Wednesday, 30 October 2013

Update Número Trois: Supercalifragilisticmyalgicencephalomyelitis...

I realise there's  nothing super about Myalgic Encephalomyelitis but, hey, artistic license and all that. Plus, I promised you at least one snappy title. 

For snappy read: a big hulking mouthful of a title.

You're just going to have to work with me on this...

So, yes. I still have M.E.

Update done!

Just kiddin'....

This will, however, be a fairly short one (is that a sigh of relief I can hear at the back?) as, to be honest, not an awful lot has changed.

I'm still perpetually exhausted; still cerebrally challenged; still experiencing an assortment of aches and pains in far flung places.

I acknowledged my One Year anniversary back in August. I would say celebrated, but it's not really much of a cause for celebration is it? One whole year of feeling like total utter poop, with no discernible end in sight.

Yep, no need to bring out the bunting for that... 

As well as pacing, specialist appointments, and theory courses, I've also been on a seemingly endless rotation of sleeping tablets.

It wasn't so much trial and error as just plain error. After error, after error...

I was advised, after the third attempt, that perhaps, at this point, a rubber hammer might be more effective in knocking me out.

So, no more drugs for me. But still no sleep either.


Well folks, that just about sums up where I am, right-this-very-minute, with the whole M.E. thing

It would be disingenuous to call it a 'journey'. That would a) be too complimentary, and b) imply there was a destination, a terminus, an end point. Which, of course, there isn't.

Unless it's hell.

Now you mention it...

Monday, 28 October 2013

Review: Lush Rose Jam Shower Gel...

Having finally used up my much loved bottle of Lush's Snow Fairy it was time to invest in a new shower gel.

After sniffing most of the offerings in Boots, a thought occurred to me: why not head to Lush?

Granted, it wasn't exactly a revolutionary thought process but I'm surprised it hadn't popped into my head sooner given my Snow Fairy adoration. 

So, off to Lush I went...

... where I was greeted by the lovely Hannah (Hellooo!) who introduced me to the newest addition to their shower gel family: Rose Jam.

Oh my.

The best way to describe the scent? Fry's Turkish Delight in a bottle. 


According to Lush, Rose Jam contains rose absolute; vanilla pod; geranium oil and goji berry extract. The soft floral notes of the geranium and rose are the perfect counter-balance to the vanilla pod, which manages to escape that cloying, sickly sweet smell that I find a lot of other vanilla products are guilty of. 

As for in the shower? Total dream to use; not only does it smell divine, it also leaves my skin feeling incredibly soft, like I've slathered on a vat of moisturiser. That'll be the argan oil then, I'm guessing.

Would I purchase it again? Yes. Would I recommend it? Yes. Do I want to devour a bar of Turkish Delight after every shower? Er, that would be a yes too...

        Lush Rose Jam is available in 100g, 250g and 500g.


Sunday, 27 October 2013

Update Número Deux: One Lung or Two?

If you've been reading this blog since its inception, it probably won't have escaped your notice that my lungs are a bit, well, broken.

As in: humongous-black-voids-of-nothingness-where-there-should-be-alveoli-and-stuff* broken. As in: a-total -lung-capacity-of-less-than-35%-and-that's-on-a-good-day broken.

Yep, like I say, broken.

Since my untimely entrance into the world it has long been debated how best to tackle my condition.

The thing is, you see, I was a rare case. They simply did not know what to do with me. As for a prognosis? It wasn't so much bleak as non-existent. There was no literature, no bench mark, no precedent. I was the precedent.

Aside from prolonged incubation, cocktails of drugs and, later on, oxygen therapy, all they really had to offer me were non-committal shrugs and a distinct lack of answers. In the meantime, however, we must 'wait'.

And if I wasn't waiting for answers, I was waiting for appointments; waiting for tests; waiting for results; waiting to see this Consultant, or that Specialist.

My entire life has been one big waiting game.

It was mooted, when I was around three or four, that perhaps I should undergo a lung transplant? Almost as soon as the suggestion was raised, it was brushed aside. Too risky, too invasive. Perhaps as a very last resort. Maybe.

And that was that. It was never discussed again.

Until May this year.

I'd been referred by my GP to our local respiratory team, just as a precautionary measure, for an elevated heart rate coupled with extreme shortness of breath. Which is to say, more short than usual.

I didn't really think anything of it as I waited (more waiting...) patiently for the consultant to call me in.

