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I Wish . . . .

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I WISH FOR :

To be walking on a beach, feeling the warm sand under my bare feet
To feel the sunshine on my face
To be near to water, looking out at a huge ocean, all the greeny blue water
To see the calmness of the hills, their stability
To swim in the sea, or even just walk in it and feel the water around my legs
To sit outdoors and lean against a big solid tree, eating a sandwich, looking up at the sky

To sit on a balcony early evening, looking out at a view of water and hills. And faraway houses.
Maybe with a nice glass of chilled wine
To feel the warm evening air flowing thru my loose hair
To eat a seafood salad in an outdoors cafe, perhaps looking onto a quiet beach
To be able to read a good book and just lose myself in the story
To listen to calming beautiful music

To be very far away from all worries, all insecurities, all fears about the future.
Just for a while  . . . .
Not asking for a perfect life – but just for some things to get a little easier.

Bankruptcy for me has been absolutely no relief whatsoever. It has been brutal.

It has replaced some stresses with different stresses and worries which seem to be keeping me quite unwell. And I suspect the sheer trauma and impact of it all may have made some of my symptoms even worse,
eg, severe brain fog (aka cognitive dysfunction or brain dysfunction)
headaches, and hyper-sensitivity to things like noise, light, using laptop, mobile, watching TV, even listening to music

Hey Ho, nobody said life would be easy . . . .

I crave the company of people who are :

gentle
calm
kind
have empathy and compassion for others
understanding
non-judgemental
are willing to learn, to listen
have varied interests
have a good sense of humour
don,t have rigid black and white opinions
have had life experience which has given them an open mind

I need to avoid people who are :

ignorant and unwilling to learn
abrupt
sarcastic
(sarcasm when aimed unfairly at me is absolutely lethal for my ME, an instant trigger for all my symptoms escalating)
people who make fun of, or laugh at, others’ limitations, or problems
people who make jokes about things that are not at all funny
people who know what upsets me, and my weaknesses, and take pleasure in “pushing my buttons”
(it always works – and I get upset every single time)
have rigid, unbending opinions
who get bored easily – there is so much in life to experience (how can people get bored . . . ?)

But I guess we would all like these things . . . !

Re-blogged : Hip Surgery and ME: Society Has It Wrong

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I had to reblog this post.
It is from Jeannette Burmeister’s blog which is called
http://www.thoughtsaboutme.com.
And it is written by her husband Ed Burmeister.
It is about one of the worst, most painful issues, encountered by people with ME.

Thoughts About M.E.

I am proud to share a note that my husband, Ed Burmeister, wrote last week. He initially posted it on Facebook only where it received a lot of attention and was shared more than 250 times. It really resonated with the community.

Therefore, I talked him into allowing me to post it here as well. I am blessed to have such a supportive and loving spouse.

Last Wednesday, I had a complete hip replacement.  It was a short procedure (1-1/2hours). No general anesthesia required.  I was out of bed the day of surgery and home after two days.  On Monday, I started driving again and really could have done so on Saturday already. Yesterday, I returned to work. I was comfortably working away, largely free of pain.  I walk without a limp and with no assistance and am pretty much unrestricted in my activities. I never needed narcotic painkillers after…

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#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 . . . .

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.

Things People Say (just don’t do it)

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” If you‘re too tired you just don’t do it – it doesn’t sound like rocket science “

This was a rather impatient comment from a friend.
I was trying to explain to her how difficult it can be to do or complete things with CFS. Not because I wanted to bore her or to get sympathy. I just wanted her to understand why I can’t always manage to do things at times, or need to stop for rests. And crucially why I have often had to cancel arrangements with her after doing too much the day before.

But she couldn’t get this – and I was trying to explain how it is often impossible to tell in advance with CFS what is “too much” until after. Sometimes hours later or more often the next day. Either way too late. And how CFS fluctuates so much therefore can make it very hard (if not impossible) to tell what is going to be “too much” on any particular day.

But I got the impression she was bored and impatient. Hence this comment.
Re the “you just don’t do it . . . “ – gosh, where do I start !

I mean how do you “just not do it” when :

a) In middle of trying to cook dinner : do you just leave it to burn and go to lie down ? Or remove from heat and abandon it half-cooked to just throw out later ? Or are you more likely to push yourself on to try to finish it ? (So you have something to eat !)

b) Driving on a busy road or even motorway – you can’t normally just stop when you feel yourself getting weak . Usually have to keep going on for a bit at least. I mean you want to try to get home.

c) In middle of having a shower : do you just turn off the water and get out to rest maybe half-washed with shampoo still in hair ? Or do you keep under the running water but just stand and rest arms etc for a while ? In which case the water will probably run cold (as not an electric shower).

d) In the middle of a long difficult phone call perhaps with an Indian call-centre : do you just terminate the call mid-conversation and hang up ? Knowing that you will still have to make that call and start all over again. Or do you push on to attempt to complete the issue you have called about ?

e) When an online grocery shopping is delivered : if too tired/weak to put it away – do you just leave it all out in the kitchen ? In which case the frozen stuff will defrost and the fresh stuff may go off if its a hot day. Or do you try to push on to get it all packed away even though energy is poor ?

These are just a tiny amount of examples of day to day difficulties. I can only do my best – but do often end up with that energy “crash” a few hours later or next day. It just isn’t easy – even after all the years I have had CFS.
I just sometimes wish that people would be a bit more patient and try to understand.

A Small World

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Right now I feel as though my world consists of 2 rooms upstairs in my home – ie. my bedroom and my office (which is in the next bedroom). And my day to day life is just : work – exhausted/CFS worse – then sleep.
Then more of the same.
But at least I do have the luxury of working from home and for myself. Which is just as well as some days I work very badly or slowly. And some days I don’t manage at all. But thats nothing unusual with CFS – it just wouldn’t be much good to an employer !
The biggest problem I have right now is when I try to have a decent break to allow my CFS to get a bit better – all the work problems escalate. (I always have a backlog as its hard to get on top of things.)  After a few days off I will feel rested and stronger – but then have to face problems that have resulted from me missing things that maybe had to be done by a certain time. And with it being property – almost everything has a financial penalty or cost of some sort. This then causes more work and problems . . .  and a lot of stress.
An awful lot of stress !
So I seem to be in a vicious circle which is hard to get out of.
But I have to keep going – no other option. I did choose to get into property because I have CFS. (Realise that will sound odd and will explain more in another post).
I never expected it to be easy or a short-term thing. But right now it is quite a struggle.
Its difficult to get any balance in my life – like doing nice things eg. actually seeing people, friends, actually getting out of the house. Even just watching TV or reading would be nice !
I seem to be cancelling things more – or just not making any arrangements in the first place, as I know there will be a high risk I will have to cancel if not well on the day.                                                                                                                       So its not easy at the moment – but I will get there.

NB. I’m not looking for sympathy here – I just want people who know me to understand. Because I don’t think very many people do ?

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