chronic fatigue syndrome

All posts tagged chronic fatigue syndrome

It’s All In Your Head: True Stories of Imaginary Illness – Suzanne O’Sullivan

Published September 22, 2018 by bibliobeth

What’s it all about?:

‘Even if medical tests cannot explain your pain or tiredness or disability, it does not lessen your suffering. The pain of medically unexplained illness is every bit as real as any other and, if anything, is multiplied by the lack of understanding.

Most of us accept the way our heart flutters when we set eyes on the one we secretly admire, or the sweat on our brow as we start the presentation we do not want to give. But few of us are fully aware of how dramatic our body’s reactions to emotions can sometimes be.

Take Pauline, who first became ill when she was fifteen. What seemed at first to be a urinary infection became joint pain, then food intolerances, then life-threatening appendicitis. And then one day, after a routine operation, Pauline lost all the strength in her legs. Shortly after that her convulsions started. But Pauline’s tests are normal; her symptoms seem to have no physical cause whatsoever.

Pauline may be an extreme case, but she is by no means alone. As many as a third of men and women visiting their GP have symptoms that are medically unexplained. In most, an emotional root is suspected and yet, when it comes to a diagnosis, this is the very last thing we want to hear, and the last thing doctors want to say.

In It’s All in Your Head consultant neurologist Dr Suzanne O’Sullivan takes us on a journey through the very real world of psychosomatic illness. She takes us from the extreme — from paralysis, seizures and blindness — to more everyday problems such as tiredness and pain. Meeting her patients, she encourages us to look deep inside the human condition. There we find the secrets we are all capable of keeping from ourselves, and our age-old failure to credit the intimate and extraordinary connection between mind and body.

What did I think?:

Oh, the thoughts. Oh, the feelings. Let me try and start at the beginning and I’m hoping my words make some sort of coherent sense. If not, I apologise. I have a couple of non fiction shelves at home (which you’ll see in due course if you enjoy my Shelfie by Shelfie book tag), and never seem to get round to reading them until this year, I began a new venture where I read three books at once – a current “main” read, a non-fiction read and a re-read of an old favourite. I’ve been eagerly anticipating many of my non-fiction reads, well….apart from this one. Let me explain. I’m a sucker for an interesting title, cover and synopsis and I don’t shy away from potentially controversial subject matters if it means I can educate myself about particular topics but I really wasn’t sure whether this book might hit a little too close to home, even for me.

Neurologist and author, Suzanne O’Sullivan who won The Wellcome Trust Prize in 2016 with It’s All In Your Head.

If you’ve been following me for a while now, you might have seen in a previous review/post that I’ve been struggling for the past eight years with a chronic illness. Basically, my diagnosis is fibromyalgia with chronic fatigue syndrome and hypermobility. It’s got to the point in my life now where I’m managing to cope really well with it. I still have my bad days of course, and at the end of the week, it’s still a mission to keep myself standing upright but I’m absolutely determined  to stay positive and that it’s not going to take my life away from me. This is why I still continue to work full-time, even if it is quite a struggle at times, I have to be honest. If you want to read more about my story, I wrote a personal post HERE.

As I was FINALLY picking up this book, I felt nervous and excited in equal measure. I didn’t know whether this book was going to make me feel horribly angry or completely vindicated about my own chronic health issues. I posted a picture of the book on Instagram and had some amazing and very interesting responses, many of whom were reacting the same way as I did when I first saw that title. Of course, a title like It’s All In Your Head seems to have been deliberately chosen to be controversial and raise a few hackles and, job done, my hackles were well and truly primed. Nobody with chronic illness likes to be told “it’s all in your head,” especially considering the amount of pain, suffering, physical and emotional turmoil we go through on a daily basis. There is literally nothing else my doctor can do for me and how to manage my pain myself has been one of the hardest lessons I’ve ever had to learn.

However, as I soon came to realise as I made my way through this fascinating and insightful book is that we don’t have to take that title literally and assume the author is saying something she is clearly not. As I’ve learned myself through my chronic illness journey, sadly a lot of my condition is psychological but a) that does not mean I’m going crazy, b) that does NOT mean I’m imagining it, c) my pain IS real and will probably always be there and d) I have to find the best way to cope with it (with the help and support of my loved ones) that will mean I have a fulfilling and enjoyable life. The author does briefly touch on illnesses like fibromyalgia and like she confirms, there is no definitive test for diagnosing it which makes it hard for both the patient and the doctor to ensure that the treatment offered is correct. Obviously more research desperately needs to be done and is ongoing but various studies have shown that although the pain is felt physically in different regions of the body, one theory is that the actual problem may lie in the pain receptors of the brain. In this sense, when you take the phrase “it’s all in your head,” might not mean what I initially assumed it to mean when I looked at the cover of the book and was instantly offended!