It was a gentleman I'd never met with before and my first thought upon seeing him was 'but, he looks exactly like Hercule Poirot...' followed swiftly by 'hang on, what's David Suchet doing here...why's he moonlighting as a Consultant Respiratory Physician? Did he secretly retrain or something?'

I think it must have been a good half a minute before I stopped staring.

The poor man.

Once I'd got over the my-new-consultant-is-in-fact-a-fictional-Belgian-Detective shock I obediently followed him into his office.

To be told that, having looked at my scans and (many many) lung function tests, he felt I was in need of a lung transplant. Within the next five years.

This shock was not nearly as much fun. In fact, I cried. A lot.

The poor man.

It was only ever meant to be a last resort. It was not meant to happen in the next five years.

He talked about suitability, pre-transplant assessment, waiting lists...

Somewhere between 'you'll need a transplant' and 'an Echo-cardiogram has already been ordered to rule out Pulmonary Hypertension' I stopped really taking anything in.

Before I knew it, I was being ushered out with the promise that a follow up appointment would be set for a few months' time and the situation would be assessed again.

Three months', two Echo-Cardiograms, one Electrocardiogram, and a whole heap of heartache later, my appointment finally rolled around.

The good news was: he still looked like Poirot (hurrah). Oh, and I didn't have Pulmonary Hypertension (double hurrah).

The not-so-good news: my lungs were still rubbish.

In fact, so rubbish that, if I didn't opt for a transplant, he estimated I'd only have ten (count 'em) years left to live. And that was him being generous.


On the plus side, he felt I was an ideal candidate for something called Lung Volume Reduction Surgery. This suggestion was not wholly new to me. My previous consultant had alluded to it a couple of times over the years but, again, only as a 'down the line' kind of thing.

Clearly, I was now down that line.

And instead of taking a scalpel to me, he discussed a new type of LVRS in which valves would be fed into my airways endoscopically via a Bronchoscope. In fact, it would go a little something like this...

The valves would prevent air from reaching the parts of my lungs that are, essentially, dead, thus causing them to collapse in on themselves and reduce the overall volume. The remaining, healthy(ish), lung tissue would be used much more efficiently with nothing going to waste.

And this, dear readers, is where I am now. With this minimally invasive procedure on my horizon in the next year or so. Of course it can only ever be an interim measure, a stop-gap, before the real deal, but at least I get to keep hold of my lungs - every rubbish bit of them- for a little while longer.

Every cloud!

*Actual medical terminology. Totally.

Friday, 25 October 2013

Pyjama Party...

It may have taken me nigh on a year, but I finally, finally, have my very own pair of Hush pyjamas.

These beauties arrived today...

Along with some cable knit socks. Naturally.

Roll on the cold winter nights...

Update Numéro Un: We Bought A Zoo...

...Actually, that's a complete lie. 

We didn't.

But? We did buy this:

Yep, that right there is our house. Our actual, very own, slice-of-the-property-market-and-have-an-eye-watering-mortgage-to-prove-it, house.

It had originally been on the market at the tail end of last year but that sale had fallen through.

We viewed it and put an initial bid in back in March, but it was turned down. So we upped it. And upped it again. Nothing doing.

And that, so we thought, was that.


Two weeks after the second failed bid the Estate Agents got back in touch with us.

It was going back on the market. Were we still interested?

Yes. Yes we were.

Our offer was officially accepted on the 22nd of April and on the 15th of June the keys were ours.

And then the fun started.

It's been four long months of stripping things off (wallpaper, people), knocking things down and putting things up, but I like to think of it as a work in progress...

In spite of some of the rooms still having the air of an abandoned building site to them we are truly in love with our little home.

Best. Purchase. Ever.

Thursday, 24 October 2013

Guess Who....?


You're probably wondering who I am aren't you?

Yes, it's me: prodigal writer of this here blog. I can tell you're shocked, you thought I'd disappeared off the face of the earth didn't you?

Nope, still here!

When I said, way way back in the mists of time (well, May, actually...), that I was going to be taking a break from blogging I didn't expect to be gone for so long.

Who knew six months could disappear in the blink of an eye?

Over the past week or so I've been feeling an urge to get back on the horse (as it were) and put digits to keyboard once more.

And, so, here I am.

What's new I hear you ask?

Rather a lot.

In fact, a lot a lot.

Far too much to mention in a single entry so, in the interest of preserving your, erm, interest I shall update you in a series of posts.

I'll even try and come up with some snappy titles for them. If you're very lucky...

Ah, it's good to be back.