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 !
#ME Insults on Twitter
October 21, 2012
Anne Raw Emotions bullying, comments, ignorance, invisible illness, society, things People Say, twitter, understanding 16 Comments
ME Insults
In my post of 6th Oct I mentioned that the poor treatment of people with CFS or ME was a scandal. And I had mentioned the ME Insults timeline on Twitter. A bit more about this now.
Twitter is marvellous for connecting with people worldwide on endless topics of interest.
Recently someone posted (tweeted) a message suggesting that people share any insults they had received since having ME or CFS. This then quickly expanded to include any comments which were – ignorant, hurtful, nasty, silly or just plain stupid. It was suggested that any replies included #MEinsults in them – so they would be recorded in a separate timeline in Twitter.
And it just took off.
Hundreds of people posted messages in just a day or two. What started off as a way of sharing and venting frustrations about how folk had been treated became more serious as all the posts (tweets) came thru. And were read. Seeing so many examples in black and white of how many people had been treated poorly (by GPs and/or friends, family, relatives) was incredibly shocking. None of it will be news to many people who have had CFS or ME – especially if over a long period of time. But seeing so many examples in writing somehow made it really hit home.
Some random examples from the #MEinsults timeline as follows :
“You have been unwell for far too long now. Its time my son found himself a new wife.”
(Has got to be one of the most cruel ones.)
“That shooter had something wrong with his head – and you have too.”
(Incredibly from a GP to his patient and referring to a gunman who had shot and killed several people in the city earlier that week.)
There is something wrong with your head.
(A variation of above but from a GP’s receptionist this time. Yes – the receptionist.)
“It doesn’t matter how bad it makes you feel – you must keep doing it.”
(My 1st GP’s view on keeping on exercising on top of working full-time while my health and symptoms got worse and worse.)
Do you not get bored in the house all day ?
We all get tired but we just have to push on.
Maybe you should try to be a bit more positive.
If you bring her back to school tomorrow then we will say no more about it.
(From a head-teacher to the mother of a severely affected pupil.)
I couldn’t be bothered with that.
I’m not the sort of person who would get that.
I don’t really believe in all that.
I don’t think he is really trying to get well.
You really shouldn’t keep him indoors so much – its not good for him.
(From a GP to the mother of a severely affected sufferer who had deteriorated to the extent he was almost bedridden.)
We don’t do home visits for fatigue here.
(A GP surgery refusing to visit a severely affected housebound sufferer.)
This is just a very brief selection.
Some thoughts :
Why is this still tolerated today ? And why do people feel it is ok to speak to sufferers like that ? And would these sort of comments would be made to people with cancer or multiple sclerosis ?