I still have it...

It was around 14 or 15 years ago I was given the label, CFS/ME – Chronic Fatigue Syndrome – after a good couple of years of trying to get to the bottom of why I was so bloody tired all the time.

Initially I was delighted that my unexplained condition was recognised, and I could no longer be accused of just making it up to disguise some form of laziness.

However, because CFS/ME is a diagnosis by omission, it means the medical profession have no idea what causes it, and therefore no idea how to cure it.

Essentially you are given the usual raft of tests, but nothing shows up: the body doesn't appear to be producing extra white blood cells to fight off infection, you're not lacking in vital minerals or vitamins, you're not suffering from sleep apnoea, there are no rashes or raised temperatures, and so on.

So with nothing being flagged up, and no other indicators of known illnesses, they run out of things to look for and at that point, give you the CFS/ME label.

It's a way of saying, “we accept something is wrong – we don't think you're making it up – but there's bugger all we can do about it so now go away and live with it. Oh, and if you need some anti-depressants to cope, just give us a shout...”

Over the years, by being a bit more careful with my diet, doing all the sleep hygiene stuff (no TVs, tablets or phones in the bedroom, for example), and trying to use meditation and mindfulness techniques, I've lessened the all-consuming intensity it originally had on my life.

But it has definitely not gone away and it's effects and impact are felt and dealt with every day of my life.

However, we humans are extraordinarily good at normalising, and on not so bad days I can sometimes wonder if I am just making a fuss about nothing... until suddenly I crash, the brain fog descends, and I can barely string a sentence together through slurred words.

Still the nagging doubts have persisted.

What if the doctor who originally diagnosed me (now retired for over a decade) had missed something more obvious?
What if there are new tests that can pinpoint what is actually causing my symptoms?
What if there are new treatments that could dramatically improve my quality of life?

With this in mind I went back to see my doctor this week. 

I've not actually seen her in person for several years because apart from the Chronic Fatigue there's never really been anything else wrong with me. The B12 jabs I have every 3 months, and the pint of blood I have removed a couple of times a year because of my haemochromatosis (both discovered in the original search for what was wrong with me, but neither actually having anything to do with the CFS/ME), have only required interaction with the nurse.

After chatting with the doctor for a wee while, discussing my symptoms and my desire to revisit the diagnosis, she said she was as convinced as ever that CFS/ME is what I have. In particular, the fact that nothing new has developed over the intervening 14 years was a pretty good indicator that it wasn't anything else that had been missed. If it had been something else, then it would have got worse to the point where it would have become more obvious what it was.

Still, I'm in my mid-50s, so now is probably a good time to have a men's health MOT and have a thorough check up for all the usual stuff, so that's been booked in for the not too distant future.

Perhaps something might show up, but it seems unlikely.

So if I turned up fresh today with all the symptoms I have, I would still be given the CFS/ME label.

The only hope is the appearance of Long Covid, which is incredibly similar to CFS/ME.

Basically the medical companies don't invest in research and development unless there's a profit to be made, and there have never been enough people with CFS/ME (or even enough acceptance within the medical profession), to make it worthwhile spending the millions or billions required.

But with so many more people around the world suffering from Long Covid, it might just start to become a possible money maker for the company that can find a cure.

And if they can do that, there's a damn good chance it would work with CFS/ME too.

Meanwhile, I'm left with complex feelings over this visit to my GP.

On the one hand, I definitely have CFS/ME, so maybe I can now let go of the imposter syndrome fear that perhaps it was just something I subconsciously made up and there's nothing actually wrong with me.

On the other hand, I still have CFS/ME and it's not going away any time soon, if ever, so I will continue to have to live with the impact of the symptoms on a daily basis.

And that's not an easy thing to feel OK about...

Creating a "best of" collection

For a long while, I've wanted to have some kind of "best of" collection available online, of the photos I've created since turning professional well over a decade ago.

You'd be surprised just how difficult it is to curate, when I have literally thousands of fully edited photos littered across hundreds of folders scattered over several hard drives.

I came across a folder where I'd attempted this once before - back in 2014. Nothing had been added since, and many of those in there I no longer consider worthy of display.

Then there's the issue of where to put them?

I remember having a debate with my web designer when I'd enthusiastically told him I wanted to have galleries - lots of galleries! He very firmly told me that actually, on my website, I only needed enough images to demonstrate to potential clients that I was worth contacting for a business enquiry, and that I shouldn't overwhelm and confuse them with hundreds of photos.

He eventually won the argument.

But it's never stopped me having a nagging feeling that my photos are too spread out. If someone wanted to really look at more than a handful, they would have to keep hunting and scrolling across multiple platforms.

Even Instagram, where I've uploaded many over the years, just displays everything in square format until you click on the image. 

And very few of my photos are square, so they never look quite right on that 3x3 grid.

Then I remembered Flickr - it was one of the original photo sharing sites, and back in the early days I did use it quite frequently to display my images. But as Facebook and Instagram became so dominant it slipped away into fuzzy memory territory.

However, it's still actually going, and my login details still give me access, and I'm allowed up to 1,000 photos on a free account.

And it has the added advantage of allowing you to sort your images into albums.

So for the past few days I have been finally creating the online gallery I've always wanted.

I don't expect anyone to stumble across it accidentally, but I now do have a place I can point people to if they'd like to see over 350 of my favourite creations, or wish to explore albums such as "Narrative Photography", "Portraits", "Black and white" or various collaborations.

It contains a few photo shoots I've never quite got round to blogging about, so you may well find something new - especially as I've put all the images in reverse order, with the most recent first and the oldest ones at the end.

These are purely my favourites. Others may well have chosen differently, but for whatever reason each of the photos here are ones where I can look on them with a certain level of internal satisfaction.

Click on this link to explore - https://www.flickr.com/photos/kimayres/

It doesn't include any of my not-people photography - flowers, insects, macro, landscape etc. At some point I might have to create a separate account for them...

56

Looking back at last year's post about turning 55, I realise the world has moved on a bit.

None of the cafes have barriers between tables, or people serving while wearing masks, and the whole general sense of going out feels more pre-Covid than than anytime in the past 2½ years.

Having said that, if I have to open a door to a building with my bare hand, or someone shakes my hand, I still don't feel comfortable touching anything else until I've had a squirt of hand gel.

Is it simply being precautious, or has an element of OCD crept into my way of being?

Plans for a picnic lunch and an afternoon Mocha were cancelled because the guy fixing our stove promised he would be round that afternoon to deal with it.

Of course he never turned up nor responded to my text until late in the evening when he suggested he could come the following afternoon.

First world problems, though – we're not starving, being attacked, or being screwed over by an incompetent corrupt government... (well, maybe the last one).

However, Maggie, Meg and I did have time in the morning to visit Kirkcudbright Galleries for a coffee and scone.

And then we went to look at an exhibition showing the amazing illustrations of Raymond Briggs (The Snowman, Father Christmas, Fungus the Bogeyman etc). It was stunning to see the original drawings with notes around the edges, as well as all sorts of quotes and comments about his life and approach to storytelling.

It was inspirational, and just made us want to pick up pencils and crayons and start sketching.

As always, Maggie's birthday cake for me was incredible

This one had a peanut-buttery-rocky-road base, with a cheesecake middle and a chocolate ganache with drizzled peanut butter topping.

She knows me so well!

A second slice was not advisable...

It never is, but then that kind of advice is never listened to.

I was stuffed to bursting point, but also enveloped in the warm love of my family.

I really couldn't ask for more.