Book Recommendations for Chronic Illness/Myalgic Encephalomyelitis Sufferers
I think it is only right for me to share with you my must-read book recommendations for Myalgic Encephalomyelitis sufferers. I have turned to these books many times since my diagnosis as it is incredibly scary to start feeling worse with an illness like Myalgic Encephalomyelitis. So any time that I started getting more pain or I felt worse than normal I have used these books to see if it could be additional Myalgic Encephalomyelitis symptoms.
I was diagnosed with Myalgic Encephalomyelitis in 2012 but to get enough confidence to disagree with the Consultant I read a lot of books, so in the hope that this could be as useful for you as it was for me here are some of my book recommendations for chronic illness myalgic encephalomyelitis sufferers.
Welcome
If you are new to my page, Hi my name is Alisha. I am mid-forties now and on top of getting older I have Myalgic Encephalomyelitis, Endometriosis, De Quervains Syndrome in both hands and Steatohepatitis. Thank heavens for spell checkers 🤣
I have really tried to work on myself since I was diagnosed and while I have been lucky enough to learn new skills practically reading has always helped my curiosity to learn, so with the help of Audible and more recently Borrow Box from my local library I have still been able to do that
I do hope that you read one or more of these books but most importantly I hope that you take enough confidence from my personal experience to go carry out your research. It is you who suffers from this illness or any illness for that matter and you know your body better than anyone. Most Drs are incredibly analytical so being able to show them records of your temperate, your pain level from 0-10, keep details relating to where you are experiencing pain, how long the pain lasted, and whether anything makes your pain go away or make your pain worse.
Living Well With Endometriosis
After being told over many different appointments and over the years by different Consultants that I was suffering from IBS I felt like giving up. Even after showing data that showed a pattern always around the time that I would be ovulating, I was just fobbed off.
I did not have any of the normal IBS symptoms and I knew all about IBS as My Husband has suffered with it since high school. However, I did get severe pain just below my last rib, this pain was strong enough to leave me doubled over in pain unable to move a muscle as this pain was just too much for me but just enough similarity to tell me it was just IBS.
After searching the Internet for months I was certain that this pain was Endometriosis I was also absolutely sick and tired of medical professionals just hearing what they wanted to hear.
I found “Living Well With Endometriosis ” on Amazon with really good reviews but it also had reviews from Endometriosis teams as well as research centres. The day after the book arrived the pain started building so my Husband ran me a bath in the hope of easing the pain slightly. I asked My Hubby to grab me this book so I could flick through a few pages while I lay in the bath.
I spent hours lying in that bath just topping up the hot water. I had in my hands someone who understood what I was feeling but more than that the Author Kerry Ann Morris was a sufferer herself.
The next day I got an emergency appointment with my Dr, I don’t know if it was from the relief that someone understood me and could help me get that across objectively. After telling him everything he asked me What I thought I was suffering from and of course, I said Endometriosis, he replied “I agree”.
I was just so tired and emotional from little sleep while inside my head I was struggling to think straight as so much was going on. I may have shed a tear, ok I shed a lot.
My Dr went on to explain that in rare cases the pain can be felt as high up as under the rib and that with the data I was able to give to him we could see that sure enough every time around ovulation my pain increased. Within a week I was able to see a Gynaecologist Consultant who from an internal exam alone was able to confirm that I have Endometriosis in an area called The Pouch Of Douglas.
“Living Well with Endometriosis ” changed my life and while the treatment plan I had laid out wasn’t the most pleasant chapter in my life it helped. Without this book, I would probably still be taking Gaviscon.
If you have or think you may have Endometriosis order “Living well with Endometriosis ” and read it cover to cover, then go over the bits that are relevant to your symptoms and then sit down to talk it over with your medical professional. Don’t suffer in silence, worst-case scenario you don’t have Endometriosis, flip all of that on its head as you have now been able to cross another illness that could have been from your list. Fantastic book recommendations for chronic illness myalgic encephalomyelitis sufferers
Click to purchase Living with Endometriosis
Atomic Habits
Nothing to do with Myalgic Encephalomyelitis but worth reading for sufferers who work or those of us who need help seeing life a little differently since their diagnosis.
