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Easter Weekend – what happened to it ?

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I realise I haven’t posted for some time.
The last few years is the worst my CFS and health has been for a long time. And it’s not really getting any better at the moment.
If anything it has possibly been even worse since maybe February-ish.
But to be honest it is hard for me to tell anything for sure.
The “brain fog” symptoms (ie, cognitive dysfunction) are quite possibly the worst they have ever been.
Plus the increased sensitivity to any stimulation (sound, TV, movement, brightness, reading, using computer, etc etc).
And all of this has been very severely disabling.
All I want is proper rest, head and brain rest more than anything. If that makes sense ?
But I remain hopeful, as I have some reasonable days. Even if they are quite few.
I guess I’m just posting this out of frustration, in the hope that I’ll feel better (emotionally that is) once I’ve done it.
And to keep my Blog going – as I  have been neglecting it.
Well, I have been managing almost nothing much of the time.
The smallest thing takes so much out of me, and the time needed to recover from it seems to get longer and longer each time.
So bloody difficult . . . .
But everyone with CFS and ME will know what I mean.
I haven’t managed to get outside the house for nearly 4 weeks now. The Easter Weekend has just passed in the blink of an eye.
Husband had the full 4 days off. I was glad he did – he was well overdue a break and some relaxation. I just wish I had been able to enjoy more of it with him, but have been in bed throughout most of the time.
The thing that has probably disappointed me most was not being able to get out into the garden. Ok, it is a mess out there, no doubt to our neighbours’ horror.  But I would love to have been able to sit outside and feel the fresh air and sunlight on my face.
I love the sun.
However we did enjoy some tasty   Chinese food on Sunday night and a couple of glasses of wine. And despite my ability to tolerate TV being very low just now – we did manage to watch a good film.
So it wasn’t all bad.

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Too much thinking ?

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Have realised this week I need to be more careful with what I do.  And not to get so carried away with things. If I am enjoying something and find it interesting and worthwhile – I tend to kind of throw myself into it and lose all track of time. And this can (and often will) make my CFS symptoms worse. Except I don’t realise this while it is happening or building up – but only when it is too late. If that makes sense to anyone ?  That awful post-exertional fatigue – except that “fatigue” is a very lame description of how it feels. Plus very nasty headaches this week with eye strain and over-sensitivity to bright lights, noise etc. I got to the stage I couldn’t even tolerate watching TV or reading a book or paper.
Not ideal.

This week I have spent far too much time at my desk using my laptop – again.
I have to do this with my work stuff and that can’t usually be avoided.  But have also being spending too much time on twitter. And thinking up stuff my for blog. Actually that gives the impression I am struggling to find stuff to use – but its the opposite problem. My head is full of over 20 years worth of stuff I want to get out – the problem is deciding what to write about first. So I end up spending too much time thinking and mulling over several options and ideas at once. Then end up too tired or headachey to write anything at all !
Overthinking stuff is maybe something I have always been prone to doing. In fact when I was doing Mickel Therapy back in 2008-09 David Mickel once said to me that his biggest challenge (ie. read problem !) was to get me to stop thinking so much. You see Mickel Therapy although decribed as a “talking treatment” is NOT a phsycological treatment. It has nothing at all to do with positive thinking, changing your thought processes, analysing, cognitive behavioral therapy (CBT), etc etc. (Just decided I would add this as I know there will by many sceptics out there – which is a pity.)

Back to my point :
Although I really enjoy twitter as there is a whole world of interesting people on it, and subjects that interest me – I have to accept this involves too much time staring at my laptop screen. And I will keep doing this blog – but must try to get into a better routine with it. Just decide on an item and write about it. Don’t over-think it and don’t worry about trying to make my writing perfect either. It is just a blog after all – not a classic novel. Both these things involve me spending too much time thinking, and over-stimulating my brain. Twitter of course is fatal for this – so many people and so many subjects of interest on it. Interesting to me anyway. But although my head feels it is enjoying this – I have to accept that sometimes my body does not, ie, the bad CFS symptoms this week.

Not a very good post I know – more a note to myself.

Do any others with CFS or ME feel their symptoms get worse if spend too much time thinking ? Or over-stimulating the brain in some way ?

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.

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.

Things People Say (positive thinking & housework)

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” She keeps her house immaculate – but then she has such a positive attitude “

This one also merits a post of its own.

A friend visiting me at home told me about a friend (of hers) who was sadly very ill with cancer.

My friend has know me for over 30 years – therefore has known me before CFS and all the time I have had it. And she knows that I regularly struggle with doing some physical things.
Like housework and cleaning for instance.
Which can often defeat me (and cause me to stress over it). Or I actually manage to do some – but often pay the price afterwards with a bad relapse or “crash” and may need a day or so in bed to recover. Or at best a long rest – and waste half a day while energy is restored.

When my energy is very limited I often have to choose between essentials. Therefore things like managing to have food in the house, and make meals just has to take a higher priority. Or laundry. Or even personal cleaning/hygiene.
I mean what is the point of a clean house if I am a mess myself, with no clean clothes to wear ? And hair an unwashed straggly mess.
And food – well it’s an essential for life. We cannot do without it.
Also my work – which can quickly spiral out of control when I fail to keep on top of it. And is a constant challenge for me.

But a dust-free room, clean kitchen floor, hoovered carpets etc – just cannot be as high up the priority list when you have to choose. Everybody would agree with that – surely ?

All these things my friend knows – as I have explained over and over throughout the years.
So although I tried not to – I couldn’t help but feel upset at her comment. As it kind of implied that if only I was to change my attitude in some way then I too could have a lovely clean house !

With regard to her friend who was managing to maintain a spotless house despite her awful health predicament – I had to admit I was curious.
I was imaging some sort of mind over matter positive thinking. You know the sort of thing you read about where a person somehow manages to summon up a huge amount of mental energy and can make themselves do amazing things.  Like walk over red-hot coals in bare feet.

Finally I just had to blurt out “but how does she do it ?”
The answer was not what I expected.
It was : She pays her sister to clean her house for her.

Now there is absolutely nothing at all wrong with this as it was obviously an arrangement that suited both of them.  And if I had the money to spare then I would have a cleaner too for sure. But the way that my friend was quoting it to me as an example of “positive thinking” . . .

I think maybe because of the look on my face my friend went on to explain further that the sister  “hadn’t done very well for herself in life” and that her ill friend was actually helping her out by letting her clean her house and paying her for it.

For once I was left speechless . . . .

Footnote :

I decided to add this incase I have caused any offence or distress to any cancer sufferers out there with this post ? As this was totally not my intention.  The employment of a cleaner is something to be recommended 100% if you have the spare funds to pay for it.  The point of my post was the comment made by my friend – and wasn’t meant to sound critical of the person with the cancer in any way at all.

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