September | 2013 | Your Jaw Never Gets Tired

Negative Blogpost Alert !

You have heard the song It’s My Party And I’ll Cry If I Want To ?
Well this is My Blog and I’ll moan if I want to . . .
Feel free not to read on.

There are some days when all the positive thinking in the world just doesn’t work for me.
And I want to throw all my self-help books, gratitude lists, motivational, inspirational & philosophical quotes, etc etc etc onto the nearest bonfire.

And just scream :

I hate having CFS
I hate how I have lost so much of my life to it
I hate how it becomes more “normal” to have symptoms than not have them
I hate how I have been in bed for so much of this year
I hate how it is often 1 step forward, then 2 back
I hate the view out my bedroom window – the side of next door’s house, a brick wall.
I hate how the longer you have CFS the more symptoms you seem to develop
I hate how I have been treated by GPs

I hate that I have been taking anti-depressants for such a long time, maybe 8 years.
I actually wonder if they make the “brain fog” worse ? This is an incredibly disabling symptom (especially when trying to work).

I hate how I can’t manage GP visits well, always a disaster. I crumble every time.
I hate how my husband often plays it down to people. It makes me look as if I’m exagerating how bad it has been.
I hate that the house always needs cleaned.
(I can’t manage it without half killing myself, hubby is overloaded with stuff to do, and we can’t afford a cleaner.)
I hate that our grass is always overgrown at front and back.
(Same reasons as above but substitute gardner for cleaner.)

I hate that our central heating system doesn’t work properly (the boiler is approx 40 yrs old). The heating doesn’t heat the rooms upstairs well (bedrooms & my office).
Dreading winter.

I hate that many people seem to think CFS and ME are trivial
I hate that I have no help or guidance managing my CFS.
On my last visit to my GP I virtually begged for practical help. She just doubled my dose of anti-depressants. This was 2.5 years ago.
I hate that I wasn’t strong enough (physically or mentally) to have coped better with the stresses of the last few years. Partly caused by a tenant from hell, a very poor letting agent and scum/bullying tradesmen.
I hate that I cannot get away from my work and have a long long break
I hate that I know how much Mickel Therapy helps CFS, but I haven’t been able to use the “tools” for the last few years.
Everything in my life seems to be working against it.
I hate feeling that I just want to run away from everything at times
I hate how very pathetic this all sounds . . . !
Some days I am totally sick of everything.

I feel quite a lot better now for having this rant.

I am sure it is healthy and positive to let these bad emotions out once in a while. Coping with a long term (mainly negative) situation by just surpressing these emotions all the time – we are in danger of becoming like a pressure cooker. Ready to burst.

We can positive think all we want, but this will not change the practical reality of a physical condition.

To quote what David Mickel once said to me :

” The body is the boss”

ie. it will not be fooled into being told a situation is ok when it’s not.

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 . . . .

Your Jaw Never Gets Tired

Some Days Positive Thinking Just Doesn’t Work

Negative Blogpost Alert !

A Post For Invisible Illness Week

For many reasons :

Anne

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