Why I Read, the hope of escaping the purgatory of ME

I thought I would write my first post about why I read, so that you might know a little more about me and my motivation. Like many people, I read to escape my reality; the purgatory in which I exist. This is quite a long post, but for me it’s quite a big story.

As a research scientist I would spend most of my time reading scientific papers and reports, travelling the world to conduct fieldwork and experiments, and lecturing and supervising students. In my spare time, I was a reservist in the RAF and enjoyed reading (usually during a free weekend or when travelling). Outside of academic texts or current affairs, I devoured thrillers, suspenseful courtroom dramas and literary fiction with an insatiable appetite.

When life changes because of an event like an accident, there is a time point, something to fix on, a before and after, something to blame. I developed a life-changing illness, but it didn’t happen overnight, it crept up insidiously and unremittingly. I saw my GP about my symptoms and then several specialists. I went from being disproportionately tired after going for a pizza, to being so weak and in pain that I couldn’t lift my head off the pillow or a fork to my mouth. I was diagnosed with severe ME (Myalgic Encephalopathy/Encephalomyelitis also known as CFS, although the nomenclature is contentious), confirming that life as I knew it, was over. ME has milder and stronger forms, but for those with the more severe form, their quality of life is abysmal, lower than many cancers and heart conditions (obviously, this is not a competition anyone would wish to win).

Becoming bedridden causes your world to both shrink and magnify, I felt like the protagonist in my favourite novel, Alice in Wonderland (but without the curative magic biscuits). My world shrunk from the whole globe to one bedroom, whilst stimuli (lights, smells, sounds) became intolerably magnified and the smallest thing like a clothing seam caused unbearable discomfort. I wondered why after a year, a lot of my friends and colleagues hadn’t seemed to notice that I’d fallen off the face of the earth (then I discovered #millionsmissing and realised I wasn’t alone in being ‘forgotten’). Of those that did notice my absence, many didn’t want to keep in touch once I’d explained what had happened (ME isn’t contagious, but sadly neither is compassion). Invaluably a couple of friends were willing to patiently keep in touch and visit me at home for the 20-minute chats which I can manage most months. They remain a lifeline. My boyfriend of 18 months said he wanted to split up, emphasising that he’d still support me as a friend. I’d known him for 12 years but didn’t hear from him again.

I felt the darkness of despair engulf me: what is the point of such an existence? ME is an illness for which there is no cure and little effective treatment (so it’s a minority who make any recovery).  Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University, captured it well when he said “[CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” Who would willingly endure that? People do die from ME/CFS itself and some choose to end their suffering themselves, the cruel irony being that those most severely affected probably wouldn’t have sufficient energy to take their own life.

I was determined to get better, but it isn’t a question of determination; positive thinking helps but it’s no substitute for reliable treatment, lesser still a cure. I followed my medical teams’ advice to the letter and I clung onto a quote from Maya Angelou:
You may not control all the events that happen to you, but you can decide not to be reduced by them.”
There might not be a way out of my diagnosis, but perhaps there is a way out of the darkness. An important part of managing ME is finding less-taxing activities which bring pleasure, for me reading seemed the obvious drug of distraction.

Trying to read with severe ME is impossible. This excellent article by Isabel Walter explains exactly what it’s like to try. I missed reading terribly, the chance to escape my sick bed which one of my friends described as ‘prison’. In civilised countries, prisoners know what crime they’re accused of, and the length of their internment. I do not. So, I liken it more to purgatory, because I’ll spend an indeterminate amount of time here and I may recover somewhat, or I may not. I yearn for the heaven of milder ME and a ‘relatively normal life’ and try to remain hopeful that one day it may happen.

I followed the advice of my hospital team (consultant, physiotherapist and occupational therapist) which involved: being very disciplined with pacing (even taking rest breaks during meals), gentle physio (all of which I did in bed), using energy for pleasurable activity, and taking medicines and supplements. After nearly two years, I started to get short periods where I could read something simple for a few minutes, so I picked up the children’s stories I’d read at school. I read a paragraph followed by an hour’s rest, some months later I could manage a page, eventually a chapter. The absolute joy of re-visiting Nina Beachcroft’s magical adventures is difficult to fully express. Although I was re-reading these stories and the chapters were short, I’d have to make notes of character names and plot lines, otherwise I’d lose the thread completely. I also noticed that there was joy to be found in little things in my day, although some days you had to search so much harder. My Mum, who had become my full-time carer, would put a flowering plant (unscented!) in my room, or a friend would send me some chocolate or a kind message. My Dad moved my bed near the window so on my worse days I could watch the passing clouds and birds. These little things were such big things to me and being so sick made me appreciate them far more than if I’d been well. I realised that probably the little things had been the big things all my life, I’d just been too busy to notice.

