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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 5 : Newlands Park

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Had a walk in a lovely park the other day. In Glasgow’s south-side.
Its called Newlands Park and is a lovely smallish park. With lots of interesting areas and plenty benches to sit on. It was quiet with just a few people walking their dogs.
It was just heaven – breathing in the fresh air, enjoying all the greenery and some flowers out, and listening to the birds tweeting.
Just heaven.
I need more of this for sure . . . .

Grareful to have such a nice park close to home.

Easter Weekend – what happened to it ?

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I realise I haven’t posted for some time.
The last few years is the worst my CFS and health has been for a long time. And it’s not really getting any better at the moment.
If anything it has possibly been even worse since maybe February-ish.
But to be honest it is hard for me to tell anything for sure.
The “brain fog” symptoms (ie, cognitive dysfunction) are quite possibly the worst they have ever been.
Plus the increased sensitivity to any stimulation (sound, TV, movement, brightness, reading, using computer, etc etc).
And all of this has been very severely disabling.
All I want is proper rest, head and brain rest more than anything. If that makes sense ?
But I remain hopeful, as I have some reasonable days. Even if they are quite few.
I guess I’m just posting this out of frustration, in the hope that I’ll feel better (emotionally that is) once I’ve done it.
And to keep my Blog going – as I  have been neglecting it.
Well, I have been managing almost nothing much of the time.
The smallest thing takes so much out of me, and the time needed to recover from it seems to get longer and longer each time.
So bloody difficult . . . .
But everyone with CFS and ME will know what I mean.
I haven’t managed to get outside the house for nearly 4 weeks now. The Easter Weekend has just passed in the blink of an eye.
Husband had the full 4 days off. I was glad he did – he was well overdue a break and some relaxation. I just wish I had been able to enjoy more of it with him, but have been in bed throughout most of the time.
The thing that has probably disappointed me most was not being able to get out into the garden. Ok, it is a mess out there, no doubt to our neighbours’ horror.  But I would love to have been able to sit outside and feel the fresh air and sunlight on my face.
I love the sun.
However we did enjoy some tasty   Chinese food on Sunday night and a couple of glasses of wine. And despite my ability to tolerate TV being very low just now – we did manage to watch a good film.
So it wasn’t all bad.

Shoes, Shopping & Friends (then Crash)

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I was going to call this post something serious like :

” Managing Post Exertional Fatigue : Life Gets In The Way ”

But as everyone with CFS and ME will know what I mean (and I have no new answers), I decided to go with a more fun title.

It has been a while since my last post, and improvement has been very slight. And very slow.
That endless dreaded post-exertion fatigue.
Can anyone tell me how you manage this thing ?
No – I thought not.

Life just gets in the way, doesn’t it . . ?

I managed to go to Braehead shopping centre one evening a few weeks ago. It was a Wednesday.
And bought a pair of shoes which were badly needed.
To celebrate the successful buying of the shoes I had a coffee in Costa Coffee and some mini-muffins. Ok, a whole bag of 6 which are meant for sharing. Well, they were tiny . . . and I felt I deserved them.

Because buying shoes I find very hard work.
All that bending and trying on. Assuming you can even find your size in the 1st place. eg. In places like M & S where all stock is out on display. But the sizes are often mixed up. Or the standard size range of shoes have had some wide-fitting ones thrown in.
And you get to the stage where your eyes are so blurred you can hardly see the sizes. Or be able to distinguish dark blue from black.
And bending forward to try on just one more shoe makes you so dizzy that you may just topple over onto the floor.

All very difficult . . .

After the coffee I went back to the car and drove over to the Sainsburys, also within the Braehead complex. Just two car parks away.
This was maybe pushing it, but I thought I was revived enough at the time. But with hindsight it was probably a mistake.
(Hindsight : what a great & useless thing this is.)
In Sainsburys I bought 3 items.
A birthday card, a quiche and a box of wine for the fridge.

Once back in the car, and things put in the boot, I knew I had overdone it. That feeling of all strength draining away and aches and pains.
And I still had to drive home.
Oh dear . . .
But I have been there many times before over the years.
And had my “emergency cereal bar” and some water in the car.
After eating the cereal bar, gulping down most of the water, and resting for a while – I felt able to drive home.
Only 15 or 20 minutes, but an unpleasant journey.

The physical weakness and aching muscles (neck, shoulders, upper back, right arm) made it a challenge. Then add in the “brain fog” which seemed to diminish my ability to concentrate, focus, judge distances, stay alert, etc. And of course the always-looming headache kicked in within seconds of hitting the motorway. I guess triggered by the effort it was taking to concentrate thru all these symptoms.

What a contrast to the journey out – just 2 hours earlier. A nice, easy, relaxed drive playing music in the car.

