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!

Getting Diagnosed with CFS/ME

Assuming you've had people disbelieving you for years and you are close to giving up.... Or it's new and you aren't sure how to go about getting help....

STEP 1: KEEP A LOG OR LIST OF YOUR SYMPTOMS

Doesn't have to be fancy. Just what happened, when and how it affected you/ your life.  Use this when you go and see your GP - take a copy to give to them.

STEP 2: SYMPTOMS - NICE GUIDELINE CG53 CFS/ME 

The Chief Medical Officer believes ME/CFS exists. That it is real and needs treatment.  Your GP is supposed to follow the NICE Guideline in treating you - so it's worth knowing what it says!

Guideline section on Symptoms HERE

What is CFS/ME and what are the symptoms?

Big topic. Causes strong reactions. Best place to start? probably not. But here we go...

This blog is about handling the daily practicalities of living with CFS/ME, so, ignoring the politics for now, but :

What's in a name?

CFS = Chronic Fatigue Syndrome
ME = Myalgic Encephalomyelitis

Some believe ME and CFS are totally different illnesses with different symptoms. Some think they're the same or similar. Others are waiting until the causes can be identified (including me).  The general consensus seems to be that there's a whole range of causes, causing a group of symptoms that sufferers can have - but they can't be reliably diagnosed & fixed yet like something relatively simple (ie a broken bone) can be.

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!