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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

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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.

My Work Is Killing Me

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My Work Is Killing Me

Couldn’t get back to sleep – the racing brain again.

Thoughts rushing around at 100 miles an hour, lots of different work ideas, many contradicting each other, cannot decide what best to do over 2 o/s issues from yesterday, lots of other o/s problems rushing into my mind that need dealt with too, all important things (as I deal with Property – everything has a financial effect or knock-on and a financial penalty if ignored too long).
But I cannot focus on anything properly.

My concentration is shot to pieces – and its only 6.30 am. Not even out of bed yet or started my day.

And have the bad headache back again.
It started chewing away at my head as soon as my thoughts turned to my work. But don’t want to take painkillers just yet. (only 4 left in the house – but that’s a separate problem !)
So decided to type a post for my blog instead.
As my hope is that getting this out (of my head) will help release stress therefore help my damned CFS symptoms . . .

Don’t want to go into too much detail here about yesterday’s property problems – as it will be on the boring side. (And I plan to start another blog about this.)

But the No 1 item in my head is the unhelpfulness of the banks.

In particular a bank I spoke to on the phone last night for around 30 mins.  I mean we all know it’s the credit crunch – but honest to god – they could not be more difficult or awkward to deal with if they tried.
I was left feeling that I wished I hadn’t bothered as it turned out to be such a waste of my time and my energy. Both as valuable to me.
Still – I should be grateful that at least it wasn’t India.

I am sure this is the No 1 reason for so many small business going to the wall.

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 !

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