A copy of the fatigue book by lydia rolley cover on a beige watercolour style backgroundIntroduction to The Fatigue Book by Lydia Rolley

Welcome to this blog post on The Fatigue Book. The full title is The Fatigue Book – Chronic fatigue syndrome and long COVID fatigue: Practical tips for recovery by Lydia Rolley. Published in October 2022 by Hammersmith Books, my thanks to the publisher for a copy in exchange for an honest review. It’s available as both paperback and ebook.

cartoon of a woman in a wheelchair with a speech bubble either side. One says "my fatigue" the other says "the fatigue"
Language matters: if you don’t want your illness to become your identity adjust how you speak about it

Fatigue in ME and long COVID

The fatigue felt in ME and long COVID is different to normal tiredness, or even exhaustion. It’s a hugely debilitating condition. It can affect cognitive function, physical energy levels and the ability to cope with emotions or socialising.

As someone with ME, I am no stranger to crippling fatigue. Before I was sick, I was an RAF reservist. I completed a 50-mile road march and unfortunately, I missed the training beforehand. It was tough! Afterwards, 2 of my toenails fell off and my muscles were so sore I couldn’t climb stairs for 5 days. I thought that was fatigue. I was wrong.

Today I struggle to walk 20 metres. On a bad day, the pain and fatigue make the six steps from my bed to the bathroom feel like a hundred road marches. The fatigue affects my body (muscles, heart rate, digestion etc), mind (difficulty concentrating, overwhelm from sounds and lights) and emotions (not enough ‘bandwidth’ to cope with strong emotions). Clearly, I need all the help I can get for managing fatigue!

The Fatigue Book Review

I’ve read quite a lot about managing fatigue. One of the main skills needed is pacing. Pacing is very difficult to do well. So, I was keen to read more about fatigue management and how to achieve the difficult balance between doing too much and too little. Lydia Rolley’s book is excellent for this, and I highly recommend it!

The book is designed for people with fatigue because there no long chunks of text. Most of the advice (presented as tips) covers no more than two pages, key points appear in boxes. As soon as I saw this, I knew it had been written by someone who understands what it’s like to try to learn and remember new information with brain fog.

a slide showing a photo of two street signs with the word "choice" on them. Text above the photo says: illness limits choices, learn to spot the smaller choices and make them consciously
Severe fatigue can be extremely limiting. Regain a feeling of control by making conscious choices where you can.

Content

The book contains 100 tips on dealing with fatigue. They are grouped thematically into 11 chapters covering areas including: mindset, sleep, energy, pacing, relationships etc. The tips are indexed and there is also a general index plus reference list.

The advice is thorough, insightful, and practical because it’s written based on the author’s long experience as an occupational therapist. I’ve been sick for 5 years and have a science background, so I thought I knew quite a lot about managing ME, but there was plenty of new information for me and some very beneficial advice. I particularly like that the author creates space for the reader to reflect on each tip. It isn’t just a case of ‘do this…’ or ‘don’t do this…’. Instead, there are questions and little exercises for the reader to think about how they might better tackle the area themselves. There are great resources to help, such as activity diaries, flow charts for pacing and more.

Style

The style of this book lends itself well to being read in bitesize chunks. Even for those with severe ME or long covid. If you’re struggling and can only read a little at a time, you can aim for reading just one tip per day, or a couple a week. Each tip has the main body of text, which has details about the tip, as well as a grey summary box. So, if you’re really struggling, go for just the grey boxes. I’ve bookmarked all the tips which I think would work well for me, or which I need to do better. This helps me to remember which ones to refer back to often and remind myself.

The language is very simple and easy to follow. There’s no unnecessary detail or jargon. Each tip has a little proverb and/or prayer associated with it. I’m not religious so I was ambivalent about the prayers, but I do really like the proverbs. There are also great illustrations and diagrams throughout, which is not only visually pleasing but also helps to demonstrate some of the points.

The advice is both practical and comprehensive. These are real tips which can make a difference and they don’t just cover the basics. I was particularly impressed that secondary issues are also covered (e.g. relationships, managing comorbidities etc). There is also advice for friends and family members. Some tips are easy to do (tidy your space) whilst others harder (adjust your mindset). As they cover different areas, you can tailor the advice to what you need help with. That makes this a hugely valuable book!

a photo of a person in a wheelchair near the sea. They are spreading their arms wide. Above the photo the text says: Grow bravery - bravery is not the absence of fear, it is action in the face of fear
Fatigue can stop us from doing things we were previously able. As we recover it can be scary to try those things again.

Cover Synopsis for The Fatigue Book by Lydia Rolley

The Fatigue Book is a practical guide to managing chronic fatigue, whatever its cause, in order to enable recovery at a pace that works for the individual. It outlines 100 proven fatigue management tips drawn from the author’s personal and professional experience and is suitable for people of all ages affected by long COVID, CFS/ME and other chronic conditions, and for their family and friends. Whether someone is at the start of their recovery journey or has been doing this for some time, there is clear, practical advice based on a self-management approach that applies the principles of Pacing and Activity Management (but NOT Graded Exercise), as recommended by the latest NICE guidelines.

Lydia Rolley brings her unique joint training and experience in occupational therapy and psychotherapy at a specialist NHS Fatigue clinic to provide an approach that recognises physical, mental and emotional/spiritual needs suited to the individual. Each chapter includes a range of Tips from which to choose plus Food for thought, Pause, and Mind, body and soul. Essential text is highlighted so that if you struggle with brain fog you can focus purely on that in the early stages of your recovery.

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