Once home in the driveway I phoned hubby with my mobile to come out and carry in the bags (just 3) from the car. It was all I could manage just to carry my handbag in.
He had 2 friends in who had come over to watch the football (the Scotland v England match).
I was glad they were still in, as had wanted to say hello. They are nice guys and good company, have known them a long time.
But almost every time they have been at our house over the last year I have been upstairs in bed. And not well enough to come down.
This time I was actually up – but knackered !

However, not to be beaten, I went straight to the kitchen. Followed hot at my heels by the visiting pussycat who had been hovering outside. (He was probably waiting on the football ending, as he doesn’t like the TV.)
Had more water and panadol extras – and got hubby to open the wine box for me and pour me a big glass. With ice, as still warm.
Then emerged into the living room to say hello and just sort of melted into a comfy chair.
The effect of the water, the painkillers working, the wine, the comfy chair, and the nice company all seemed to work wonders after a while.
And I stayed and chatted for an hour or more. Until the guys went home. Even had a 2nd glass of wine as I was now relaxed.

After they left I eat most of the quiche (just cold & sliced) as badly needed food. And this was easy, needing no preparation. Not the healthiest of dinners I know. But much better than no dinner at all.

With more hindsight (that word again !), I should maybe have just said hello, explained I was tired and only chatted for 10 mins, not had any wine, eaten food earlier, and gone to bed earlier with a cup of tea.
But I didn’t do that.

The next day the real “heavyweight exhaustion” kicked in big time. Body powerless and a lot of muscle pain. Even my legs were sore.
This kept me in bed for most of the next 3 days – the Thurs, Fri and part of Sat. And had to cancel two sets of plans for the Friday.
Frustrating ?
Yes. Soul destroying at times . . .

This is just part of everyday life with CFS or ME and post-exertional fatigue.
(You can see that “fatigue” is such a lame name for it though ? Totally inadequate.)

Its funny, I can imagine if either of the guys’ wives asked them
“Oh, how was Anne ?” – they would probably have said something like :

She seemed fine

or

She was in good form, chatting away

or even

She had a big glass of wine & gave this bloody cat that appeared from nowhere a saucer of water – while we were sitting gasping for a 2nd cup of coffee !
(Sorry about that . . . )

Well I haven’t worn the shoes yet.

But, overall it was still a good day.

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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Boom & Bust

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Does anyone else feel their lives are a continual round of energy highs and lows ?
Or the “boom and bust” as its often known as.
Its so frustrating isn’t it ?

Last weekend (Sat evening) I went to a party. And my last post was about this.
To give myself the best possible chance of being ok for this party, I had to rest as much as possible for a few days before it.
In effect I took 2 days off work.

This paid off in and I made it to the party and had a really good night.
The next day was “lost” because of the very late night (5 am) and the amount of wine consumed ! But that was ok. To be expected really and I didn’t mind this at all.
It was a 50 th party, and not an every-day event.

What was annoying was the awful energy “crash” that followed.
The party was on Sat, the expected hangover on Sunday – just a headache and tired. And the headache was a normal, to be expected, headache. And the tiredness also the normal, to be expected, tiredness when you don’t get to bed until 5.30 am.
So that was ok. An accepted price to pay in my eyes.

But on Monday the slump, crash, payback, or whatever you want to call it set in.
More formally known as post-exertional exhaustion/fatigue/malaise . . . .
And for the benefit of any non-sufferers of CFS or ME reading – this is a type of tiredness or exhaustion that is not natural or comparable at all.
It is horrible.

Being Easter Monday, I didn’t stress or beat myself up over the fact I would likely lose the whole day, and get no work done. (Not that I would really want to work on a bank holiday, but remember I had avoided work since Wed of the week before.)
Anyway I think this helped me avoid the worst of the CFS headaches that often come on when I’m under stress.

But the tiredness . . .
It was much worse, totally different from the previous day. I felt like I was wearing pyjamas made of lead. I don’t actually wear pyjamas but you get the idea . . . Body powerless, weighed down. And my head/brain felt like I had been drugged.
Totally incapable of anything.
This lasted all thru Monday and affected most of Tuesday too.

By Wed I had to get some work done – as it had been left for a whole week by then.
And so – back into the vicious circle of the mini boom and busts !

Oh well – nobody said it would be easy, did they ?
In the opening line of one of my favourite books The Road Less Travelled by M Scott Peck, he states :

” Life Is Difficult ”

But I did enjoy the party and lasted an amazing 8 hours at it . . .
Ha !

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.

A Decent Weekend

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Well the weekend past was reasonably good I guess.
Friday was a write-off – a bad CFS day. But nothing unusual at the moment.
On Saturday – the symptoms and exhaustion eased off by early evening. (Thank goodness . . . )  And I treated myself to a nice slow bath. Well it was certainly slow. As the whole business of shampooing hair and then rinsing by using a plastic tumbler of water was like something from many years ago.
And nice ?
That may be stretching it a bit. More awkward, as it is a very small bath. In a smaller than average bathroom. For me to lie back and stretch out fully – I have to put my feet on the wall above or beside the taps. Am I very tall you may be asking ?  NO ! Just 5′ 2″ without shoes.
Also trying not to bang my head against the wash-hand basin above (slightly overhangs the bath) is another challenge.
But it was warm and I am finding it easier than taking a shower just now. Slightly less exhausting and I tend to recover a bit quicker afterwards.
      Later had a very nice dinner which hubby cooked. Well, bought from Tesco and put in oven. But much appreciated. Very tender lamb shank, slow cooked with loads of veg. And some Prossecco wine. Just lovely. Followed by some chocs which were a gift from a friend. And a well appreciated gift too – as I had been in need of cheering up !

