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rosyposy
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« on: June 13, 2017, 08:35:54 PM »

Hi everyone, I was recently diagnosed with CFS and am pretty devastated tbh, even though it wasn't a surprise. I always find it helpful to do the talking thing so here I am.

Rose
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roger
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After 12 years of trying, I'm now A OK


« Reply #1 on: June 14, 2017, 05:26:52 AM »

Hi Rose, and welcome to the forum.

Yes, talking is good, so talk away  smile

If anything on the forum raises questions in your mind, please do raise them. We're friendly and we're here to help when ever we can.
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'Nothing is, but thinking makes it so'
neptuno
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I'm a CFS sufferer...


« Reply #2 on: June 14, 2017, 03:32:26 PM »

 s_hi

Newly "diagnosed" is not only a relief but opens up a whole new world of best ways to manage your symptoms. That's a good place to start and also where you will find lots of info on here. I'm sure you'll have questions...I bet I've asked most of them no matter how "silly" they're all valid!

Rule number one : rest !
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rosyposy
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« Reply #3 on: June 15, 2017, 12:21:57 PM »

Thank you for the welcome, Roger and Neptuno!

Neptuno, I'm sure many people find being diagnosed a relief, but I don't. I'm actually pretty devastated. I was already pretty sure I had CFS but having it diagnosed was a massive and horrible blow - quite unexpectedly; I'd assumed it wouldn't make much of a difference to me. I have depression too, and have had it for a long time, so that probably doesn't help  rolleyes .
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roger
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« Reply #4 on: June 15, 2017, 12:40:46 PM »

Hi Rose,

It IS 'a massive and horrible blow', and I understand that where depression is involved that makes matters worse. But whenever you feel able, and this probably won't be very soon, the need is to take ownership - not of the 'title' you've been given, but of your recovery - doctors don't own in, nurses don't own it, and physios don't own it, YOU do. That's the first step. Instead of dwelling on the many negatives involved, start to dwell (again when you feel able) on the steps you can start to take, steps that will at best lead to recovery and at worst lead to management at a level that will lead to a life well worth living.
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rosyposy
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« Reply #5 on: June 15, 2017, 01:24:58 PM »

Thanks Roger - you're quite right, of course. I'm sort of trying to make a start on the taking ownership of my recovery thing as a quite separate entity from accepting the illness, if that makes sense... Acceptance-wise, I'm still very much in the kicking and screaming phase!
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roger
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« Reply #6 on: June 15, 2017, 02:14:12 PM »

Yes that makes sense, Rose  smile

And the kicking/screaming thing is normal. At some point you'll think  'censored this, I've had enough' and that's when your healing starts.

I'm going to lay myself open to ridicule and abuse now but, hey, I can live with that  smile. To my mind, at the physical level, I know of only two causes of ANY physical chronic illness - deficiency and/or toxicity. On that basic, the questions to ask yourself are 1) Why am I deficient and 2) Why am I toxic? Again to my mind, working on those questions is your starting point.
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neptuno
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« Reply #7 on: June 15, 2017, 06:04:27 PM »

Rose, for me the relief was knowing it wasn't all "in my head" that my symptoms are real and many other share similar symptoms that can be managed. It's a very steep learning curve and I have been so grateful for the invaluable support I have received for good folks on here (you know who you are).

DR Myhills book "its mitochondria not hypochondria" is a brilliant place to start  Smiley
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