My Life Today | Your Jaw Never Gets Tired

Boom & Bust

April 5, 2013

Anne Uncategorized fun Things, My Life Today, symptoms Leave a comment

Does anyone else feel their lives are a continual round of energy highs and lows ?
Or the “boom and bust” as its often known as.
Its so frustrating isn’t it ?

Last weekend (Sat evening) I went to a party. And my last post was about this.
To give myself the best possible chance of being ok for this party, I had to rest as much as possible for a few days before it.
In effect I took 2 days off work.

This paid off in and I made it to the party and had a really good night.
The next day was “lost” because of the very late night (5 am) and the amount of wine consumed ! But that was ok. To be expected really and I didn’t mind this at all.
It was a 50 th party, and not an every-day event.

What was annoying was the awful energy “crash” that followed.
The party was on Sat, the expected hangover on Sunday – just a headache and tired. And the headache was a normal, to be expected, headache. And the tiredness also the normal, to be expected, tiredness when you don’t get to bed until 5.30 am.
So that was ok. An accepted price to pay in my eyes.

But on Monday the slump, crash, payback, or whatever you want to call it set in.
More formally known as post-exertional exhaustion/fatigue/malaise . . . .
And for the benefit of any non-sufferers of CFS or ME reading – this is a type of tiredness or exhaustion that is not natural or comparable at all.
It is horrible.

Being Easter Monday, I didn’t stress or beat myself up over the fact I would likely lose the whole day, and get no work done. (Not that I would really want to work on a bank holiday, but remember I had avoided work since Wed of the week before.)
Anyway I think this helped me avoid the worst of the CFS headaches that often come on when I’m under stress.

But the tiredness . . .
It was much worse, totally different from the previous day. I felt like I was wearing pyjamas made of lead. I don’t actually wear pyjamas but you get the idea . . . Body powerless, weighed down. And my head/brain felt like I had been drugged.
Totally incapable of anything.
This lasted all thru Monday and affected most of Tuesday too.

By Wed I had to get some work done – as it had been left for a whole week by then.
And so – back into the vicious circle of the mini boom and busts !

Oh well – nobody said it would be easy, did they ?
In the opening line of one of my favourite books The Road Less Travelled by M Scott Peck, he states :

” Life Is Difficult ”

But I did enjoy the party and lasted an amazing 8 hours at it . . .
Ha !

A Party : Not easy but got there !

April 2, 2013

Anne Uncategorized fun Things, My Life Today, random Thoughts 1 Comment

On Saturday night I went to a 50th birthday party with my husband. It was such a good night and I was glad I managed to go.
Actually to say it was a good night is an under-statement.
It was a marvellous night.
So much so that we arrived at 8.30 pm and stayed until 5.00 am ! At least that’s what I’m told, as my memory of the time is slightly hazy . . . .
Now I will just mention here that we were not the last to leave. There were a few others still there after us.
The hosts were very generous with wine, and numerous other drinks. Plus champagne. And a mouth-watering selection of food and desserts. They really had pushed the boat out to make it a fab night.
I enjoyed so many things about the evening :
– Seeing and talking to friends I hadn’t seen for ages. (The closest friend there I hadn’t seen for over 12 months.)
– There was such a nice, and mixed, crowd of people. Quite a few I had met before, and quite a few I hadn’t.
– It was great chatting with new people too.
– After midnight the Birthday Girl opened the presents and cards guests had brought along – and this was lovely. Such a warm part of the evening. And nice to be part of it.
I actually felt a bit tearful at one point. (Good grief, I do need to get out more .)
– It was nice to see my husband relaxing and enjoying himself too. He was well overdue some fun time.
The next day I had a well-deserved hangover. Just a nasty headache (and tired of course). But I couldn’t complain about this at all. As totally self-induced with wine and the very late night.
But it was worth it.
These nights don’t happen every week after all.