“Atomic Habits” by James Clear changes our focus completely. Instead of apprehensively putting something off why not set a timer for 15 minutes once the 15 minutes is up give yourself a pat on the back and go back to conserving as much energy as possible. If you are having a bad day set the alarm for 5 minutes but the most important thing is you are still getting stuff done, you are being proactive, using half a spoon instead of a full one.
“Atomic Habits” is not marketed to us yet I still believe that people with Myalgic Encephalomyelitis can benefit from reading what James Clear has to say. He goes into physiology and neuroscience and talks about the forgotten art of habit stacking. Each day making a list of all of the things that you must do yet taking a small chunk out of each of these tasks is still making a dent in our task list, doing your ironing for 2 minutes a day still gets that ironing pile down at the end of the week but you are conserving your energy enough to read a book to your kids at bedtime or having a quick phone call with a friend you haven’t caught up within weeks.
We all know just how good it feels to tick items off of our task lists yet instead of procrastinating for an hour using your spoons in a bad way you are getting stuff done. Too much of our lives with this awful illness is negative so being able to stay happy and motivated is a huge win, so please stop berating yourself for being unable to live your life the way you used to and have a read of Atomic Habits.
Click to purchase Atomic Habits
The Puzzle Solver
On the front cover of “The Puzzle Solver” it says
A Scientist’s Desperate Quest to Cure the Illness that Stole His Son
This book is about Whitney who before he got ill was travelling the world as a photographer until an undiagnosed illness left him with a body he no longer knew.
“The Puzzle Solver” was so hard for me to read as it talks about how his Father felt, which is a side of the story that many of us cut out of our lives as we have so much on fighting every day to live some sort of normality. I know from personal experience that anything that raises my heart rate can leave me as drained as physical tasks do. For that exact reason I have cut things like that from my life, I’ve had to.
Unfortunately, every one of us knows what it feels like to feel that we are not being listened to by medical professionals and I must state that in many cases they are not at fault for that. It comes down to funding and while we all wish that we had a Dr fighting with everything they have to give us answers most Drs have a full waiting room of patients and not enough time to even allow us to tell them all of our symptoms.
“The Puzzle Solver” tells a story that many of us had no idea about and is worth a read. Which is why it is one of my book recommendations for chronic illness myalgic encephalomyelitis sufferers
Click to purchase The Puzzle Solver
A Life Worth Living
Dr Michael Midgley suffered from Myalgic Encephalomyelitis for 35 years and while this book was published in 1995 it still could help sufferers today. I know that it changed a lot for me in the early days.
One of the book’s strengths is its incorporation of real-life experiences shared by ME patients. These personal stories provide a sense of connection and empathy, helping readers realise that they are not alone in their struggles.
A Life Worth Living” is a compassionate and informative guide that empowers ME Sufferers to navigate their journey with greater understanding and resilience. It stands as a testament to the enduring value of Dr. Midgley’s expertise in the field of ME.
The book covers a wide range of topics related to ME, including its causes, symptoms, diagnosis, treatment options, and practical advice for daily living, This book is intended for ME Sufferers, their caregivers, and healthcare professionals seeking to enhance their knowledge about the condition
“A Life Worth Living” is a compassionate and informative guide that empowers individuals with ME to navigate their journey with greater understanding and resilience. It stands as a testament to the enduring value of Dr. Midgley’s expertise in the field of ME.
Click to purchase A life worth living
Science, Politics, and ME: A Health Scandal in Our Generation
“Science, Politics, and ME” gives insight into the complex and often controversial world of Myalgic Encephalomyelitis (ME). I found this book to be not only informative but also profoundly moving, it sheds light on the science, politics, and personal stories synonymous with this debilitating illness. The book shows the dedication and passion for raising awareness about ME, and it serves as a rallying cry for change.
One of the standout features of this book is its comprehensive exploration of the scientific aspects of ME. Dr Ian Gibson (Author), and Ms Elaine Sherriffs (Author) meticulously explain the complexities of the condition, from its potential causes to the challenges in diagnosis and treatment. Thankfully it talks science into a concept more easily understood by the normal sufferers making it an excellent resource for both patients and healthcare professionals.
The political dimension of ME is also thoroughly examined. “Science, Politics and ME” pulls no punches in exposing the systemic issues that have hindered progress in understanding and addressing ME. Through meticulous research and compelling arguments, they highlight the urgent need for policy changes and increased funding for ME research. This book was published in 2017 and while remaining current it shines a spotlight on that time allowing us to see our progression.
