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The CFS is not ME row

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Before I joined Twitter I didn’t realise that there was quite a row going on over CFS and ME.

Now that I’ve been on twitter for a while – I have seen so many tweets on this subject.
Eg :
Your CFS isn’t as bad as our ME
We have ME and its more serious than your CFS
If you had ME and got better – then it wasn’t really ME in the first place. And maybe “just” CFS.

Etc Etc etc . . .

And I just want to say here – I am sick to the back teeth of all this.

My diagnosis was CFS.

  • It was what the GP called it on the day – after the other stuff had been ruled out.
  • It took a struggle of more than 12 years to finally get a diagnosis at all.
  • I have a big list of symptoms to deal with – luckily not all at the same time.
    (I listed them in an earlier post today for info.)
  • Frankly I don’t care if it is called CFS or ME. All I know is – it has been a very big problem in my life, for a very long time.
  • I also know I am not anything near as bad as many out there – who have a more severe form of CFS or ME.
  • I have met people with CFS who have been much much worse than me.
  • And I have met people with ME who were less affected and having a fuller life.
  • Some people with CFS have had loads of tests – some just a few.
  • Some with ME have had extensive tests – but also, some just a few.

I don’t think there is any “black & white” with this.

I do understand the reasoning for many people and charities wanting the name CFS scrapped – and I agree it does nothing to convey the seriousness of the condition. As people just hear the word “fatigue” and mentally dismiss it as not very important.

But I do feel that we should all be on the same side.
Whether CFS or ME.
I mean they are both bloody awful at times.

Surely ?

Any thoughts/opinions/comments very welcome.

My CFS Symptoms

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I decided to list my symptoms with CFS.   Not for fun (!) but for various reasons :

I’m sure there people out there who still assume Chronic Fatigue Syndrome just means that we get a bit tired. And get tired more often than average.
And therefore they regard it as not very serious.
But (unfortunately) there is much more to it – as you can see from this list.

It is rather a long list – and I realise that I have some symptoms now that I didn’t have eg. 6 years ago. I feel that the longer you have CFS and/or the longer you had to go before getting diagnosed – the more it may become “entrenched” or “ingrained” in you.
And all the harder to get rid of.
NB. This is just my personal opinion and not based on any medical facts.

But I also know I am very lucky in that my symptoms do fluctuate and I am not hit anything as badly as some who are classed as having severe CFS or very severe CFS. Or severe ME & very severe ME.
Plus in making this list I noticed that some symptoms I had quite badly years ago – I rarely get now, eg. IBS.  (= good)
But on the other side of the coin I have developed other new symptoms in recent years, eg. 21 – 23.  (= bad)

Anyway – here they are :

1) Flu-like exhaustion (no strength or power left)
2) Muscle weakness
3) Muscle pain (esp neck, shoulders, upper & middle back)
4) Stiff neck
5) Sore/stiff right arm and wrist
6) Headaches (more often & severe last year or so)
7) Weakness & lack of grip in right hand
8) Out of breath easy
9) Chest tightness or heaviness
10) Heart pounding/racing
(Pulse Rate always high : eg. lowest usually 80 – if feel well and am very rested. Can be much higher – eg. 141 the other day after having a shower.)
11) Blurred vision
12) Always thirsty
13) Memory bad
14) Often forget point I’m talking about mid-sentence
15) Find it hard to be concise – often go off on tangents
16) Cannot find the right words at times
17) Poor concentration – cannot focus on 1 thing at a time
18) Racing thoughts – all jumbled up/so many things that need doing/
19) Brain Fog – thoughts very slow, as if they cannot get thru,
20) Eyes get tired very easy
21) Cannot tolerate bright light some days (eg. from TV or PC screen)
22) Cannot tolerate noise some days or sudden change in noise levels (eg. different sound levels on diff TV channels)
23) Cannot tolerate moving images some days (eg. on TV)
24) Prone to getting cold easily (especially if overdue food)
25) IBS
26) Excessive sleeping some days

GPs treatment of CFS is . . .

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One of the main reasons I started up this blog was to get out some pent-up anger and emotions that have been blocked in over all the years. One area has been dealing with GPs and other health professionals.

Note :

I have removed this post now.  For a few reasons :

1) Don’t want to get struck of by my GPs surgery !
Although it would be good to find another more “CFS/ME aware” GP – I don’t have the energy or the time to do this. Not right now anyway.

2) I don’t want to cause any offence to the clinical phsycologist I was referred to for the standard CBT treatment years ago. He was very nice and easy to talk to, and certainly made me feel much better about myself at the time.  To that extent CBT did some good. On the emotional front.
But unfortunately was no practical help at all for CFS. (Which we now know is to be expected – as a phsycology-based treatment will not cure a physical condition/illness.)

3) I certainly don’t want to cause any offence to David Mickel in Elgin – who must be the best GP anybody with CFS or ME could wish to have. Having met him and knowing his sense of humour – I am pretty sure he would not be at all upset at my list of rants.  But as he is doing some GP work again now (as well as the Mickel Therapy) I decided to add this anyway.