During the party there was one moment when I felt a wee bit sad though. But just very fleetingly.
It was during the present opening.
I counted 16 of us gathered round. All women, as the men had slunk off for more drinks and were milling around in the kitchen, hallway, etc.
Anyway at one point I was just watching and observing everyone – and enjoying being part of it.
But I briefly wondered if anyone else had to plan and weigh up so much stuff.
Just to be able to be there that night.
To explain :
I had to be very careful with what I did for two days before to give myself the best possible chance of having enough energy on the day.
This meant, crucially, avoiding doing any work as far as I could on Thursday and Friday. As this makes me pretty unwell some days.
But even with doing this, come Saturday my CFS was still making me struggle.
I had planned to have a shower very early in the day, as sometimes have needed hours to recover my strength after it.
A good plan, but it didn’t happen.
So I had the shower a bit later, still giving myself plenty of time.
But even after resting (again) for ages afterwards I had to accept I wasn’t going to be able to iron anything to wear. Or wear a bra, as my chest was still pounding and I still felt quite out of breath.
I have always hated bras anyway, but wearing one is totally out of the question when I feel like this.
So I was limited to wearing things that didn’t look too dreadful unironed. And a top that could be worn without a bra without being too obvious (if you know what I mean).
Then it had to be trousers, as I had no new tights.
So I ended up wearing black pinstripe trousers – as they didn’t need ironed. With a greenish top which unfortunately wasn’t plain, but had a swirly pattern – because it was the only one that didn’t need ironed. And could be worn without a bra.
Then it gets even worse.
I had no pants left to wear !
(Everything was in the washing basket as I haven’t been able to do any washings recently. And the last ones had gone in at the end of the day before.)
So I ended up wearing pants that were part of a bikini set I would have worn on holiday abroad maybe 7 years ago. And are now a size too small.
The bloody things were “pinching” me all night and I had to keep fighting the urge to adjust them . . .
Then I had my very overgrown hair to deal with.
(Not managed to the hairdressers for 15 months.)
But had no energy left to “do anything with it” . So took a hairband along in my bag – and did resort to putting it on later in the evening when I just couldn’t bear my messy (but clean) hair anymore.
And the colour of the hairband ? Leopard skin pattern . . .
So I didn’t quite look the way I’d have liked. Quite a mismatch of patterns.
But I hopefully managed to look reasonably ok. Fairly bright-eyed and clear skin.
Probably thanks to all the water I drink.
And I probably gave a pretty good impersonation of someone who didn’t have CFS. Helped by the adrenaline and excitement of just being there. Plus quite a lot of alcohol too I think.
But I wondered if anyone else had to take two days off work before the party just to be ok for it.
Or have such a struggle with basic stuff like clothes.
Or would possibly suffer from post-exertional exhaustion a day or two later as a result.
(Which I did on Easter Monday – and this is a totally different thing from a hangover. Was like wearing pyjamas made of lead and being drugged.)

But these thoughts only lasted about 30 seconds, as I was enjoying myself far too much to dwell on this.
I’m only adding this in to explain to any non-sufferers of CFS (or ME) reading that we may look fine – but it isn’t always easy.
And we often pay for it afterwards.

It was still a great night though.

Should Life Be This Hard ?

March 7, 2013

Anne Stress My Life Today, symptoms 2 Comments

I had hoped (and wanted) to write posts for my blog more often. But it has been impossible recently.
Every aspect of my life feels so hard right now, and nothing is getting any easier. And I have been trying so hard for such a long time now.
Feels like forever.

I have tried to tell myself there will be light at the end of the tunnel – and that its just a very long tunnel.

But the harder I try, the more I push on, the more I try to think of better ways to manage my work, to try and stop the backlog spiralling out of all control, the worse my health seems to get. To put more specifically, my CFS symptoms get more severe, more frequent and last longer.
And it takes me longer to recover each time.
I know this is the same old stuff I keep whining on about.
I do know . . .

But I just dont know what to do about it.

My husband is also very exhausted by his work. He is 50 and does a job that is physically gruelling much of the time. And mentally stressful.
He is looking more worn out all the time. And more tired and worried. He is usually upbeat but will sometimes say things like ” should life be this hard ? ”

Its a good question. Because we are having very little life at all. For quite a long time now.

