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Must break the Vicious Circle

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I hope this week is better . . .

Last week did have good and bad bits of course – no one week is all bad. But from Wed onwards I guess I had pretty much crashed again have had been exhuasted most days. Didn’t get any work done at all in the whole of last week – but I lost a lot of sleep (and energy) worrying about it. And with due cause . .
Plus I haven’t been outside the house since last Monday night. Only being out of the house once a week (if even that) has become a common pattern over the last while. Months maybe – not even sure. The reason for this is not because I don’t want to go out, have nothing to go out for, or am depressed (as no doubt my GP would try to suggest). It is simply because I don’t have enough energy left over after working and/or doing house stuff to be able to get out.
But it is a bad pattern – and so difficult to resolve.
Even if I sort of force myself to leave work aside for a day (and not because of the CFS being bad) – and go out to do something nice – it is hard for me to switch off from work stuff – as there is always so much outstanding. And it keeps causing more problems when left too long. Always has a financial knock-on. This in turn causes much stress which = worse CFS which = me not being able to work . . . etc. Then I get so stressed and exhausted about it all that I find it hard to be able to even think of things that are nice to do !
The whole vicious circle over and over.

But I am starting this week on Tues as a local B Hol here yesterday – and I slept thru most of the day. Well was in bed – not always sleeping. More going thru dozens of stuff that I didn’t get done last week and trying to mentally organise what order to do them in today. This of course achieved nothing – for one I didn’t write any of it down. And I remember little if its not written down.

Anyway thats enough moaning.
To try to take small steps towards breaking this vicious circle – I am going to try to do :
one nice thing for me everyday.
And it has to be something that does not involve me thinking or analysing or learning stuff. eg. if reading a book – it MUST be a fiction story. And not eg. a book on how to improve my time management or one of my vast collection of self-help books !

I’m writing this here today on my Blog – in the hope that it will help me to stick with this. As I have tried things like this before – but couldn’t stick to them. NB. Anybody who has done (or is doing) Mickel Therapy will recognise this as being part of applying Key 3 – one of the Mickel Therapy “tools”.

Today’s nice thing is :
Go out for a coffee and buy a magazine that I want. Probably to the Silverburn Centre.
Midday or during the afternoon.
No later – as I will be so sucked into work stuff by then I either won’t be able to leave it. Or – just as likely – I will have CFS symptoms by then which will make it too hard. eg. headache, sore neck, feeling too weak, etc.

So I must do it. For my own good.
Going for morning tea & bagel now.

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You Look Fine . . .

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You look fine or You look well or You Don’t Look Ill

Thought I would give this one a post of its own.

We have all had this comment.
In fact – not just us with CFS or ME, but many others who have what’s termed an invisible illness.
There are 3 different ways this comment is made in my experience :

1) As a genuine compliment.
Made from somebody who really means well or cares.
And in this case it is very welcome. As it is usually obvious that the person is saying it with genuine affection and all good intentions.
And it is a nice thing.

2) It is said in a doubtful manner.
This can be a difficult one – as its not always very clear how it is meant. It usually doesn’t “feel” like a compliment. Or as though it was said in encouragement.
You are left with the feeling that the person is questioning the validity of your condition – CFS or ME.
But impossible to respond to – because of the way it is said.

3) This one is said more aggressively.
And you are left in no doubt that the person either thinks there is nothing wrong with you. Or that you are exaggerating things for some reason.
In my experience this has always been impossible for me to respond too also. Usually because of being taken aback by the manner of the person making the comment. But also some of the typical CFS or ME symptoms seem to kick in – like not being able to find the right words when needed.  And I have always been left unable to make any sensible and non-angry response.
Several hours later – I will think “Oh I wish I had said . . . .  “  .
But the moment has passed.

More of those comments

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Have you no hobbies to fill your day ?

What – on top of being a Landlady and trying to keep a property portfolio (albeit a small one)  afloat thru the credit crunch & recession ? And the daily struggle with household tasks?  I‘m just grateful if I have any energy left over to eat my dinner or watch TV some days.

Your lucky you don’t have children – as you would just have to get on with it.

How would that work then?
Have you tried just getting on with it when you don’t have enough strength left to even stir a cup of tea ? But even more seriously – the whole issue of people with CFS or ME not managing with their children can cause much guilt or heartbreak.  Just read the book Shattered by Lynn Michell – there is a heart-rending section about this in it.

Nobody can be that tired (that they can’t make a phone call)

Want to bet ?
I rely on email a lot because of my CFS – as you can take as long as you need (to think) plus stop for many breaks. You can’t do that during a phone call – the person would just hang up on you.

I know you have your issues  

OMG – my “issues” – what are these then ?
From a friend I hadn’t seen for abbout 18 months. Did you maybe mean to say how are you and how are you getting on . . . ?  No ?  Oh well .

You must keep exercising – no matter how bad it makes you feel.

Unbelievably this was from the GP I kept going back to for years and years before I got diagnosed. She was very abrupt. In fact I’m not sure she was actually a GP – just somebody doing a very bad impersonation of one . . .

Let me know when you will be ok to go out 

How will I know ? Understand this one if from people who don’t really know me – or anything about CFS. But from other people . . . A bit frustrating.

She gets a bit tired at times.

This from my husband trying to explain it to people for me – and failing dismally . . . !  A major cause of much stress and rows over the years – but that’s another story.

Just let me know in advance if you cannot make it

Again – how will I know ?

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 !

2 hours to type an email (brain fog etc)

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Another Lost Day . . .

Had an important email to do today & I really wanted to to sent early morning. But I failed to get up very early (around 10 am) so I went straight into my office from bed – still in my dressing gown.  With my breakfast – a banana and a cereal bar.  And water.
(I’m not daft enough to start on an empty tummy !)
For info – my “office” is the bedroom just next door to my actual bedroom.

But this email took me around 2 hours to do – even though it wasn’t all that long or that difficult. But for me some days – a simple thing like this can take ages. The effort of thinking it out and actually typing it out just got harder and harder the more time I spent on it. My head got sore very fast so this slowed me down anyway. Then my neck got stiff. Then the dratted brain fog descended – where it becomes so hard to think clearly at all. My thoughts seem to come in slow motion – as if they are trying to get thru treacle or something.
But I kept pushing on – as it really had to be done.

But I do know that “pushing on” like this does usually make my CFS worse.  So why did I do it you ask ?

Well if it hadn’t been sent – this would have led to a delay in getting some work started in an empty flat. This delay would = money problems (as no rent coming in but mortgage etc all need paying). This would then = more stress.  And more stress would = worse CFS symptoms.

A bit of a vicious circle.

By the time I finished this and did one more thing – almost 2.5 hours had passed. And I was feeling so unwell I had to go back to bed.   At 12.30 lunchtime.
And slept thru to 8 pm tonight !

Not ideal at all.
Anyway – I just really wanted to have a moan about it.  As this makes me fed up some days.

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