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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
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 . . . !

Gratitude 1: Daffodils

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At last, 1st gratitude post and photo. Just as well I didn’t say I would do this every day . . .

Daffodils
Arrived in Asda order at weekend
Yellow – lovely and bright
Summary and uplifting

Short post as pretty exhausted today.  But wanted to get a cheerful post onto this blog.
Less is more sometimes

The Real Face of CFS . . . . reblogged

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http://wp.me/p2E7tJ-8N

It’s 12th May and is ME Awareness Day and I haven’t managed to do a new blog post for the day. Although I did want to . . .

But I would still like to do something to join in the spirit of the day.  So I’m just going to publish the link to a previous post I did last year which was quite popular and got a lot of hits at the time,   ie  :

“The Real Face Of CFS”

NB. The bit where I said I thought I was getting slightly better – well that didn’t last long unfortunately.
Still struggling at the moment.

But seeing all the comments, links and blog posts that fellow sufferers have already posted to Twitter this morning is inspiring and uplifting.
And it reinforces that I am certainly not alone.

Apologies for taking a lazy option here,  especially when so many others have gone to a lot more effort.
Better than nothing though . . .

Some Days Positive Thinking Just Doesn’t Work

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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.

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 . . . .

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 . . . .

A Party : Not easy but got there !

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On Saturday night I went to a 50th birthday party with my husband. It was such a good night and I was glad I managed to go.

Actually to say it was a good night is an under-statement.

It was a marvellous night.

So much so that we arrived at 8.30 pm and stayed until 5.00 am !  At least that’s what I’m told, as my memory of the time is slightly hazy . . . .
Now I will just mention here that we were not the last to leave. There were a few others still there after us.

The hosts were very generous with wine, and numerous other drinks. Plus champagne. And a mouth-watering selection of food and desserts. They really had pushed the boat out to make it a fab night.

I enjoyed so many things about the evening :

– Seeing and talking to friends I hadn’t seen for ages. (The closest friend there I hadn’t seen for over 12 months.)

– There was such a nice, and mixed, crowd of people. Quite a few I had met before, and quite a few I hadn’t.

– It was great chatting with new people too.

– After midnight the Birthday Girl opened the presents and cards guests had brought along – and this was lovely. Such a warm part of the evening. And nice to be part of it.
I actually felt a bit tearful at one point. (Good grief, I do need to get out more .)

– It was nice to see my husband relaxing and enjoying himself too. He was well overdue some fun time.

The next day I had a well-deserved hangover. Just a nasty headache (and tired of course). But I couldn’t complain about this at all. As totally self-induced with wine and the very late night.
But it was worth it.

These nights don’t happen every week after all.

– – – – – –

During the party there was one moment when I felt a wee bit sad though. But just very fleetingly.

It was during the present opening.

I counted 16 of us gathered round. All women, as the men had slunk off for more drinks and were milling around in the kitchen, hallway, etc.
Anyway at one point I was just watching and observing everyone – and enjoying being part of it.
But I briefly wondered if anyone else had to plan and weigh up so much stuff.
Just to be able to be there that night.

To explain :

I had to be very careful with what I did for two days before to give myself the best possible chance of having enough energy on the day.
This meant, crucially, avoiding doing any work as far as I could on Thursday and Friday. As this makes me pretty unwell some days.

But even with doing this, come Saturday my CFS was still making me struggle.

I had planned to have a shower very early in the day, as sometimes have needed hours to recover my strength after it.
A good plan, but it didn’t happen.
So I had the shower a bit later, still giving myself plenty of time.

But even after resting (again) for ages afterwards I had to accept I wasn’t going to be able to iron anything to wear. Or wear a bra, as my chest was still pounding and I still felt quite out of breath.
I have always hated bras anyway, but wearing one is totally out of the question when I feel like this.

So I was limited to wearing things that didn’t look too dreadful unironed. And a top that could be worn without a bra without being too obvious (if you know what I mean ?)
Then it had to be trousers, as I had no new tights.

So I ended up wearing black pinstripe trousers – as they didn’t need ironed. With a greenish top which unfortunately wasn’t plain, but had a swirly pattern – because it was the only one that didn’t need ironed. And could be worn without a bra.

Then it gets even worse.

I had no panties left to wear !
(Everything was in the washing basket as I haven’t been able to do any washings recently. And the last ones had gone in at the end of the day before.)
So I ended up wearing panties that were part of a bikini set I would have worn on holiday abroad maybe 7 years ago. And are now a size too small.
The bloody things were “pinching” me all night and I had to keep fighting the urge to adjust them . . .

Then I had my very overgrown hair to deal with.
(Not managed to the hairdressers for 15 months.)
But had no energy left to “do anything with it” . So took a hairband along in my bag – and did resort to putting it on later in the evening when I just couldn’t bear my messy (but clean) hair anymore.
And the colour of the hairband ? Leopard skin pattern . . .

So I didn’t quite look the way I’d have liked. Quite a mismatch of patterns.
But I hopefully managed to look reasonably ok. Fairly bright-eyed and clear skin.
Probably thanks to all the water I drink.

And I probably gave a good impersonation of someone who didn’t have CFS.

But I wondered if anyone else had to take two days off work before the party just to be ok for it.
Or have such a struggle with basic stuff like clothes.
Or would possibly suffer from post-exertional exhaustion a day or two later as a result.
(Which I did on Easter Monday – and this is a totally different thing from a hangover. Was like wearing pyjamas made of lead and being drugged.)

– – — –

But these thoughts only lasted about 30 seconds, as I was enjoying myself far too much to dwell on this.

### I’m only adding this in to explain to any non-sufferers of CFS (or ME) reading that we may look fine – but it isn’t always easy.
And we often pay for it afterwards. ###

It was still a great night though.

Need to “Get It Out”

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I have decided to start this blog to write about my experiences of living with CFS for a long time. Partly to spare my husband and friends from having to listen to what probably sounds like a lot of moaning and whining. And also to de-stress myself and “get it all out”.  For a long time I have thought I would like to write a book. But this could take years – and I need to start writing now – to prevent me having a stress-induced nervous breakdown !

My thoughts are not really in any logical order – so my posts will just be pretty random. Of experiences and memories both recent and going back over the years.  And I would love it if people with CFS or ME would read it – as well as non-sufferers, friends, etc.  But even if nobody reads it I don’t really mind. As I have to do it for myself – to start to get all the anger and frustrations of the last 20 years or so out of my system.

But its not all going to be negative stuff – honestly – there will be funny stuff too !  And though I may mention my property work from time to time – it will not really be about that.  I plan to start a different blog about that.

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