He has been battling all his work stresses with medication for a few years now – and has recently had the dose increased to a higher level.
Then add to that the fact that he has to do so much in the house on top of this – his life is not easy either.
Not one bit.
eg. Today he was up at 6.30 am and got home at 7.30 pm – physically exhausted after his day at work. And had to get straight into bed for a few hours. For him to do this means he is feeling quite bad indeed. (He often has to take painkillers too on days when he comes home with leg and hip pain. And stress headaches.)
I had been in bed almost the entire day again as my CFS is very bad at the moment. (I am not going to list all the symptoms as it would take too long.) But this is getting more and more frequent.

Neither of us has eaten much food all day. In his case – no time. In my case – not enough energy to go down to kitchen to get anything. Not unusual.
I eat a banana at 9am.
Since then I have just eaten a variety of non-perishable things I try to keep in the bedroom for days like these, eg. cereal bars, babybel mini cheeses, and biscuits. And water.

Everything is starting to feel impossible.

Today I tried to make a simple list of groceries needed – hubby was going to do a shopping tonight. (I haven’t even been able to do the online shopping recently.) And I was unable to even complete that. Just didnt have enough physical or mental energy.
So he is away to Tesco now with my half-written list. He was too tired himself to check it or add things to it.
And it is now 11 pm at night.

Neither of us has eaten any proper food, other than biscuits, for over 10 hrs (him) and 14 hrs (me). I asked him to also buy something we can eat right away when he comes back. Needing no cooking, or even heating up. As the lack of food for so many hours was making me even weaker. And wasn’t helping him much either.

Come the weekend he usually recovers.
But I often dont.
And may have to sleep thru much of it just to be able to do some work again by Monday.

Not sure if I’ve said this before. But I dont have any more work than anyone else.
The main reason I have my ” backlog mountain ” is the problem of working with all the CFS symptoms. And not being able to get a proper break from it all.

All the things I have used over the last few years to help me keep going (mentally) are working less and less.
eg.

Many positive thinking books.
(accumulated since the 1990s)
Making gratitude lists – the effect of this wears off if you do it for years. As you start to list the same things.
A favourite book – The Road Less Travelled by M Scott Peck.
Time management books
Organisational books
Inspirational quotes
Motivational quotes
Philosophical quotes
Apps I have installed on my mobile phone about how to control work stress. And how to better organise your workload when overwhelmed with too much stuff.
Meditation music to calm and slow my body (that mega fast heart rate), and my racing brain. eg. Tibetan flute music.
Twitter “favourites” filled with lots of inspiring and supportive tweets (ie. short messages)

etc etc etc – you get the picture.

But no matter how much positive thinking I do – it will not help when the physical situation remains unchanged.

I need practical help (with my work more than anything) – that much is clear to me.
But I don’t know how or where to ask for it. Or even what to ask for.
I mean, if I can’t summon up enough physical energy or mental clarity to even make a grocery list . . .

My brain (as well as my body) feels worn out now. The slightest effort to think about any of this triggers off such bad headaches that I have to give up.

This is a very negative post, I know.

But its better out than in – and thats why I have written it.
And inflicted it on you. (Sorry . . . )
In the hope that my head may be less heavy tomorrow.

A Poorer Weekend

February 18, 2013

Anne Stress My Life Today 1 Comment

This weekend was less good than the previous one.
Have been in bed pretty much the whole time. No tv, or reading books or magazines. Almost nothing. Too tired for anything. Body and brain exhausted. Food brought up to me in bed by my husband, which I was so grateful for.

This has been getting more and more common for a while now. Not really sure how long, and I don’t have enough mental energy to think back. But I sometimes feel the days, weeks and even months are all merging together.

The only thing that distinguishes one week or month from another is what “property crisis” has happened. (Or is ongoing.) And needed urgent attention.
Mind you, some of the things that get to a critical stage are caused by me only being able to work so slowly. And for shorter and shorter lengths of time. My frightening backlog just keeps getting bigger.