I applaud the authors as reading this as a sufferer or someone with your health this book gives very different experiences. If you have no connection to ME to read through the pages of “Science, Politics, and ME,” you’ll not only gain a comprehensive understanding of the illness but also a profound sense of empathy for those living with it. It’s a powerful reminder that behind every medical condition, there are real people with real lives, dreams, and struggles.
This book is impeccably researched, with a wealth of citations and references. It’s clear that significant time and effort were invested, making this book a trustworthy resource for anyone seeking to learn more about ME.
In conclusion, “Science, Politics, and ME: A Health Scandal in Our Generation” is a must-read for anyone interested in healthcare, advocacy, and the pursuit of change.
Click to buy Science Politics and ME
Living With M.E.: The Chronic/Post-Viral Fatigue Syndrome
“Living With M.E.” by Dr. Charles Shepherd was one of the very first books I bought and when it arrived I read it cover to cover while sat in a nice hot bath. I think this is one of my top books for Myalgic Encephalomyelitis sufferers.
I will never be able to thank The ME Association enough for how they helped me over the first weeks and months of this illness.
At the very beginning of my symptoms, I was still able to work however the amount of work I was having to take off was increasing. I have no idea how much damage I did to my body back then but I absolutely believe that what I did back then is one of the reasons I got so ill so quickly.
While some employers will give you all of the support you need some will only say they do, making you feel immense pressure to get back to work. No matter the illness you have if you are sick for an extended amount of time read your employment contract and your company handbook if they have one.
If you feel pressure to get back to work do not give in to it!
My Dr was writing me sick notes because I was so ill but the moment I had a good day I was begging the Dr to sign me back into work. The drive alone would leave me exhausted.
I will never forget the first day back after being away a few weeks and a work friend started walking towards me, I could not remember his name, he was walking up to me and I was absolutely blank. He sat next to me asking me how I had been and all I felt was intense fear. That day made me take all of this a lot more seriously I had forgotten the names of many things since I have been sick and it is scary every time but luckily My family understand it is a part of my illness so they give me the time to answer or they allow me to just walk away.
“Living with ME’ is an invaluable resource for individuals living with Myalgic Encephalomyelitis (ME), which is also known as Chronic Fatigue Syndrome (CFS), and those who seek to understand this complex and often misunderstood condition.
Dr. Shepherd, an experienced medical professional and the medical advisor to the ME Association, offers insights into the medical, psychological, and social aspects of ME.
One of the standout qualities of this book is its comprehensive and empathetic approach. Dr. Shepherd begins by explaining the medical aspects of ME in a way that is accessible to both patients and their families. He dives deep into the scientific understanding of ME, addressing the symptoms, diagnostic criteria, and potential causes of this debilitating illness. His explanations are clear and thorough, making it easier to grasp the complexities of Myalgic Encephalomyelitis.
The book also delves into the day-to-day challenges faced by ME patients. Dr. Shepherd explores the impact of ME on various aspects of life, including employment, relationships, and overall quality of life. His emphasis on the emotional and psychological toll of the illness is particularly enlightening, offering insights into the mental health aspects often overlooked by others.
Dr. Shepherd provides practical advice on managing ME symptoms, pacing activities, and accessing appropriate medical care. He also discusses the role of support networks and patient organisations, which can be immensely helpful for new ME sufferers.
One of the book’s strengths is its up-to-date information. While it was published in 1999, Dr. Shepherd periodically revised the content to reflect the latest research and developments in ME. This commitment to staying current ensures that readers receive the most relevant and accurate information.
Living with ME is an essential read for ME suffers, make time to read this cover to cover highlighting the parts that you know you will refer back to. Once you have read this book ask your immediate family to do the same as this illness will affect them too, no matter how much we wish it didn’t.
Dr. Shepherd’s expertise, compassion, and dedication to raising awareness and improving the lives of ME patients shine through in this book. It serves as a beacon of hope and a source of valuable knowledge for those on their journey to better understand and manage Myalgic Encephalomyelitis.
Click to purchase Living with ME
From Grange Hill to Bipolar and Back
I wanted to include this as I believe that mental health is hugely important to anyone with a chronic illness.
