See! I’m getting better at this ‘article writing’ stuff! I’ve learned that a sensational headline can grab people’s attention.

But you’ve all fallen asleep again so that didn’t work. Let’s move on. Ok – why am I a pain in the a**e? Let’s get to it…

In mid 2015, I started to experience non-specific pain and fatigue. The best way I can describe the pain is that it was like having the worst ever dose of ‘flu. Everything ached but if you asked me where it hurt, I could not point to a specific part of my body. I just ached. I mean, really ached. Everywhere.

I didn’t know whether the fatigue was a consequence of the achiness or something else, something separate. But for someone who had been pretty active throughout his life, it was incredibly frustrating having to turn down the opportunity to play sport or just go out for a walk. But, I figured I was in my mid-50s so it was probably just part of the ‘joy’ of getting on a bit. “Get on with it and stop being a drama queen” I scolded myself.

But, by late 2015 it wasn’t getting any better. So I took myself off to my GP who ordered blood tests. Given the nature of this site, I’m guessing that you can probably work out what happened next. So, I then went through the usual dizzying round of tests, scans and various other things that a newly identified leukaemia patient goes through. At the same time, I was also summoned for a routine bowel screening examination and wasn’t that just a baleful of fun and frivolity! They could actually just call that “an exercise in combining acute discomfort with maximum loss of dignity”. However, that’s not the pain in the a**e that I’m writing about, so I’ll move on.

Co-incidentally, I had been having investigations into a lump under my jaw that resulted in a sample being taken (that hurts more than you think it will, doesn’t it?) which led pretty quickly to the removal of the tumour, which had obligingly decided to be benign. In fact it was identified as a Werthyn’s tumour, which is named for the chap who first discovered one but as a result, I’ve never been able to eat a caramel flavoured candy sweets advertised by a kindly looking old gentleman since.

So, as you can imagine, most of 2016 was taken up by getting my head round the fact that I was now a leukaemia patient, getting cameras shoved up places a camera really ought not to go, having parts of my otherwise disappointingly still-unattractive face removed and generally using up a significant proportion of the NHS’ annual funding.

But as 2016 became 2017, I found that despite raising it regularly with my haematology team, nothing was being done about the pain and fatigue. My haematology consultant said that it could not be connected to my leukaemia (oh don’t worry – we’ll be coming back to that later) because I was a stage 1 patient and stage 1 patients didn’t get pain as a result of their CLL. In discussing the fatigue, he suggested to my GP that I be referred to a sleep clinic.

What?????????? A sleep clinic?? There is a world of difference between not sleeping well and feeling fatigue. I’m not bloody sleepy – I am physically bloody tired. I describe the fatigue as the sensation one might have the day of running a marathon or playing in a two-day rugby sevens or five-a-side football competition, both of which I did in my youth. Sleeping is not my bloody problem. AAAaaaaarrrrrrrrggggghhhhhhhh!

And…breeaaaathe…..

Part of my problem is that I come from a medical family. My father and brother were/ are both GPs, my sister was an expert in a particular dental discipline and there are plenty of other medical professionals dotted around the family. You inevitably hear so many stories about how a small proportion of people constantly misuse the NHS and you know me – I don’t want to make a fuss, I don’t want to waste peoples’ times and taxpayers’ resources. You know what? I’ll just put up with it. It’ll go away eventually.

Except it didn’t.

As 2017 became 2018, the incidence of ‘pain episodes’ increased to 4-5 times per week instead of 2-3. What’s more, the intensity of the pain grew to the point where too often all I could do was crawl up in a ball and hug myself. As 2018 became 2019, it got to the point where I was frequently in tears, not simply because of the intensity of the pain, but because of the consistency of it. It just never stopped. Its ‘volume’ might go up or down, but it never actually left me alone. It is so depressing to feel pain as the first thing that you think about in the morning and the last thing you think about at night. In fact, it’s generally worse than that, because often it will keep you awake all night so there won’t even be the respite of a few hours peace in the warm and welcoming arms of Morpheus (no – not the geezer from The Matrix – the other Morpheus, the Greek one).

Every single medical appointment I had, I brought up the pain and fatigue symptoms. But I got nowhere. My attempts at putting on the ‘brave public face’ became increasingly strained and it became obvious to anyone that I was struggling. Badly.

Eventually, my wonderful and much-loved Sister managed to help me speak to a wonderful, dedicated and hugely kind friend of hers who was a pain management professional. A what now? A pain management professional? Did such people exist? Was there such a medical discipline as pain management? Oh yeah baby! There sure is! His kind advice and guidance helped me frame to my various medical teams precisely what I was feeling and helped me give them suggestions of a way forward. Give that man a knighthood!!!!!!!

After much nagging, in 2020, my GP surgery referred me to a pain management clinic at the Lister Hospital. But, this is Covid life, and they were snowed under managing new and existing patients so it was March 2021 before an appointment became available.

And then I had a chat with their Pain management Team.

Wow! I was in a new world. Someone was actually listening to me and telling me that I wasn’t just imagining it. It wasn’t just in my head. Furthermore, they were telling me that plenty of Stage 1 CLL patients experience precisely my kind of symptoms (and didn’t I just enjoy telling my haematology consultant about that!). They used terms like possible chronic pain syndrome or fibromyalgia. I always thought those were codewords for neurotics or hypochondriacs. Oh – hang on – just quick tip for you here – if you’re chatting to a Professor of Rheumatology who runs a pain management clinic, it’s probably best if you don’t repeat that suggestion about thinking you might just be a hypochondriac – they tend to get a little miffed with you! <Sheepish embarrassed grin>.

Anyway – we agreed a five point plan, which was executed remarkably swiftly (spinal MRI, rheumatology visit and inspection, referral to psychology team*, blood tests and once all of those are done, consideration of what pain relief meds we might look at). I’ve asterisked the psychology referral because I believe the brain – and training your brain – can help immensely with the management of pain and I was exceptionally enthusiastic to learn and understand that as much as possible to avoid a simply pharmaceutical approach. I’ll talk about ‘pain and brain’ in my piece next Tuesday, so if you’re bored or have nothing to do, maybe we could make a date for next Tuesday….same place and time work for you?

I can’t tell you that the pain/ fatigue issue is solved. It’s not that easy. We’re still in our early days of finding the right combination of protocols. But the sense of relief that I’m not simply being a hypochondriac or worse – that I’m simply imagining it all – it beyond my ability to find the words to describe it.

Every day is a challenge and every day the pain is with me to some degree. But now I know that I am not alone and that there are other people who feel the same. There are kind and wonderful people working hard to help me manage it. Now I know it is real and not imagined.

So sometimes, being a pain in the arse is necessary. I’m in a better place and I only got here because I was a pain in a lot of peoples’ arses. I nagged, and nagged and nagged. I felt embarrassed doing so. I felt I was wasting peoples’ time and valuable resources. I was ashamed to be making a fuss. I was never rude, impatient, intemperate or angry. I was always calm, reasoned and logical. And thanks to the love, advice and guidance of those around me (and their friends!), I finally got to where I am now.

Where am I? I am in a place that is no longer all dark. The pale yellow glow that promises a dawn of less pain and better managed pain is slowly creeping over my horizon. This place offers the prospect of happier days. This place offers a chance of having more energy to do the things I want to do. This place offers the chance of fewer tears of bitterness, anger and frustration. This place offers a future where pain is not the dominant thing in my life.

And the name of this beautiful land? I believe it is called “Hope”.

Stay strong. Fight hard. Smile lots.