On Friday I only managed to do two things :

(a) An email to a large utility company about an issue ongoing for a few weeks now. Concerning a (currently empty) property where it seems the last two tenants didn’t bother to pay their gas & electric bills. And the letting agent has totally failed to confirm the move-in and move-out readings. All causing me unnecessary hassle and stress.
I didn’t have enough energy (physical or mental) to phone. The email wasn’t massively long – but it took me 2.5 hours to type and send.
Q. This may sound odd to any non-CFS/ME sufferers reading ?
To explain, the TOTAL time the email took me to do was 2.5 hours – not incl breaks. This was with numerous breaks/stops because my energy and thought processes were so poor. A phone call would have been beyond me as you cannot take a lot of breaks while talking. Either it would be a very long, expensive call. Or, more likely, the other person would just hang up.

Anyway, this was on Friday morning and took all my energy away for the rest of the day. I was unable to do anything after that.
And I mean anything.

(b) At around 11.00 pm at night I realised that I had meant to check my bank accounts that pay the BTL (buy to let) mortgage direct debits and receive rents.
This is a vital thing I have to check regularly. As the mortgage DD’s always come off on the same dates, but unfortunately rents don’t always come in when they should. This, together with the poxy overdraft limits = cash-flow problems at times !
Anyway, when I went online to check, it was as I had feared. One rent not thru and another short-paid for some reason. This meant I had to move some funds from elsewhere. May sound not too difficult ? Assuming funds can be found of course . . .
But I was trying to focus and work through so many CFS symptoms. Another bad headache started after just 5 mins at my desk, as well as lots of other symptoms. On top of feeling very weak and drained of all energy all day. Add in the brain fog – and this task became very difficult for me.
I got it all sorted out ok – but took me 90 mins. When it should have taken 10 or 15 mins.

NB. This is why I have a massive backlog. Not because I have any more work than anyone else.

The after-affect of having to push on like this, when I had been bad to start with, was “crash” – and all of Saturday and Sunday in bed.

Most of Sat my brain was still racing and in overdrive thinking about all the other things still on Friday’s To Do list. Maybe 15 or 20 things – and I had only managed 2 of them.
And some of these had been carried forward from previous days . . .
But the more I thought about it, and tried to think of ideas, solutions, better ways of doing it all – the more severe my headache got. And other symptoms.

It was making me increasinly ill.
And I was feeling quite beaten by it all.

But on Sunday – I listened to some meditation music thru my mobile with the earphones. It was trial and error, but some of it was really good. Really nice. And I think has helped a bit.

Now, Monday morning, I still feel very physically weak. But my head feels calmer, less exhausted maybe. And I haven’t needed any headache tablets for 18 hours now.

A step in the right direction ?

A Decent Weekend

February 13, 2013

Anne Uncategorized fun Things, My Life Today Leave a comment

Well the weekend past was reasonably good I guess.
Friday was a write-off – a bad CFS day. But nothing unusual at the moment.
On Saturday – the symptoms and exhaustion eased off by early evening. (Thank goodness . . . ) And I treated myself to a nice slow bath. Well it was certainly slow. As the whole business of shampooing hair and then rinsing by using a plastic tumbler of water was like something from many years ago.
And nice ?
That may be stretching it a bit. More awkward, as it is a very small bath. In a smaller than average bathroom. For me to lie back and stretch out fully – I have to put my feet on the wall above or beside the taps. Am I very tall you may be asking ? NO ! Just 5′ 2″ without shoes.
Also trying not to bang my head against the wash-hand basin above (slightly overhangs the bath) is another challenge.
But it was warm and I am finding it easier than taking a shower just now. Slightly less exhausting and I tend to recover a bit quicker afterwards.
Later had a very nice dinner which hubby cooked. Well, bought from Tesco and put in oven. But much appreciated. Very tender lamb shank, slow cooked with loads of veg. And some Prossecco wine. Just lovely. Followed by some chocs which were a gift from a friend. And a well appreciated gift too – as I had been in need of cheering up !