In this book, O’Sullivan follows a number of different patients, all with medically unexplained symptoms ranging from tiredness and pain to numbness, paralysis and even violent seizures and when nothing is discovered in blood tests, scans etc, suggests that there may be an emotional connection to the terrifying (and often debilitating) symptoms they are experiencing. She explores some intriguing ideas, including the age-old question – when did it become such a stigma to be psychologically unwell? As a society, we have an undeniable determination to pin everything down with physical evidence of malaise, only accepting cold, hard figures and scientific facts to prove that we are genuinely unwell. However, the individuals she talks about are truly exhibiting physical signs of illness and even if there isn’t a test yet that can decipher exactly what’s going on, O’Sullivan is simply suggesting all possible avenues, even psychiatric ones should be explored so that the patient can get the most appropriate, effective and individual treatment for them alone.

I’m so glad I read this book. Not only was it an absorbing and informative read but personally, I felt like it made me look at my own health problems in a whole new light. I came to this book determined to be angry with it and sceptical of the author’s own thoughts and feelings. However, at the end I felt slightly ashamed when I realised that they were perfectly sound and sensitive, particularly in her reactions to people who are genuinely suffering. Of course there are always going to be “those” people who are attempting to cheat the system and fake illness which is a real shame for those of us who are in very real pain and torment but I loved that O’Sullivan takes each one of her patient’s ailments seriously and compassionately, ensuring all the relevant boxes are ticked before suggesting that there might be an alternative explanation for their symptoms.

Would I recommend it?:

But of course!

Star rating (out of 5):

four-stars_0

It’s All In Your Head: True Stories Of Imaginary Illness by Suzanne O’Sullivan was the forty-sixth book in my quest to conquer Mount Everest in the Mount TBR Challenge 2018!

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Personal Post – Blogging with Fibromyalgia

Published January 29, 2017 by bibliobeth

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Image from http://www.washingtonarthritisrheumors.com/medications-in-fibromyalgia/

Hi everyone, hope you’re having a lovely day! I’ve been meaning to write a post like this for a while but I’ve only just worked up the courage to do it. If you’re not into personal posts and are only here for the books, you can skip this I honestly won’t be offended. But if you’re interested…. if you’re a regular visitor to my blog you might wonder why I post so erratically – sometimes I can manage every day for a week, other times you may not hear from me for ten days? Well, unfortunately, just over six years ago I was diagnosed with fibromyalgia, chronic fatigue syndrome and hypermobility and it has changed my life completely.

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Image from https://www.mesupport.co.uk/index.php?page=fibromyalgia

How can I describe fibromyalgia? Well, there’s a few choice words I’d LIKE to use, but I’ll keep it clean. Fibro is like a beast inside your body, constantly gnawing away at you, giving you no rest or comfort day or night. But less dramatically… fibro is a chronic illness with an unknown cause (as yet, although there are a few theories). It causes pain in many different regions of the body and comes with a host of different symptoms, not all of them I have but I’m unlucky to have a good chunk of them.

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Image from https://uk.pinterest.com/pin/569142471631041189/

Some people say there’s over sixty symptoms, some over one hundred. Basically, every thing that goes wrong with my body is explained by my doctor as “my fibro,” which can be kind of frustrating. How has it changed my life? I’m not the same person I used to be. I used to be really active, energetic, going to spin classes at the gym and loved socialising with my friends pre-fibro. Now, the only kind of exercise I can cope with is walking (20 mins tops), I can’t stand for long periods of time, I’m constantly beyond the usual level of tired and I’m in pain every. single. day. And social life – are you kidding me? I’m currently managing to work full-time as a biomedical scientist and I’m finding it really really tough. Many people with fibro either can’t work at all or can only work part-time. God knows how I’m doing it!

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Image from https://uk.pinterest.com/pin/477522366716874975/

One of the hardest things about fibro is when it affects my reading/blogging. I’ve got a humungous back log of reviews from literally over a year ago and when I’m feeling particularly bad, there’s no way I can sit down with my laptop and do a post. My brain and body just won’t let me. I am trying to make positive steps though – like my mini reviews, to catch up on that backlog which is working really well so far!

I’ve always been introverted, that’s for sure but I was just gaining a bit of confidence in myself before fibro hit which is a shame. Now I question everything – my work, friends, blog posts etc. Fibro really affects the way I speak and sometimes I really struggle for words or get them in the wrong order which makes me a bit scared and then I panic when I talk to people and feel the old “fibro fog,” descending which of course makes it worse!

I really am trying to stay positive about the whole thing and when it’s been six years… you kind of get used to it believe it or not! I just wanted to explain to any readers, publishers, authors others who are curious why I might be a bit slow at getting your reviews up or your books read. I am truly sorry and am trying my best, I absolutely love what I do and if I’ve agreed to read your book, trust me I WILL read it. (Failing that, if it’s been a year, maybe you should give me a little poke and remind me as my memory nowadays kind of sucks!) 😛

If you’ve read this far, thank you so much for reading/listening to my bunch of nonsense, it feels better just to get it out there. Thank you once again to everyone who comes to visit and reads my reviews, I honestly appreciate each and every one of you and long may it continue!! If you have any questions (or are a fellow sufferer yourself) I am happy to answer them, available in the usual places – here in the comments section, on Twitter @bibliobeth1, on Instagram and on Facebook. Take care everyone!

Beth xxxx

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Image from https://nl.pinterest.com/explore/depression-tattoo/