I’ve since regained a little more functionality; I’m housebound but I’m able to read a little faster and absorb a bit better although many books still need character lists for the ‘getting into the story’ stage. I don’t believe this lessens my enjoyment of books, nor does it render my insights any less meaningful, than when I was a ‘highly functioning’ academic. It does mean however, that reading means much more to me than it ever did; there’s much more effort undeniably, but also so much more reward. It is one of my favourite treatments and constant sources of joy. I’m also reading much more widely now and although I no longer discover the world for myself, I do it vicariously through the words of others. When the pain is proving hard to bear, or I’m frustrated that I can’t even bathe without help, there’s always a book offering escape: I can be someone else and live the protagonist’s liberated, pain-free life, or I can empathise with a character who is struggling with their own battles. ME has robbed me of so much, including the one thing I valued above all: my independence, but it can’t take away my imagination or my love of reading!

For more information on ME you can visit the ME Association and for health equality for ME, join the global, grassroots network at ME Action

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26 thoughts on “Why I Read, the hope of escaping the purgatory of ME

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  1. This is an incredible story and I am so proud of you for staying strong and positive through the dark times.
    I am currently on the downwood spiral of a chronic illness although this isn’t by any means as horrendous as ME and at present I am still able to work (most of the time) and be independent. But on sick days, Reading is definitely a lifeline for me so I totally get it and can’t imagine how horrendous it must’ve been to not be able to read.
    I hope you enjoy building your blog – I will certainly enjoy following it.
    Much love,
    Ex
    (EDIE book reviews )

    Liked by 1 person

    1. Thank you for taking the time to read and your lovely comments. I hope you manage to get out of your downward spiral soon. Books are brilliant for getting us through the tougher times. All best wishes to you E ❤

      Liked by 1 person

  2. This is a very powerful post and I’m sorry to hear that your friends and colleagues weren’t there to support you and be there when you needed them. Positive thinking is a very powerful mindset and being able to escape into another world via a book is one of the best forms of escape there is.

    Liked by 1 person

  3. This post has touched me to the depths of my heart. Especially because I read it at a time when I could relate even better – I have been sick this week, and I haven’t been this sick in a while, because I started reading your post and had to put it away to read another day, and then I couldn’t come back for two days, because literally all I could do was lie in bed and listen to books on text to speech. So it’s like I could almost feel your words, and not just read them, when I finished reading the post today.

    I have been thinking about what you said throughout all of these days in between while I was ‘reading’ the post (or rather, while the post was on hold :D)… To say that my heart goes out to these struggles is not enough. I can understand it to some extent, cause I have wondered in these recent years whether I myself might have a very light case of CFS, cause whenever I look at the symptoms, they’re strikingly similar. But then I always cover my eyes and run cause LA LA LA I DON’T WANT TO KNOW… Ah, denial.

    But I also wanted to mention that lately I’ve been working on getting better too, and you know how traditional medicine seems to… sometimes even unable to admit you’ve got a problem, especially if you have a mild case (which is why I’ve never had it looked into) I have been working with this clinic though, purely work related matters, unrelated to my health, for the past few years, until this year… I finally realized that they probably can help me. And I tried it, and it seems it’s working. So I just wanted to mention to you to look into the term ‘endobiogeny’, cause perhaps it could help you too. It seems to be geared towards people with these ‘mystery’ diseases like CFS which traditional medicine just shrugs at, and is based on testing your blood and finding imbalances, and regulating those (so basically not taking care of the symptom, but the root of it). It’s the thing people with CFS, Lymes and other such things often turn to, when nothing else seems to help. I am by no means selling you anything cause I get nothing in return xD I just wanted to mention that it has been showing positive results in my fatigue levels and improving my unknown allergies of like five years. I know I have a very mild case, but you know. Just wanted to let you know because perhaps it might help. Although I was pretty lucky to run into this clinic myself, without even looking, because they’re the only such clinic not only in my country, but rather in my entire region of at least several countries. The origins are in France, so I don’t know, it might be available near you, or it might not. Anyway, if you want to ask me about this, just message me on Twitter or Instagram or anything and I’ll try to help. I know my advice might not be worth anything, but I still wanted to mention it on the off chance that maybe it could improve your quality of life. I’d always rather make a fool of myself when it’s for something like that 🙂 for me this information is worth gold, because it gave me back some of my life, and it is so new and little known that I can’t withhold it.

    Anyway. Gonna share this post! And also, don’t forget that I would still love to feature you in my monthly newbies thing – if you have the energy and will to answer a few short questions. I wouldn’t put any time restricition on it either, but just publish in the next one after I’ve received your answers, so no pressure! I just want to help boost your new blog 🙂 so if you’re interested, my DMs are open as well.

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    1. Hello Evelina

      How are you feeling now? It sounds like you’ve been really poorly so I hope you’re much better and fully recovered!

      Thank you so much for taking the time to read my blog and for your kind and generous reply. I’d not heard much about endobiogeny, but I have noticed a recent emergence of a ‘whole system’ approach in medicine. This makes perfect logical sense, after all the body functions as a result of inter-connected systems, so if one system is off-kilter then it’s reasonable to expect a knock-on effect on other systems.

      ME/CFS is a horrible illness and there is no diagnostic test for it, so it relies on a diagnosis of exclusion (ruling out everything else which could be responsible for your symptoms) this is easier said than done because there are *so many* other diseases with similar symptoms. I was praying that if I have to have a significant illness, please can it be something bad but treatable(!), but you don’t get to choose your illness unfortunately.

