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A Post For Invisible Illness Week

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Thanks to Twitter I know this week is “Invisible Illness Week”. And decided I would do a post to help raise awareness.

CFS (and ME) are classed as invisible illnesses.

For many reasons :

People can’t see it

People often don’t understand it

People often dismiss it as trivial and unimportant – despite some sufferers having died from it. eg. Sophia Mirza, Emily Collingridge.
(Sophia Mirza was the first person in the UK to have Chronic Fatigue Syndrome recorded on her death certificate in 2006.)

Some people are still so ignorant that “they don’t believe in it”.

It is a condition which can fluctuate (often dramatically) and this seems to cause confusion with people.
Although many conditions fluctuate to some extent. But with CFS and ME this isn’t “allowed for”.

Sufferers often look well – that is when you actually see them !
Much of the time we are invisible to the outside world as may not get out much.

Some sufferers are totally housebound, and worse, may be bedridden. In some very severe cases have to be tube-fed.

It is very hard to explain to people as there is often a huge list of symptoms – it is NOT just about being tired.

There is currently no recognised, established treatment that cures.

Many GPs are unhelpful and dismissive – which is actually a national scandal.

Many sufferers lead very reduced, limited lives much of the time.

But people just think they have become a bit quiet, unfriendly, anti-social, not making an effort, depressed, etc etc

Some sufferers manage to continue to work – but this often takes everything they have. And they have no energy left over for any quality life.


This isn’t a very good post as I have just listed points as they came to mind. Not really in any order.
And there will be lots more points, but I haven’t any more energy to spend on this just now.

Later today I am having some lunch with a friend.

We used to see each other every week.
But this year (now mid-September) this will be only the 2nd time I have managed to go out anywhere with her. The last time was in January, also for lunch.
We have managed the odd Friday evening in each other’s house. But even that hasn’t been often – maybe 3 or 4 times.

So, all going well, I will be enjoying a nice lunch. And nice company. And maybe a little glass of wine.
And hopefully looking reasonably ok. Well, clean and dressed anyway !

Whereas yesterday I was in bed all day following a 3 hour burst of urgent work the evening before.
And spent much of that time worrying and hoping that I will manage the lunch.

But that’s invisible illness for you . . . .

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Music and Memories

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This post was kind off inspired by the idea of #Five Minute Friday on Twitter. Which is to write about something random without much thought for 5 mins. On a Friday.

Well this took more than 5 mins (very slow typing).
But once I decided on music, loads of songs and memories came to me very quickly.

My Blog is in need of some happy, fun stuff for sure.
So here are a few random memories. Not in any order at all.
The places mentioned were mainly in Glasgow. In the 80’s.

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The Lonely Landlady

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The Lonely Landlady

She lives in her bedroom

She sleeps in her bedroom

She works from her bedroom, her bed

Her office next door with a backlog mountain growing daily

Her ability to cope diminishing daily

Her ability to switch-off, relax, non-existant

Her ability to cope with any mental stimulation or stress, very poor now

She dreams not of nice things, but of everything slipping away

She is thrilled to get downstairs, just to watch tv twice a week

She is grateful to get out the house once a week, on a good week

She has been left to rot by the NHS, for almost 25 years now

She is sad, upset, about the way some friends have acted

She hates it when her husband flippantly says “people don’t care, they’re not interested and are bored”

She is among nice neighbours who have no idea, think she has become unfriendly

She writes Gratitude Lists to keep her spirits up

She listens to Tibetan Flute Music, to slow her mind down

She dreams of getting away from home, to recuperate for a while

She thinks wistfully of her last holiday 3 years ago, beautiful Lake District

She feels wretched for her husband, he works so hard. And has to do far too much around the house.

She feels angry at being treated so badly by the system, after years of working

She worries that it has all been for nothing, will all be wasted

She desparately wants time off but can’t see how, it seems impossible.
Her husband agrees

She fears a further descent into severe CFS

And fears that she wouldn’t be able to climb back out . . . .


Footnote :

I’m not sure what to call the above.
Its not really a poem, more a ramble.
And its not well thought out, not really in any order at all.
But I felt it was “better out than in” .
For me, that is.

Feel free to ignore . . . .

Am I getting worse ?

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Its now Jan 2013 and not much has changed. In terms of my day to day life and CFS.
I actually wonder if my health has got a bit worse over the last 2 years. But its hard for me to be objective and measure this clearly.
My head is filled up thinking about work (property) issues and problems. And household problems. And money matters – household and business. And practical problems of so many things I need to do, but haven’t been able to :
eg :
get my hair cut (over 12 months now), visit to dentist (maybe over 2 years), go for breast screening, was due 3 years ago. (have had 3 appointments but wasn’t well enough for any of them).
With all this going on, plus my CFS neurological smptoms of “brain fog” and the “racing brain” (to name just two), this is probably why I haven’t got the ability to tell.
But I am getting more severe and longer-lasting symptoms some weeks. And it seems to  take me longer to recover from my “crashes” each time.
People with CFS and ME will know what I mean by crashes. But for the benefit of others – it is more commonly called post exertional fatigue or post exertional exhaustion. And its nothing like the natural tiredness, or exhaustion, people can feel after a long hard day. Or even after doing something out of the ordinary which been exhausting. Like a marathon run. This tiredness/fatigue/exhaustion is entirely natural and a normal healthy person usually just needs adequate rest to recover from it.
But with CFS and ME it is so much worse.
The level of exhaustion, and severity of  other symptoms, can be very bad indeed. And often totally out of all proportion to the amount of time and energy the person had used. On whatever they were doing. And to make it even harder to control – it can fluctuate from day to day, week to week, etc. (Making planning things often a real challenge, if not impossible at times.)
An example from my day to day life :
I find that I’m often exhausted now after having a shower and may need hours to recover. Not every time but too often.
By “exhausted” I mean – I am too weak and out of breath to be able to do much other than rest. My arms are sore and weak with the effort taken holding them up long enough to shampoo my hair. And my chest is pounding and heart racing. I took my pulse after a shower a while ago – it was 141. This is maybe 2 to 2.5  x  the average rate of a fitter person ?
Yet it was a simple, short and non-stressful activity, done slowly under no pressure.
This makes me wonder how high my heart rate goes when I feel under any major stress.
eg. In November 2012 when relations turned sour with a firm of tradesmen I had used for lots of work in my properties. And spent much money with them. One of the 2 partners turned into a total scumbag and actually threatened voilence against the properties. Saying he would “rip the fittings out of all of them”. Or words similar. And this in writing to me by text message. . . Then a 2nd text message to me confirming it was “a promise, not a threat” . Unbelievable.
Just to add here : I had an ongoing account with this firm and faithfully paid them every month as had been agreed. So I wasn’t in default to them in any way. But I had been raising my dissatisfaction with some of their work, and various broken promises with time-scales etc.
And they just turned nasty.
That week I was in bed almost the entire time – and my worst symptom was feeling like an elephant was sitting on my chest. That heavy, weighty feeling.
Just awful.
But I still had to deal with the situation as best I could – from my bed. And not very well admittedly.
Its all over now and these people are out of my life.
But I hate to think that this could have worsened my condition. As I was experiencing so many bad emotions that week – fear, anger, disbelief, frustration, despair. But anger more than anything.
However they say what doesn’t kill you makes you stronger.
I certainly hope so  . . .  !

#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 ?

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