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The Lonely Landlady

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The Lonely Landlady
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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 . . . .

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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 . . . .

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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.

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