CFS/ME: why the internet can be your best friend or your worst enemy

Hello wonderful readers and welcome to my blog about my current experience of having ME/CFS, I want to assure you this blog will not be about doom and gloom. This blog is for people who are committed to FULLY recovering, as I am!

So I will be presumptuous here and assume that you either have been diagnosed with CFS (I could type the ME part every time but…) or that you know someone close to you has been and are doing your research.

I have started this blog because after 8 months of being extremely fed-up I think it’s time to do something positive with my time. ┬áIf sharing some of the mistakes I’ve made and some of the successes I’ve had during the initial stage of my diagnosis might help someone else then I think it’s worth doing.

So let’s dive in with my first big mistake: (and the reason I’m going straight in is because you’re probably doing this right now)

The internet is full of horror stories. Stop reading them. Stop watching them. Stop believing them. STOP GOOGLING IMMEDIATELY. I mean it. If you have any posts or threads open right now, get x-ing and close them for good.

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We have all done it and I was particularly guilty of this during the first couple of months of my illness. When I was initially diagnosed with Post-viral fatigue (please see ‘My Story’ for more details) the first thing I did was role up my sleeves and get a-googlin’. Well thanks me, because I’m fairly sure all the things I read have managed to imprint themselves into my brain and caused this thing to go on much longer than it may of done.

Lets be honest, everyone who is still unwell is searching for the miracle cure and in doing so we accidentally see the videos about the woman who has been in bed for 20 years and still lives with her elderly mother (but can still sometimes go outside!). Well no offence to anyone who has had this illness for a long time, but your stories can be absolutely terrifying to anyone who is newly diagnosed. It’s incredibly hard not to look and these stories- something to-do with the psychology of not being able to look away from a car crash I assume.

Some of these things I read and viewed in my first few days and weeks of illness have really stuck with me and the more these things pop into your head the easier it is to believe that you are going to end up in the same terrible state.

Being a little further along now, I have found some wonderful recovery stories which have begun to restore my faith that I will not be spending the next 20 years in a state of extreme tiredness.

It is my personal opinion that all the thousands of recovered CFS sufferers don’t really want to spend all their time online banging on about it. They want to forget about it and get on with their lives! I know it’s really hard to imagine being better if you’re currently suffering, its something that I battle with every day. But I think once I have recovered I’ll want to put all this behind me and I won’t be scouring endless CFS threads to put my two-pennies worth in (I’m English)

Now in saying this there are some really wonderful websites which are full of recovery stories and positivity, so if you must google then make sure the word recovery is front and centre!

I just wanted this first post to be a shortie as we CFS sufferes don’t have the longest attention spans, in fact I expect most of you feel asleep three paragraphs ago. I hope you’ll follow the advice in this blog post because I really think its key in keeping positive and not going completely nuts!

I would advise trying to go a whole week without looking at anything inflammatory online, and just see how you feel! Don’t forget to comment and let me know how you’re getting on.

And just before you go, here’s a picture of a tiny kitten living wild and free… which I hope we all will be very soon!

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