Sunday –  and I actually got out of the house. 1st time for 21 days. Yes I have been counting – as this keeps happening. (My work is killing me.)
Went for a early evening pub meal with hubby.
Now we didn’t exactly push the boat out here. We went to a local J D Wetherspoons pub and had the “burger meal deal” – which was something like 2 burger meals & 2 soft drinks for £7.99 (in total). I enjoyed it though, as was great to be out the house.
Later once back home, just relaxed and watched some tv. With 2 small glasses of wine. And finished off those chocs.

Simple pleasures . . . but nice.
And I am very grateful for them.

Must break the Vicious Circle

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I hope this week is better . . .

Last week did have good and bad bits of course – no one week is all bad. But from Wed onwards I guess I had pretty much crashed again have had been exhuasted most days. Didn’t get any work done at all in the whole of last week – but I lost a lot of sleep (and energy) worrying about it. And with due cause . .
Plus I haven’t been outside the house since last Monday night. Only being out of the house once a week (if even that) has become a common pattern over the last while. Months maybe – not even sure. The reason for this is not because I don’t want to go out, have nothing to go out for, or am depressed (as no doubt my GP would try to suggest). It is simply because I don’t have enough energy left over after working and/or doing house stuff to be able to get out.
But it is a bad pattern – and so difficult to resolve.
Even if I sort of force myself to leave work aside for a day (and not because of the CFS being bad) – and go out to do something nice – it is hard for me to switch off from work stuff – as there is always so much outstanding. And it keeps causing more problems when left too long. Always has a financial knock-on. This in turn causes much stress which = worse CFS which = me not being able to work . . . etc. Then I get so stressed and exhausted about it all that I find it hard to be able to even think of things that are nice to do !
The whole vicious circle over and over.

But I am starting this week on Tues as a local B Hol here yesterday – and I slept thru most of the day. Well was in bed – not always sleeping. More going thru dozens of stuff that I didn’t get done last week and trying to mentally organise what order to do them in today. This of course achieved nothing – for one I didn’t write any of it down. And I remember little if its not written down.

Anyway thats enough moaning.
To try to take small steps towards breaking this vicious circle – I am going to try to do :
one nice thing for me everyday.
And it has to be something that does not involve me thinking or analysing or learning stuff. eg. if reading a book – it MUST be a fiction story. And not eg. a book on how to improve my time management or one of my vast collection of self-help books !

I’m writing this here today on my Blog – in the hope that it will help me to stick with this. As I have tried things like this before – but couldn’t stick to them. NB. Anybody who has done (or is doing) Mickel Therapy will recognise this as being part of applying Key 3 – one of the Mickel Therapy “tools”.

Today’s nice thing is :
Go out for a coffee and buy a magazine that I want. Probably to the Silverburn Centre.
Midday or during the afternoon.
No later – as I will be so sucked into work stuff by then I either won’t be able to leave it. Or – just as likely – I will have CFS symptoms by then which will make it too hard. eg. headache, sore neck, feeling too weak, etc.

So I must do it. For my own good.
Going for morning tea & bagel now.

A Good Weekend

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Well this weekend was good.

Not that I did anything mega exciting but it was the 1st time I had been out then house properly during the daytime for 3 weeks !!  Did some walking and got fresh air.
3 weeks – how does this happen you may ask ?
Well in CFS or ME land it is unfortunately all too common at times. And the last few weeks have been a bit difficult.
But won’t dwell on that now.

My husband came to take me out both days and did all the driving around.

We did some perhaps dull things like go to B & Q, and shops etc – but even this I enjoyed (up to a point. . . ) as I was glad to get out.

Today was the best of the 2 days.

We had a nice long, slow, peaceful walk thru Kelvingrove Park in Glasgow’s West End – and even around some of the streets in what is called the Park Area just into the West End.
It is full of the type of properties I love – old traditional houses and flats from victorian times.  All so distinctive – the lovely detail in the buildings and the big windows. I find it relaxing just looking at them.
Then we found a cafe within the park and had a nice coffee and a break.
We did other things too but the time in the park I found the most rejuvenating – physically and mentally.

Its now evening and I’m a bit tired.
But its more like a natural tiredness – rather than that awful CFS/ME tiredness which really is beyond description.
Hubby is still here – and we’re just going to settle down and watch some TV now.
And will have a nice glass of chilled pinot grigio wine.

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