This is a guest post by Dawn Hartley.

I’ve always been an average reader.

As a child learning to read, I didn’t have any problems, I wasn’t dyslexic or anything like that. I read books as part of my school work and always enjoyed going to the local library to choose a couple of books to take on the family holiday.

However, reading wasn’t something I would have included as a hobby or something that I enjoyed doing. The books in my family home were nonfiction books on steam trains or football, and belonged to my dad.

As I entered adulthood I would read autobiographies whenever I went on holiday—I have always been fascinated with people and their lives, so an autobiography was a perfect way to see beyond the celebrity face.

During my early twenties I discovered that there were many classic novels that I hadn’t read and my friends would speak about famous authors like they were best friends with them. The only other reading I did was reading glossy magazines such as OK! and Hello! plus some real-life stories in Take A Break.

I felt intimidated by the world of literature.

How my reading ability changed

It all started to change around 2013. I realised I’d often read the same sentences repeatedly. I could read the words and understand what each word meant but couldn’t quite comprehend the full sentence when it was put together. It was like a wire in my computer had come loose and the information wasn’t being transmitted properly.

It was around this time that I was suffering from fatigue that would creep up on me without any warning. it was like hitting a brick wall and not being able to function.

My body became sluggish and heavy, a feeling similar to walking through mud wearing a suit of armour. My brain felt slow and foggy, often struggling to find the right words to speak and concentrating was almost impossible to do.

After almost a year and several visits to my GP, I was diagnosed with chronic fatigue syndrome (CFS, sometimes called myalgic encephalomyelitis or ME) and discovered this foggy brain was a real thing.

It’s called brain fog.

It can affect your working memory, which is why it made it so difficult for me to read. After all, you need to remember the previous sentences, paragraphs, and chapters in a book to understand the story.

CFS is different to being tired. It is a tiredness that doesn’t ease when resting—it drowns the whole body, waking up as tired as when you went to bed. Many people have sleep problems such as insomnia.

The memory problems didn’t just happen when reading books or magazines—it would also make having conversations difficult due to having problems recalling the correct words or names—another thing that was frustrating as I previously had a very good memory.

Reading was just too difficult for me to do, so I stopped.

How I started to read again

By 2015 I was getting better at managing the CFS, but the all over body pain was getting worse. After many more tests by my GP, I was referred to a rheumatologist who diagnosed fibromyalgia—a disease very closely related to CFS that required me to rest even more and to learn how to use my limited energy.

This brain fog that I had been experiencing is also known as fibro fog. Many symptoms of CFS and fibromyalgia overlap and the only main difference is fibromyalgia causes wide-spread pain and CFS doesn’t.

There are many symptoms which include anxiety, depression, headaches, IBS, numbness in hands, arms, feet and legs.

During this time, I realised that I had missed reading books and decided to try listening to stories with audiobooks to see if I could follow the story without the added energy of reading the words.

I took a couple of audiobooks with me to listen to while lazing around the pool on holiday.

Unfortunately, I discovered it required the same amount of concentration and memory to follow the story (this may not be the same for everyone).

However, it did make me use my imagination more.

This seemed to light up something in my subconscious about storytelling.

While I couldn’t listen to a whole audiobook, I did find myself listening to lyrics in songs which, ultimately, are short stories.

Music was something that always bought me comfort and enjoyment.

You might think that because I wasn’t able to read stories that I also had problems with writing, but I didn’t.

Writing poetry is something that I have done since I was 14. I have always been able to express my feelings through writing, rather than speaking. Frustration was a word that I frequently used when writing.

I felt embarrassed that a five-year-old just starting school was able to read a story better than I could. I didn’t tell many people about my problem and managed to hide it well from others.

In February 2018, after selling my business and deciding on having a gap year with my husband, I decided that I was going to write a novel. Having never written anything other than poetry before, I knew this would be a big challenge, but I was ready for it.

In April 2018 I went to a workshop at the Nottingham Writers’ Studio and began to learn about writing. It resulted in me becoming a member of the Writers’ Studio. Shortly after, I began to write my novel.

April was also a special month for me as I decided to try and read a book again after five years of not reading.

I was anxious, but I made a promise to myself that if reading was too difficult then I wouldn’t beat myself up—I would plan on how I could read the book by pacing and resting.

How to get back into reading

Find a book that interests you

The book I chose to read was What Happens in New York by Kristina Adams.

The size of the book seemed achievable, the font size was easy to read, and the subject seemed interesting.

I knew if I was interested in the story, it would encourage me to keep reading.

I chose to start reading on a day that I felt less foggy and more positive.

When choosing a book for yourself, think about:

  • Is it a topic that interests you?
  • Is the font size readable? (Ereaders can be good if this is an issue as you can make the font size quite large.)

Be kind to yourself

Over the years, my symptoms of CFS and fibromyalgia have improved due to planning, pacing, and prioritising.

I’ve also done Cognitive Behavioural Therapy (CBT) for over a year—that made the biggest difference to me.

Thanks to CBT, I am able to give you the following advice:

  • STOP doing something because you SHOULD do it and do things you WANT to do
  • STOP saying ‘YES’ when you really want to say ‘NO’
  • STOP feeling guilty when you rest
  • STOP feeling embarrassed about your condition or the symptoms
  • STOP focusing on the things you CAN’T do and focus on the things you CAN do

Perfection only exists in our imagination and we use it mostly in a negative way, often to compare ourselves to people that we imagine to have a perfect life.

All of these things have resulted in me being a happier and healthier person.

I recommend reading a book called The Little Big Things by Henry Fraser. I was truly inspired by his attitude. It cemented my newfound belief in focusing on what you can do, instead of what you can’t do.

So, the next time you’re struggling with something, don’t feel guilty or embarrassed. You’re human—it’s perfectly natural for you to have good and bad days.

How to read a book

  1. Read the first paragraph or section
  2. Stop—take a break—perhaps a couple of minutes
  3. Think about what you’ve read
  4. Imagine the scene in your mind
  5. Check in with yourself—how tired are you?

If you are tired, stop reading, rest, and do something else until you feel better. This could be 10 minutes or 2 hours—there is no rule.

When you are feeling better, go back to the book and see if you can remember the part you read first before going on to read another section. Then, repeat the plan.

If you can’t remember the first part, wait a week and try again.

If you are feeling ok after reading the first section or paragraph, repeat the process over and over again.

There is no competition to be the fastest reader

The challenge is to simply read the book. There’s no deadline and no punishment if you don’t complete it.

It took me three weeks to read What Happens in New York, but that was ok.

Once I’d finished it, I couldn’t wait to buy the next book in the series, What Happens in London.

I took a break from reading for a week, and then started the next book.

What’s next for me?

CFS and fibromyalgia are still part of my life—maybe they always will be. However, I now have the skills to manage the symptoms better.

Since April 2018, I have read eight books and I am currently on my ninth, along with writing my own novel.

During this time I have discovered so much more quality in my slower world.

I am grateful for the smallest of things that I may not have appreciated pre-fibromyalgia.

I am aware of the different types of pain, whilst also being aware of the different types of rain, and how they feel on my skin, how the rain drops smell differently depending on the type of rain it is.

In learning to look after myself better, I have learnt that I can help others to look after themselves better too.

Meditation, writing, and CBT have all been a huge part of learning to live differently.

How to get back into reading

Over to You

I would love to hear from anyone who has experienced something similar, or anyone who is going through the toughest parts of either CFS or fibromyalgia.