      I know what you mean about denial, especially when your symptoms are relatively mild. For months I kept thinking ‘oh it’s probably just anaemia again, I’ll eat more iron rich foods’ or similar. When I saw my GP she thought the symptoms were down to allergy so it took about a year before I was redirected to the correct specialist and all the while I was getting significantly worse until I couldn’t function. I will research endobiogeny, thank you so much for the suggestion: it’s always better to be told something even if there’s only a slim chance it will help, than not to be told at all!

      It’s so kind of you to offer to help promote my blog, thank you! I have been so humbled and moved by the book blogger community’s support, advice and encouragement, that I feel exceptionally lucky and privileged! It has some very special people as it’s members for sure. I will DM you in the next couple of days, it would be such a boon to be featured by you and I have already benefited so much from the advice on your blog. Thank you so much Evelina!

      All best wishes
      Bxx

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      1. I am still poorly haha 😀 but also working till like 7PM again cause I seem to be the only responsible adult in my company at the moment xD oh well. I hope things will get better soon. And I’m glad I’ve been able to help or motivate at least a little 🙂 when you DM me, send me your email address straight away and I’ll send you the info for the feature 🙂

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  4. Hi Bella, you did an excellent job of describing the truth of ME. Reading is a lifelong passion of mine and to have it so limited is distressing. Music too, I miss being able to put on my music at any time. I have to be very careful and know when auditory stimulation is too much (which is much of the time). Children’s and young adult books are a lifesaver! I am currently doing a slow reread of the Harry Potter books. Got to keep the dementors away somehow! Hope today is a gentle and low symptom day.

    Liked by 1 person

    1. Thank you so much Jule! I agree with you on the music front, I can’t listen to “new” music as it’s too much for my brain to process, occasionally I listen to an old favourite song but still find it tiring. A re-read of Harry Potter sounds like a great idea, the writing is so rich that even if you remember the overarching plot, there are so many new details to pick up on. Thank you, I hope you’re having a ‘spoonful’ weekend.

      Liked by 1 person

  5. Thank you so much for sharing & I’m glad you are again able to enjoy the escapism reading offers. I can’t remember where the following quote came from(almost certainly a book I’ve read), but it always stuck with me & these days in so true….,

    “We read to know we’re not alone”

    Liked by 1 person

    1. Thank you Chelle, that’s kind of you. That’s such a lovely and profound quote, more so because being housebound gets lonely, although I’ve made some great friends online who share my love of books. The escapism offered by reading is truly wonderful.

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  6. a wonderful post and struck a chord with me so much as a fellow M.E sufferer. The escapism of reading is what keeps me going on those days when the world seems like a very bleak place due to this illness and you have summed it all up so perfectly!

    Liked by 1 person

    1. Thank you so much for your kind words! And craven apologies for taking so long to reply; this post got a lot of attention which is great and I hope people found it helpful, but it’s also been a little overwhelming. I hope you’re having a spoonful weekend and still able to enjoy the escapism of reading.

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  7. Very nicely expressed. I’ve battled this for many years, ever since I had a two year bout of mono, thirty years ago. Until this past year I functioned pretty well (though in hindsight I see I was not managing wisely), by pushing myself and then crashing followed by aggressively resting. But then after a variety of physically and emotionally traumatic stressors, I ended up bedridden. I went from teaching advanced high school literature in a non traditional setting to not being able to read anything that took heavy concentration or processing. I’m so grateful every day that I’m able to read at all, as I’m now working my way through easier books and appreciating some of my favorite books from childhood in new ways. Secret Garden, Beatrix Potter collection, Louisa May Alcott’s books, etc.

    Liked by 1 person

    1. Thank you for sharing you story! I’m so pleased you’re able to revisit the stories of your childhood. Children’s classics are great! So sorry to hear you had to give up teaching. We have some commonalities, I too had mono (almost 30 years ago) and went through phases afterwards of ‘normal’ and then months of low energy. These past few years were very stressful and seem to have tipped me into severe ME. Hopefully one day, they’ll find the underlying cause and develop some treatment so that millions of others won’t suffer. Wishing you lots of spoons and pleasurable hours of reading!

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  8. This is an amazing and powerful post. Welcome to the blog-o-sphere (I know this is a few months, late but I still wanted to say welcome!!) Bella and it’s great to meet you! I’m glad that you’re slowly able to do more and use books to escape. I’m also very sorry that those who you thought to be your friends and close acquaintances left you after you became sick. I’m glad you’re still fighting and that you’re getting better, even if it’s a little tiny bit at a time! I can’t wait to read the rest of your posts ❤❤❤❤❤❤

    Liked by 1 person

    1. Thank you so much for your lovely message J R Lynn! I’m having a symptom flare at the moment so it’s very heartening to receive such a lovely welcome. It was very difficult to come to terms with developing ME but I’ve made some wonderful friends on bookish twitter and the blogosphere so count myself very lucky. It’s great to meet you and I love your blog, the way you structure your book reviews is so smart and it’s pretty too! Sending you lots of love and hugs

      Liked by 1 person

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