No more – it stops now

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One of the awful things about CFS and ME is the way people treat you at times. And I’m not just talking about medical professionals.
Unfortunately people who are friends and family can treat us quite poorly at times.

I have used up vast amounts of energy over the years trying to cope with this. Trying to make allowances for the way other people behave.

I have exhausted myself trying to :

– To rationalise it.
– To understand it.
– To excuse it.
– Making allowances for it.
– Agonising over it.
– Trying not to upset others by speaking my mind.
– Apologising for myself.
– Avoiding any awkwardness involved in  asking people ” Why ? ” .
– Putting others’ feelings 1st.

Basically accepting treatment/comments from people that would be unacceptable to them.

But no more.

Two nights ago I had a conversation with my husband about this. As something had been making me feel upset.
We have had this type of conversation a  100 times over the years. And it is pointless.
He loves me, but just doesn’t “get” why I feel so upset at this stuff.
And this is despite reading a book I had begged him to read during the time we had to live apart during 2012.

The book was called Shattered by Lynn Michell. 
It covers all the hidden misery of CFS and ME.  The emotionally painful dealings with friends and family (as well as doctors).

Yesterday I turned to Twitter to vent my emotions. And had a bit of a rant. This was very theraputic. And it lifted my spirits no end.

Within a 2 hour period I got lots of lovely messages. All supportive, encouraging, empathatic, understanding.
It restored my faith in human nature no end.
PS.  I’m sorry I didn’t manage to reply to any of the messages. I was just too exhausted.

But it made me realise that the way people behave – is the way they choose to behave.
Regardless of whether they don’t really  understand what CFS or ME is like – it makes no difference.

People still know the difference between being nice, or not.

So I am not going to waste any more of my energy excusing crap behaviour. My energy is too valuable (and too limited just now) for this stuff.

It also occurred to me yesterday that many people have a deep predjudice about CFS and ME.  Maybe not realising it of course.
But it is viewed very negatively.

### From today I will no longer allow this to be my problem ###

Big words . . . .

And of course it will be easier said than done.
But it can’t be any harder than accepting poor treatment.

Nearly every CFS or ME sufferer will know what I mean.
To everyone else – just ask yourself how you would want people to treat you. Or more importantly – not treat you.


Should Life Be This Hard ?


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.
– Many/endless 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.

Jamison Writes

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