watching TV and chatting with her friends and family, emphasising the importance of maintaining connections and seeking comfort in familiar pastimes, especially during difficult times.
Besides human companionship, Lola finds joy in spending time with her beloved animals. She has dogs, a ferret, and chickens who provide comfort and companionship during moments of solitude, reminding her that she is never truly alone.
“I'm proud that I've managed to keep my family afloat despite my struggles. I may not have the time to scratch cook, bake or take them out as often as I once did, but I still make sure they are clothed, fed and loved."
Lola's greatest accomplishment is her unwavering commitment to her family. Although she recognises that she may not have the energy to cook from scratch, bake, or organise outings as frequently as before, she finds comfort in knowing that her children are well-fed, clothed, and deeply loved.
From ensuring her children attend school on time, get involved in extracurricular clubs, and make their playdates, Lola takes great care in ensuring that her children's needs are always met. She works hard to ensure her children don't feel the weight of her health issues impacting their lives, and even when it feels like she can only provide the "bare minimum," Lola never gives up.
Reflecting on her journey as a mother whilst dealing with chronic health conditions, Lola shares, "Honestly, just managing to keep my family afloat, even if I can't keep myself afloat, is an achievement for me these days." Her words convey the gravity of the sacrifices she's had to make, yet also highlight her unwavering commitment to prioritising her children's well-being and happiness.
In a lighthearted nod to the realities of her situation, Lola offers practical advice to others facing similar challenges. "Start saving now because private health care would be a great option!” she quips, acknowledging the potential benefits of additional support and resources. Yet, she also imparts a message of hope and perspective, reminding herself and others that "everything has a season; this too will pass."
Thank you Lola for sharing your inspiring story for the 'A Note of Hope' project.
Thank you so much for sharing your story Lola x