4) Now that I have had my mini-rant and got it off my chest – I feel much better for it !

Brain Fog & Racing Thoughts

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A Wasted Friday

I am glad its Saturday.

Yesterday was a rubbish unproductive day!
Now I don’t obsessively measure my days in terms of “productiveness” in the way that I remember employers doing. But it was a write-off.
But unfortunately it hasn’t been written off in my mind yet and I’m still fretting about it.

This is why I’m adding it to my blog at this early hour on a Sat morning. An early hour for me at the weekend but my sleep pattern is “gubbed”.
Nb. I have borrowed this marvellously fitting word from a great blog called :
http://www.velo-gubbed-legs.blogspot.co.uk by Nasim Jafry. I hope you don’t mind Nasim?

Anyway the very poor summary of my work yesterday consisted of :

a) One letter which took me a ridiculous 2 hours to type ! Yes – that was it.
(I changed the content and tone of it so many times.)
b) Plus a lot of thinking and mulling over property & tenant problems – but no actual “doing”. About 3 hours spent (wasted?) here.

All the usual CFS or ME problems were present.
But I seem to be finding that the “neuro-type” symptoms have been getting worse and worse for some time now. Certainly a few years at the least. And even more so over last 12 months – really hindering me.

For the benefit of non CFS/ME sufferers : by neuro-type symptoms I mean :

Brain Fog :
Cannot think clearly, if at all. A bit like your thoughts are trying to get thru mud or treacle. And it is all so very very slow . . . Plus trying to find the right words can be hard too. Or to finish the point you are trying to make. (Or even work out what the point is . . ) Forgetting the point of what I was talking about mid-sentence is common. A total nightmare if in a phone call – but not easy either when a letter or email.

Hyper & Racing Brain :
Dozens of thoughts racing about at 100 miles an hour, conflicting thoughts, decisions, changing mind, more frantic thinking, cannot decide what best to do, or what to do 1st, or in what order, etc. Just unable to think straight or focus or concentrate.

Out of these 2 symptoms this 2nd one for me is probably the more exhausting as my brain feels as if it has run a marathon afterwards. If that makes sense?
Often I still have to later change what I have done or decided – as it can seem obvious (when rested) that I have made a bad decision. Or I have just confused everyone – including myself !

The headaches are so bad too. They come often with quite an intensity. Plus I find more and more that I cannot tolerate even looking at a PC screen for long. Or a TV screen. I seem to be getting more and more sensitive to colour, moving images on TV, sound, etc.
Which isn’t helpful at all.

Anyway by 5pm I just had to give in – and took painkillers and went to lie down in my bedroom next door to my office. With the black-out blind pulled fully down. Had planned to get up after a few hours, but ended up getting into bed and staying there for 10 hours – until 3 am.
I was just too exhausted to get up before then and my brain felt burned-out as I was still thinking about so much stuff while in bed.
But hunger finally got me up and went down to kitchen for something to eat.

Not the way I would choose to spend a Friday night.

Just realised this is another long post. (Have no idea how I manage on Twitter . . .)
And it is rather moany again. I admit I was feeling a bit sorry for myself. Although now that I’ve typed it I feel much happier.

Note To Myself :
Some Aims : do shorter posts and more fun ones !

CFS – how long ?

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In Jan 2008 I met a doctor in Elgin (David Mickel) who asked me how long I had been suffering from CFS.
I didn’t know the answer – it seemed like forever.
He then turned the question around to :
“when do you last remember feeling fully well” ?
And that was easy – the mid-1980s. Maybe the late 1980s at best.

Quite a long time ago then . . .

Its funny how it can be easier to remember a “feeling” rather than precise details. And when I thought back to how it felt when I was fully well – the time/place etc all came back to me easily without having to think about it.

But my story is not unusual.
Throughout the 1990s I sort of managed but quite badly at times. And it got harder and harder as the years went on. Especially at work.
Eventually diagnosed late 2002 or early 2003.

My CFS did, and still does, fluctuate quite a lot.
And I know that I am actually very lucky with this. As it does allow me to do things and have a life. Even if quite a small life at times.
And although it may feel “severe” to me sometimes – I think it would more likely be classed as mild to moderate CFS.

Need to “Get It Out”

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I have decided to start this blog to write about my experiences of living with CFS for a long time. Partly to spare my husband and friends from having to listen to what probably sounds like a lot of moaning and whining. And also to de-stress myself and “get it all out”.  For a long time I have thought I would like to write a book. But this could take years – and I need to start writing now – to prevent me having a stress-induced nervous breakdown !

My thoughts are not really in any logical order – so my posts will just be pretty random. Of experiences and memories both recent and going back over the years.  And I would love it if people with CFS or ME would read it – as well as non-sufferers, friends, etc.  But even if nobody reads it I don’t really mind. As I have to do it for myself – to start to get all the anger and frustrations of the last 20 years or so out of my system.

But its not all going to be negative stuff – honestly – there will be funny stuff too !  And though I may mention my property work from time to time – it will not really be about that.  I plan to start a different blog about that.

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