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.
Easter Weekend – what happened to it ?
April 22, 2014
Uncategorized brain fog, food, frustration, fun Things, My Life Today, PEM, sensitivity, TV, wine 1 Comment
The Chaos Of My House
October 31, 2012
Uncategorized brain fog, housework, marriage, My Life Today, pussycats Leave a comment
The Chaos Of My Life
Right now all around me feels chaotic so thought I’d write a post about it – as it may calm my head down.
My work is totally chaotic and has been for ages now as I am struggling so much to do any of it. The harder I try the worse my CFS symptoms get. Over the last week or so I can hardly even use my laptop. This is severely restricting what I can do as rely on email very much. Just looking at the screen (no matter how I alter brightness etc) is giving me almost instant headaches some days. Also use my mobile phone (an old style one) for text messages to communicate a lot. But this isn’t great either – as it is feels like shining a bright torch into my face . Not to mention that I go thru my pay as you go credit at a lightening rate. (And not everyone does text messages anyway.)
I have probably already mentioned how difficult phone calls can be with CFS – when the brain fog or racing brain kicks in. Not to mention everything else.
In fact – just actually thinking (about anything work wise) is giving me such bad headaches and exhaustion now.
So its not making for an easy life : if I can hardly use my laptop, mobile phone or even think . . .
But I know there is a funny side to this. I did chuckle to myself this morning as the thought of trying to explain to a angry employer (if I had one) that I was too ill to come into work because thinking was too much for me ! I don’t imagine that would be well received or understood – do you ?
But I wanted to make this post about non-work things.
Some other things that feel chaotic right now are :
a) The House is dreadful mess.
Cluttered with stuff everywhere and nothing in a logical place. To explain, Hubby moved back again 6 weeks ago. (Both happy about this – may do a separate post later.) He had been living in one of the flats that is normally rented out near Shawlands. For 9 months. So various items of furniture and loads of belongings are now here – but most have still to be merged back into the house. At the moment they are all over the place. Things keep getting lost or misplaced everywhere. And neither of us have had the time or energy to sort it all out properly.
b) My Office is a mess too.
Same reason as above – on top of my ever growing backlog of work and problems. Sitting at my desk typing this I can see on the floor and table ahead of me : surplus pillows, various lamps, a mirror, a painting, 6 mini boxes filled with stuff, lots of bags containing Xmas gift bags that were taken out a cupboard to let other stuff in . . . etc etc.
A setting that doesn’t make for clear thinking at all.
c) An over-flowing laundry room.
I am lucky to have a decent amount of space at home – but not much storage. Have 2 downstairs cupboards but the larger one is used to house the washing machine and washing baskets. At the moment it looks like a very out of control laundry. The 2 washing baskets have doubled to 4. Hubby has 1 and it is fairly empty – he is good with his. The other 3 are for my stuff, and towels and bedding – and they are all totally overflowing. Its getting to the stage that almost every towel and item of bedding in the house needs washing. Not to mention most of my own clothes.
Why – because I haven’t enough time or energy. The usual issue.
d) We are lucky to have a 2nd TV room – but its a muddle too.
After 21 years together and 9 months apart (recently) Hubby and I realise that we must have our own separate time as well as together time. So he will use this room at times. But right now the room is a shambles. So much stuff everywhere – I try not to even look into it when I pass to go to kitchen. The TV and DVD player aren’t connected up yet and there are wires, rolls of cable, remote controls etc all over the floor. And it has been like this for 6 weeks. But he hasn’t had time to sort out yet. Even the switch for the cable modem I need to put on (to use broadband) is in this room underneath a table. So I have to crawl under every day to switch on and off.
Not ideal . . .
e) The only good bedroom is unusable.
The central heating system and boiler are ancient – over 40 years old. We have had quotes but too expensive to replace it. It still works and works well in downstairs rooms. But the heating now struggles to get to some rooms upstairs. In particular the main bedroom which I love because of its size and brightness. And its bay windows – something about bay windows I find calming. But this room is now (for me) a “no go” area as simply too cold. And will get much colder yet as winter approaches. (Everything has been tried, adjustments, an extra pump, new radiators etc – but the ancient system simply isn’t coping.)
So we now use a much smaller bedroom at the back of the house which heats up well (so far). And realise am lucky to have this option.
But its not ideal as quite small. And gets a very poor light – even on a bright sunny day. It has a lovely view of the side of next door’s house – a brick wall ! And its crammed with far too much stuff at the moment.
f) Finally – and to cap it all – we now have fleas from a visiting pussy cat !
Yeh Gods . . .
We thought we were imagining it at first – as haven’t actually seen any. Do you actually see fleas . . . ? I have no idea . And certainly couldn’t see any on the pussycat herself – who is a very fluffy girl cat with a massive tail. Simply gorgeous and irresistible. How could I turn a pussy like that away . . . when she meows at the kitchen door for attention ? And cats are always washing and grooming their fur (very proud animals) so we didn’t suspect anything at all.
But the lovely ankle bites can no longer be ignored. So that’s something else to deal with.
Oh well – I wouldn’t like to have nothing to think about . . .
Aaaaargh .
Undernote :
I changed the name of this post as the previous one gave the impression of things being more dire than they are. Its not my total life thats in chaos – just some parts of it !
My CFS Symptoms
September 21, 2012
Uncategorized brain fog, breathless, chest pain, concentration, exhaustion, headaches, heart rate, IBS, ME/CFS, muscle weakness, pain, symptoms 2 Comments
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
2 hours to type an email (brain fog etc)
September 12, 2012
Uncategorized brain fog, concentration, emails, financial, My Life Today, PEM, work 1 Comment
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.
Brain Fog & Racing Thoughts
September 1, 2012
Uncategorized brain fog, concentration, electro sensitivity, headaches, hyper sensitivity, ME/CFS, neurological, phone calls, racing thoughts, symptoms Leave a comment
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”.
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 !
Headaches:
The headaches are so bad too. They come often with quite an intensity.
Hyper Sensitivity:
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 !
Your Jaw Never Gets Tired 
You Look Fine . . .
September 22, 2012
Anne Uncategorized brain fog, comments, disbelief, ignorance, invisible illness, kindness, things People Say 1 Comment
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 (brain fog. ) 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.