Sunday – and I actually got out of the house. 1st time for 21 days. Yes I have been counting – as this keeps happening. (My work is killing me.)
Went for a early evening pub meal with hubby.
Now we didn’t exactly push the boat out here. We went to a local J D Wetherspoons pub and had the “burger meal deal” – which was something like 2 burger meals & 2 soft drinks for £7.99 (in total). I enjoyed it though, as was great to be out the house.
Later once back home, just relaxed and watched some tv. With 2 small glasses of wine. And finished off those chocs.

Simple pleasures . . . but nice.
And I am very grateful for them.

An update

February 8, 2013

Anne Uncategorized My Life Today 2 Comments

When I started this blog in Aug 2012 I had so much stuff in my head that needed to be aired and shared. And I had grand plans of writing a post every week. I certainly have enough in my head for a weekly post.
But life with CFS gets in the way.
I find writing about my experiences with CFS very theraputic. Once I have written and published something on my blog, its as if some of the upset and/or anger the issue has caused me over the years reduces. Evaporates even in some cases. And this is very healthy.
But I have been struggling a lot recently, and managing to do very little – other than work. I have to do this (as work for myself) but am doing it poorly. And very slowly. And often feel like am getting nowhere.
It seems like my life is just :
work – exhausted/CFS worse – rest – recover a bit. Then start all over again.
But I know I’ve moaned about this before !
But there really isn’t much else going on. I counted back today – the last time I had enough energy left over to get out the house was 18 days ago. And this was just to the postbox at end of the street.
This wasn’t meant to be another post moaning about it though. More to explain why my posts have been few and far between, ie. No energy . . . . ! The same reason for not being able to do most things I’d like to.
However, I am going to try to post much more often. I mean, it doesn’t really matter if the items are shorter and not well written – does it ? Its just a blog after all.
But hope you will all keep reading anyway ?
PS. I really appreciate any comments that people have gone to the trouble of leaving – seriously. And I apologise for probably not responding to them. Again, its the sheer lack of energy thats to blame. Not lack of appreciation or interest.

The Chaos Of My House

October 31, 2012

Anne 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 !

Feeling Sorry For Myself Today !

October 12, 2012

Anne Uncategorized despair, fear, My Life Today, people, severe ME, struggle, understanding, work 1 Comment

Ok I confess I was feeling a bit sorry for myself today. But its allowed at times isn’t it ?

Reasons :

1) Now Friday night and I haven’t been outside the house since last Sunday. (Actually that is just 5 days which is better than some weeks. But still not great.)

2) I am managing to work (for myself) but doing it poorly. Backlog of work just gets bigger and bigger !

3) My life for such a long time now has been :
Work – too much for me – unwell – crash – rest – recover a bit
Then start all over again.

4) I just cannot get a proper break to allow myself to get better – or work towards it. If I stop for 1 or 2 days (when CFS forces me to) the work backlog and problems get worse. And makes it even harder when I restart a day or two later. I don’t want to keep going on about this as I know I’ve mentioned it before – but it feels unresolvable just now.

5) Have so little energy or time left over to do anything nice or fun – apart from work, work, work.
Not the life I would have chosen.

5) I was guilty of dwelling today on how many days of my life have been “lost” because of this bloody CFS.
By lost – I don’t mean days I haven’t got out the house. These are very common because I work from home, then have no energy left. I mean the days (like today) when most of it has been spent being unable to do almost anything (even work). And have been in and out of bed most of the time. (Still in my PJs now.)

6) Often feel the outside world has no idea what my life is like.
For instance neighbours that I haven’t managed to chat with properly for ages probably think I’m a bit unsociable. Some friends I’m sure have taken offence that I haven’t been in contact for ages. Etc etc
And my husband tends to play it down if people ask. He will say things like “she gets a bit tired” or “she tries her best”. Neither of course give any inkling of the reality.
NB. This is a difficult area for me and always has been.
I don’t know if I can yet explain it properly. You see its not that I am looking for attention or sympathy. But I often feel that hardly anyone knows how hard I am trying – and how hard it is day to day. And I am so sensitive at anyone thinking I’m lazy or not trying.

