"Today, I am very grateful to share Immy’s story, which offers insights into the challenges and triumphs of living with M.E." - Ellie Howe, creator and author of 'A Note of Hope.'
Myalgic Encephalomyelitis (M.E.), also known as Chronic Fatigue Syndrome (CFS), is a complex chronic illness that affects millions of people worldwide. The most common symptom of M.E. is severe fatigue that may worsen with physical or mental exertion, a phenomenon known as post-exertional malaise.
For Immy, the onset of symptoms was a gradual descent into a world of fatigue, joint pain, and gastrointestinal distress, diagnosed as irritable bowel syndrome. Over time, her condition escalated into a relentless battle against a multitude of debilitating symptoms, including pressure headaches, vertigo, tinnitus, suspected Postural Orthostatic Tachycardia Syndrome (POTS), muscle weakness, and sleep disturbances.
"It took me five and a half years to be officially diagnosed," Immy reveals, echoing the all-too-common experience of prolonged uncertainty faced by many with M.E/CFS. As the exact cause of M.E/CFS remains unknown, its diagnosis can be challenging due to the absence of specific biomarkers or diagnostic tests.
“I'm living with myalgic encephalomyelitis (ME/CFS). My first symptoms were fatigue, joint pain and IBS, since then I've developed more symptoms, including pressure headaches, vertigo, tinnitus, blood pressure issues (suspected POTS), muscle weakness and sleep issues. It took me 5 and a half years to be officially diagnosed” - Immy.
To find out more about Immy’s diagnosis, click the link below:
M.E/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
Myalgic Encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition with a wide range of symptoms. The most common symptom is extreme tiredness.
For many patients, both the physical and emotional toll of this illness can be daunting. The unpredictable nature of M.E/CFS, coupled with a lack of understanding, often leads to isolation and frustration.
Immy acknowledges this struggle, stating, "The biggest challenge I've faced is facing the fact that my life won't go the way I had planned or return to the way it used to be."
Many individuals with M.E/CFS find it challenging to maintain employment, pursue education, or participate in social activities due to the limitations imposed by their symptoms. Despite ongoing research, there is currently no cure for M.E/CFS, and treatment primarily focuses on managing symptoms and improving quality of life. However, the combination of this challenging prognosis and symptoms often being overlooked or misdiagnosed can result in individuals searching for years, or even their entire lives, for appropriate care and treatment plans.
“The biggest challenge I've faced is having to face that my life won't go the way I had planned or return to the way it used to be” - Immy.
Despite her persistent and limiting symptoms, Immy demonstrates strength and perseverance as she seeks small joys daily. She finds comfort and solace in simple pleasures, such as hot drinks and spending time with friends, even if she only manages a movie night at home.
“What brings me joy is hot drinks and spending time with friends, even if they just come over and watch films!” - Immy.
In addition, Immy exemplifies the courage often exhibited by individuals living with M.E/CFS. "I'm proud that I've educated those around me about my condition and other chronic illnesses," she shares, highlighting her commitment to making a difference. Through her efforts to raise awareness, educate others, and participate in research studies, Immy embodies hope and determination in the face of adversity.
“I'm proud that I've educated those around me about my condition and other chronic illnesses and have taken part in studies to find the cause of my condition” - Immy.
In a heartfelt message to her past self and all those grappling with M.E/CFS, Immy offers these words of encouragement: "Keep advocating for yourself. You know your body more than anyone else, and if something is wrong, then keep searching for the answer." This is a testament to her resilience and an inspiring reminder for others.
“A message to my past self: it may seem tough but keep advocating for yourself no matter what medical professionals or family members say, you know your body more than anyone else and if something is wrong then keep searching for the answer.” - Immy.
Thank you Immy for sharing your inspiring story for the 'A Note of Hope' project.