I am incredibly lucky to be able to call George a friend, George is one of the funniest most talented people that I have ever had the pleasure to meet. He can do it all, he sings beautifully and his comic timing is immense, You all know how amazing his acting is from his Grange Hill and Brookside days. Reading this made me really think about how little we know people and how we really should spend more time listening to people especially if it is someone you know who isn’t their normal self, Never just accept that they are okay or that it is not your place.
“From Grange Hill to Bipolar and Back” is an extraordinary memoir penned by George Christopher Wilson, shedding light on the tumultuous and deeply personal voyage through the labyrinthine landscapes of bipolar disorder. This book transcends the boundaries of conventional memoirs, offering readers a unique perspective on the complexities of mental health.
George’s writing is candid, poignant, and unapologetically raw.
“From Grange Hill to Bipolar and Back“ takes us on an intimate journey with George baring his soul as he recounts his life’s struggles with bipolar disorder. From his early days at Grange Hill to the challenging ups and downs of managing his condition, George has had to give up a lot to get to today and he talks about this with total honesty.
George doesn’t shy away from sharing the darkest moments of his life, including his experiences with hospitalisations and the impact of his condition on his personal relationships. His vulnerability is both courageous and enlightening, offering readers a deeper understanding of the daily battles faced by those living with bipolar disorder.
“From Grange Hill to Bipolar and Back” is not just a personal narrative; it’s a call to action. George emphasises the importance of mental health awareness and the need for a more compassionate and informed society. His determination to break the stigma surrounding mental illness is palpable throughout the book.
“From Grange Hill to Bipolar and Back” is a powerful testament to the strength of the human spirit. George Christopher Wilson’s journey from darkness to recovery is a story that will stay with you long after you’ve turned the final page. It’s a story of resilience, hope, and the unwavering determination to make a difference not only in one’s life but in the lives of others. This book is not only an inspiration but also a valuable addition to the literature on mental health awareness. Not a book about Myalgic Encephalomyelitis but i think anyone with any type of illness should read this as he talks about his triggers. Still one of my top books for Myalgic Encephalomyelitis sufferers.
Click to buy From Grange Hill to Bipolar and Back
Please leave me your recommendations
I would love to hear your opinions and recommendations for books that have helped you. Post any recommendations in the comments and make sure you sign up for this website as well as my YouTube channel.
YouTube
I never thought that I would fall in love with learning new skills and yes it has taken me 10 years to learn skills that it takes some people a week to master but writing and filming are really giving me something to be happy about. To get my voice out there I need your support so please visit my channel, have a look at my other videos and please like comment & subscribe. The more people who watch it the more people the YouTube algorithm will show it to so liking the video, leaving me a comment and subscribing to the channel makes a huge difference.
I’m trying to make a difference and any help or support you can give would be greatly appreciated. I feel like my head is all over the place at the moment so if you have contacted me and I haven’t responded I promise you that I am not ignoring you, Feel free to message me again if it is urgent or time-sensitive.
Please leave me your recommendations
I would love to hear your opinions and recommendations for books that have helped you. Post any recommendations in the comments and make sure you sign up for this website as well as my YouTube channel.
YouTube
I never thought that I would fall in love with learning new skills and yes it has taken me 10 years to learn skills that it takes some people a week to master but writing and filming are really giving me something to be happy about. To get my voice out there I need your support so please visit my channel, have a look at my other videos and please like comment & subscribe. The more people who watch it the more people the YouTube algorithm will show it to so liking the video, leaving me a comment and subscribing to the channel makes a huge difference.
I’m trying to make a difference and any help or support you can give would be greatly appreciated. I feel like my head is all over the place at the moment so if you have contacted me and I haven’t responded I promise you that I am not ignoring you, Feel free to message me again if it is urgent or time-sensitive.
Amazon Affiliate
All Amazon links are affiliate links. If you have any questions about this please email me at ask@alishawhittam.com
Amazon Affiliate
All Amazon links are affiliate links. If you have any questions about this please email me at ask@alishawhittam.com
If you have Myalgic Encephalomyelitis or a Chronic Illness which has affected your life and you want someone to talk to please get in touch with me at ask@alishawhittam.com
Throughout my website I have included information on some of the groups that I have set up, slowly we are building our own ME Community and I hope that you can be a part of that too.
Click here for more information – Building a New ME Community