7) Sometimes I feel scared I could slip into a “severe CFS” state and won’t be able to pull myself back. If things in my life don’t improve and the day to day stress lifts a bit. This can’t happen on its own I know – and I am trying so hard and so many things. But these take up even more energy.

8) I keep saying “I will get there” and “I will keep going” . But some days I don‘t believe myself.

9) I was also dwelling (too much) on the way so many people treat you if you have CFS or ME. Not everyone by any means – but so many people.
Hubby once said to me “Anne, people are bored, don’t understand and are not interested”.
A young girl (young teens) with ME put it very simply in an article I read recently. She said “people have not been very nice to me since I got ME”.
Both of these sum it up at times . . . .

2 hours to type an email (brain fog etc)

September 12, 2012

Anne 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.

This Week So Far

August 23, 2012

Anne Uncategorized letting agents, My Life Today, property, pussycats, symptoms, work 1 Comment

It has been quite a difficult week so far – and now Thurs morning.

Am doing my best to keep dealing with my Property stuff and keep everything afloat. Its such a battle some days – most days actually. But its almost impossible to get a decent rest from it to help my CFS. Because if I take time off – the work backlog increases. And I can miss certain deadlines for things that need to be done. This then may cause a financial loss or penalty of some sort – which then gives me more work.

And what does this result in ?
More stress = worse CFS symptoms.

Anyway – I just want to have a wee moan about it here. As it saves me inflicting my moans and tales of woe on friends face to face who are kind of trapped into listening at times.

Yesterday was a typical rubbish day.

Was in bed exhausted all morning and afternoon.
This was following a bout of hoovering the day before (Tues). Well not much of a “bout” – just the living room. Plus I used my Turbo Tiger (a hand-held vacuum cleaner – not a sex toy I should add . . ! ) to vacuum the sofas. But it was very hard work.

I knew this would take it out of me but it just had to be done. I have 2 visiting pussy cats who have been in a lot recently – they are gorgeous. But the build-up of fur was making me very sniffy and sneezy. I love cats but this is one of the reasons I don’t have any of my own. But I like to have a visiting cat – in this case 2.

In the past my husband would have done any hovering needed. But we have been living apart since Jan this year. (Which is another story.)

Anyway – I didn’t manage to do any work until the evening. And rather pathetically this consisted of just 2 emails . . .

I won’t go into much detail as it really is very boring.
But just to say it concerned a flat with a recurring damp problem, a letting agent who I thought were helping me to get this sorted but have just dumped it back onto me, and a local Council (who are also factors for the building) who do F**k all when it comes to vital communal repairs to things like drains, gutters etc. No matter how many times you ask them. And a tenant who is now leaving – as nobody can get this sorted.

Probably because of the history with this – I started to feel ill very quickly when trying to think out the wording of the emails. I was trying to stay focused but kept thinking about the general imcompetence and unhelpfulness of the Council and was feeling angry and frustrated by it all. Plus the letting agent who should be helping me were now increasing my problems (another story . . ).
As well as the horrible tiredness/weakness – I got a nasty headache very fast, plus stiff neck, sore shoulder and upper back. My concentration became poor very fast and I was losing track of my thoughts and struggling to focus on what I was doing.
A simple thing will take me ages when feeling like this.

Anyway I pushed on to get the emails done – and it took me 2 hours. Even with the slightly complex history – it should take maybe 20-30 mins tops.
No wonder I have a backlog.

And by the end of this my headache was so bad I had to go and lie down (again) with the light off in darkness. And take painkillers obviously. My eyes were so tired and strained too. I couldn’t even tolerate any light.

Eventually got up again and had something to eat. Then back to bed for the night.
But didn’t even manage to do any “normal” things – like get even washed and dressed.

But I will get there . . .

Your Jaw Never Gets Tired

Boom & Bust

A Party : Not easy but got there !

Should Life Be This Hard ?

A Poorer Weekend

A Decent Weekend

An update

The Chaos Of My House

Feeling Sorry For Myself Today !

2 hours to type an email (brain fog etc)

This Week So Far

Anne

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