TED talk on ME by Jenn Brea

It's nice and easy to listen to, she has a lovely gentle voice, and no applause (they waved instead) cos she's noise sensitive. It did make me cry when she got to various bits, especially about people not being who they were, but well worth a watch.

If you aren't up to moving pictures, there's a transcript. There's also annotations, and she has a website with lots of info/ support links on it.

The TED Talk is HERE

Some thoughts on Pain

Note: This is draft, I'm still working on it. But I've added it cos today I've come across 2 people who might find it helpful. Pictures and spell check and tidying up for making sense will happen eventually
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Pain is something I never really thought about before I got ME/CFS. It was something that happened only at specific times, like bashing my elbow or falling off my bike or my pony as a child. It had an identifiable cause and effect (I bang my elbow is the cause, with an effect of pain where I banged it) and was real in that it was related to some specific visible damage to my body, and acute, in that it hurt, then it healed and decreased accordingly.  In short, basic over the counter pain killers worked.

Then from around 2005 onwards I was assailed by different forms of pain. The first being random pains that either had a specific origin say my leg or arm, but no apparent cause (rather like those mystery bruises we all get sometimes, they're there but we don't remember walking into anything.)

All that 'giving up' and doing things differently

Back in 2007 when I was diagnosed, I ended up on the PACE Trial, randomised onto the Cognitive Behavioural Therapy course of treatment. The therapist was a nice enough chap, except for his habit of asking me a question, me answering and then him keeping asking what was behind my answer.  He kept doing it despite us both being flummoxed, as, seriously, I'm just NOT that deep a thinker! There's nothing deeper in my emotions than my first response, I'm really very shallow!

Anyway, one rather more useful repetition of his was - How can you do things differently?

To continue having interests in life, but that don't eat so much energy (mental and physical).

It's a small question. But a very useful one, whether you're mild, moderate or severely affected - because everyone who has this illness, they have to 'give things up'. It can be a 'little' thing like walking instead of taking the bus, going out and socialising less often, or a 'big' thing like being able to wash themselves or go to the loo, have a shower or even eat & drink.

Often it's a relentless succession of giving up. Within a matter of days, weeks, months or years, one ends up having 'given up' so many things that it feels like there's nothing left.

Belleville Rendezvous animation - can't cycle? watch cycling instead...

Symptoms 1: Nausea

Nausea. Ick!  According to the NHS - both acute & chronic nausea are as debilitating, and should be regarded in the same way, as pain.  There are prescription drugs to help with both being sick and also feeling like you're going to be sick - I've found they have side effects that are as tiring as the thing itself, so I don't.  But it's worth working your way through those available with your GP - if you can face it.

Hopefully this won't gross you out too much - I've tried not to be graphic!  If you don't want to know about my own personal nausea hell, skip the next few paragraphs and go straight to the Fixes for Nausea heading.  I live by myself, so all my ideas involve having to cope without anyone else being able to run around for me.

Time Wasting 1: Audio Books

One of the hardest things about living with ME/CFS, especially now it's so severe is filling the endless hours of being awake when I'm not up to doing anything active.  Over the years I've compromised and given up so much - there's not much left and being brutal: eating, drinking and going to loo only fills so much of the day!  I've been finding alternatives to distract me & fill my time this year - this randomly occurring series of posts will cover what I've tried (with varying success but hey, you gotta try something new to see if it works!)

WARNING: Many of my time wasting activities use up a LOT of internet broadband time.  Make sure the package you are on has enough capacity and you're not ending up with an unexpected bill!  Often if you upgrade BEFORE they issue you a bill for your overspend, they don't actually make you pay the extra, but check your payment date before you exceed your allowance - but not always!

Another blog? Are you mad?

Yes.

Seriously, I know, I have 2 already - Click on the About Me in the sidebar to go to them, not that I update them these days.  Anyway...

Because I'm ill. More ill than I've ever been before, with something that they don't know what causes it, nor how to fix it.

If I held grudges I'd be being very grumpy for believing the 'if you follow our guidance you won't ever end up in a wheelchair' (then my biggest fear). But you know, can't fault them, they were right - I followed the guidance, I still got ill, but it's true, I'm not in a wheelchair, I can't sit up for long enough and have no energy to push it! (gotta take the humour where you can!)

What do I have? Call it what you will - it's just a label for identifying what they can't fix - Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Yuppie Flu.  For years it was moderate and I hid it as much as I could in case it affected my work prospects: now it's severe, I don't see the point of hiding it any more.

So why this blog?

To help others by sharing the stuff I've found out since I was diagnosed in 2007.  And particularly since I suffered a major relapse in the spring of 2013 - it was a time of fear and distress and terror for me and my family.

And being selfish, I'm a bit fed up of typing out the same old advice on my own personal experience on various forums when people ask what are essentially very similar questions.

What will the blog do?

It's going to try and bring together links and information on areas that may be of use to the terrified or just sheer too knackered to look for themselves so that they've got one place to go to (once or repeatedly). In easy to read and understand chunks. Because hey, I KNOW how hard it is to concentrate!

There's going to be an INDEX and also sensible TAGS to make it easier to navigate.

Feel free to copy & paste the links if you think it would help - if you copy & paste any text, please make sure that you CREDIT the original writer of it!

Comments, suggestions, bouquets & brickbats welcome!