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The Chaos Of My House

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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 !

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 ?

#ME Insults on Twitter

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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 – maybe even over a thousand 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 ?

Feeling Sorry For Myself Today !

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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 – rest – recover
– 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 . . . .

CBT & GET – my experience

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CBT & GET – My Experience

To follow up on the recent post on CBT and GET – I thought I would share my experiences of this. I imagine people’s experiences will vary widely.
These 2 treatments are still the main recommended treatments today – here in the UK and also in the US (as I learned last week).
My understanding is that they have helped very few people with CFS or ME – and many have reported that GET actually made them worse.

CBT = Cognitive Behavioural Therapy
GET = Graded Exercise Therapy

CBT :
This is a talking psychological treatment with a therapist, counsellor, psychologist or psychiatrist.
In my case it was with a clinical psychologist in Glasgow in 2004. There was a long waiting list for this – I waited around 9 months.
Well we now know that this does not work for CFS or ME – as it is a psychological treatment aimed at curing a physical condition.
To be honest, my experience of it was reasonable all the same. Compared to many other stories I have heard.
The psychologist was very nice and easy to talk to. He put no pressure on me to feel I should be trying harder and seeking another full-time job. By 2003 my health had forced me to resign from 3 jobs. One after 20 years, next after 1 year, and final one (part-time) after 4 years. And I had left with nothing at all financially – even after 20 years in the main job. So I was feeling a bit of a failure without doubt at that time.
Being able to talk and being listened to and encouraged did help me a lot on an emotional level. (Especially after what felt like brutal treatment and lack of help from a previous GP over more than 12 years.)
However it was no help at all with my CFS. It did nothing to cure it – impossible as we now know. And nothing much to improve it either.

GET :
My experience of this was just silly and a total waste of time.
I was referred to an exercise therapist who was based in a sports centre in Glasgow south-side in March 2003.
The first thing I remember that seemed stupid was I had to fill out a questionnaire – but it was full of questions about your mood, etc. Whereas I had been expecting questions about everyday stuff I found hard – eg. Housework. Or physical activities. By the end of the questionnaire my mood had certainly gone downhill – it had made me feel a bit stressed. As the questions bore no relation to the problems I was having day to day.
Next (after a short chat with the therapist) I was set exercise targets for a month. A combination of outdoor walks and using a sky walker (or elliptical trainer) I had at home. I was to do these every day. And I had activity charts to record my progress – with space for ratings and any comments. The ratings ranged from 8 (very easy) to 15 (very hard & unable to speak).
For the 1st month my ratings were all 14-15. But with no comments. It got no easier – and by the end of the 6th month my ratings were all 15 and I had even added some 16s. Plus I had a lot of comments too by this stage, eg. Felt sick, felt dizzy, felt shaky, back sore after, etc. Basically it was making me worse – but I couldn’t see it at the time.
The therapist phoned me after the 1st month. I said Yes I was sticking to the targets but it was very hard and I wasn’t any better. She said something vague like “well never mind, just keep going . . .” And changed the arrangement so that I was to phone her after month 2 with my “progress”. I didn’t bother to phone her back as she didn’t seem very knowledgeable or helpful. And couldn’t answer any questions I had asked. (She was probably glad I didn’t phone back !)
But I did keep pushing on with it as has always been my way. Although very stupid in this case. Then eventually gave in and just stopped.
I do realise that I was very lucky that the GET didn’t push me into a severe relapse though – as has been the case with others. And I was also lucky that my therapist was fairly uninterested – as many others have been pushed on too far by over-zealous therapists.

My thoughts now :
GET should be abolished. And CBT only offered as a complimentary treatment.

CBT & GET used in US too

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CBT & GET

In my Reasons For Blog post I mentioned the treatment (or mistreatment) of people with CFS and ME has become a national and world-wide scandal. And it feels that almost every week something else happens to emphasise this.

2 things this week :

1) The #MEinsults timeline that took off on Twitter.

2) The CFS Advisory Committee meeting in the USA

I will just cover (2) in this post.

I didn’t know much about this until I saw a message on twitter. To explain :

The CFSAC are the Chronic Fatigue Syndrome Advisory Committee in the US. They provide advice and recommendations to HHS.gov (the Dept of Health and Human Services) on issues relating to CFS and ME.
They met a few days ago to listen to presentations and submissions from people involved with CFS & ME – including sufferers themselves (or their representatives). One of the recommendations made from a mother of a severely affected sufferer was that use of The Toolkit should be stopped with immediate effect.
I didn’t know what this was. Now I read it I see it is the recommended treatment and uses GET (graded exercise therapy) and CBT (cognitive behavioural therapy).
Just like the UK.
Unbelievably the AC have now decided to continue using the Toolkit despite the impassioned plea against it. Very depressing. There are millions of sufferers in the US and this means no new hope for them.

GET has been described as a type of torture for people who are very ill. For others it ranges from being no use at all to making their condition much worse. And even pushing them from a mild or moderate state (both still very bad) – into the much worse severe or very severe level. There seem to be very few people helped by it, if any. Yet it is still one of the two primary treatments in the UK and USA.
It is scandalous.

CBT is a psychological-based talking treatment – except that it does nothing to treat the condition and therefore has no chance of curing it. Or even improving it. But this is so obvious when it is a psychological treatment being used for a physical illness. And it is still the other of the two main treatments today.

The fact that the CFS Advisory Committee have ignored advice made to them just seems plain stupid. And will just cause further despair for so many.

Reasons For Blog

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A few days ago I was reflecting on my reasons for starting this blog. I said the main reason was for myself – to de-stress. And this is true. I also said I wasn’t bothered if people read it or not – well this wasn’t totally true. I would like people to read it.

Because :

1) I am so anxious for people to know I am not lazy.
This is something I am sensitive about – but it is because of the treatment I have encountered over the years. Many years.

2) So people know what I do – re working with property.
I work for myself, by myself, at home – and sometimes feel a bit removed from the outside world. Doing it with CFS isn’t always easy. Its not that I’m craving attention – but nobody likes to feel they are hidden away with people having no idea what they do all day.

3) To help friends understand why it has often been difficult to have a proper social life.
I am not choosing not to see them. And I am trying to get things back on an even keel.

Other reasons :

4) To help get the word out about the awful treatment of CFS and ME. And to add my voice to the calls for recognition from : the government, health professionals, and the general public.
At the moment the situation is a national and world-wide scandal. People with very severe CFS and ME are actually dying – and it is ignored. Just hidden away.

5) To connect with others with CFS or ME.
Joining twitter opened my eyes to how many people were out there who wanted to talk and share experiences. And just to connect.

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