Stuart Aken: Illness

Sunday, 12 October 2014

From ME to You, With Love, by Louise Harding, Reviewed.

A recovering ME/CFS sufferer, I read this book as research for a book I intend to write myself. It proved very illuminating in so many ways. There are differing degrees of this pernicious and horribly life-limiting condition and most of them are represented within the pages of this book.

Consisting of letters written by sufferers, carers, friends, family members, medical professionals and recoverers, it spans the wide panorama of experiences well. There is bitterness, hope, wonder, anguish, love, misery, pain, humour, anger, frustration and joy within these pages. There are examples of frustration with the ignorance of both the medical profession and the general public expressed effectively by both sufferers and carers.

Some of these accounts will make you cry, others will have you smiling, yet others will make you feel like shouting out loud, swearing with the frustration of it all. It’s an emotional roller-coaster, and I make no apology for that cliché, as this condition is one of difficult slow climbs followed by devastating drops.

If you’re s sufferer, carer, friend or family of someone with the condition, but, most of all, if you’re a medical professional, you should read this. It will educate, and hopefully squash those damaging and ignorant prejudices that blight the lives of so many who battle daily with this condition.

Well written and thoughtfully compiled, it contains the words of people who know what it’s like, who have lived with or are living with this devastating complaint and its multiple consequences. And, if you’re just an interested member of the public, wishing to expand your awareness, this is definitely for you. You’ll see that I’ve used the word ‘frustration’ repeatedly in this review: it’s a word that sums up one of the most commonly experienced emotions of sufferers and their carers. Consider: this is a condition that is generally experienced by those who are most active in society. Imagine, for a moment, the consequences of having such activity suddenly removed, and you might start to appreciate why frustration is such a universal experience.

I’d like to see everyone read this book. I know that won’t happen, but I hope that many will make the effort. You’ll find it worth your while.

Thursday, 1 November 2012

What to Do on Those Days the Brain Refuses to Function?

Lobes of the brain, color-coded. (Photo credit: Wikipedia)

I suspect it happens to us all from time to time: we have a day when the brain just refuses to do what is required of it. Today has been such a day for me. Why? That’s easy. I’m suffering some sort of stomach bug that has meant I’ve needed to be close to the bathroom all day. I managed a swift walk around the block for fresh air and exercise but that’s all. Now, I’ve had this sort of event before (as a recovering ME sufferer, my immune system isn’t what it was and I’m a bit vulnerable to those idiots at my day job who fail to wash their hands after a visit to the loo: such thoughtful folk, eh?)

Generally, the effect is to deaden the creative and constructive part of my brain so that everything becomes a real effort; like trying to think clearly through clouded water. And, generally, my response to the physical results of such infection is to starve myself for 24 hours, consuming only apple juice warmed and sweetened – a trick I learned from a doctor years ago, which seems to work. But, of course, the energy levels suffer as a result and anything that demands extra effort is just a little too much.

So, what to do with the time? I suppose I could just give in and rest for the day. Read, perhaps? But I’ve been busy recently, devising and publishing a new book. And that means the emails have piled up. So, I spent a good part of the day dealing with those. Most of them are relatively undemanding, so not too difficult to make progress through the numbers and clear the decks for tomorrow, when, hopefully, I’ll be able to do some writing. I also had the basic themes of a review worked out in my head, so I was able to put that together and stick on the blog and Goodreads.

And that’s really what this piece is about. How to make the best of whatever situation you find yourself in. I could’ve given up and spent the day in bed. But what would that have achieved? I’d have been bored to tears and all those emails would still have been waiting for me in the morning to disrupt my return to normality.

I’m very lucky; years of writing have made it relatively easy for me to respond in plain language to messages. As long as I don’t have to get too creative when I’m in this state, I can generally manage to string some words together. But I couldn’t do anything that required the imagination and sheer concentration necessary for making a story. So, I do what I can do and hope to make the time that follows the incident more productive as a result.

I’m curious about how others deal with this sort of brain dulling. How do you cope? What do you do? Let’s share our experiences in the hope someone else may pick up a tip to deal with a similar situation when it creeps up on them.