If you’ve found this page while trying to Google me, well done! Whoever you are – I’ve missed you!
The reappearance of this website follows a rather turbulent few years. I have put this page here purely for expediency; it saves me having to explain everything that’s happened, every time someone asks me how I am. I’ll try to keep the explanations brief.
So – where to begin?
I haven’t been in a great state to post much here, or indeed elsewhere, for a long time. I have missed birthdays. I haven’t kept in touch with everyone as much as I would have liked. And if you know me well, you know that’s not like me.
In 2024 I had to have eyesight-saving surgery courtesy of Moorfields Eye Hospital, which was followed up by radiotherapy at Bart’s in London. I stress that this was nothing to do with cancer, rather the pioneering technique of using radiotherapy at lower doses to limit further damage to my eyes. The teams at both hospitals have been amazing, and that’s more than I can say for most of my experiences with the NHS this last few years. God save the NHS, because without it I would not be sitting here typing this here now.
The cause of all of this bother was a condition called Thyroid Eye Disease. It isn ‘t common.
In early 2023, following some dramatic weight loss and other symptoms in the preceding years caused by thyroid problems, I had to have my whole thyroid gland surgically removed. It had been overactive for some time and had gone critical.
Most problems with an overactive thyroid are countered using drugs such as carbimazole, but they hadn’t been working. The removal operation had been booked, cancelled, re-booked again and cancelled time and time again. During this time my meds were altered repeatedly with, it has to be said, very little involvement from the hospital, which may have worsened things.
The hospital were quick to sign me off following my thyroid removal. If I was “normal” like everybody else – and that’s never been my way, let’s face it – regular levothyroxine tablets would have seen me enjoy good health within a few months. These of course had to be carefully balanced, and like the other tablets, they weren’t working for me. My GP altered the doses in response to my complaints of continuing to feel ill, but with hardly any support or guidance from the hospital (who saw no need to bring me back in) and with no improvement, I eventually had to beg my GP to find another thyroid specialist. When he found one, and thank goodness he did, they told me that – possibly due to that mismanagement of my meds – my thyroid hormone levels were now dangerously overactive, putting my eyesight directly at risk.
I started getting more symptoms – mood swings, intolerance to cold and/or heat extremes, swings in appetite, aches and pains, weight loss, weight gain and, eventually, some very nasty double vision. I had to stop work. And then in the middle of everything, my Dad died and I was spending all my time clearing the family home.
By March 2024, with my eyes now red, watery and bulging, I was put on steroid treatment. Then, in June, I had orbital decompression surgery at Moorfields followed by radiotherapy, which was frankly exhausting.
I have included some pictures in the section on the right. You absolutely don’t have to look. I’ve included them simply to give you an idea of how thyroid eye disease affected my appearance.
Now you understand why I have taken to using an avatar instead of my regular photo!
The eyes have been recovering, but the process is slow. The whole matter of the delays in getting treatment, and the problems I have had with the medication are being investigated as we speak. The meds are being monitored closer than ever, my bloods tested regularly. Further operations on the eyes will be necessary, and there are a number of other complications; I have been left with weakened vision, tired eyes, brain fog and all sorts of medical problems which come and go without warning. I cannot enjoy alcohol any more, as it interferes with my meds. I am under four different hospitals, with all kinds of tests pending in order to find out why things didn’t go back to normal for me.
Stress can contribute to thyroid problems. It’s been a tough few years. I had been, frankly, working too hard and not listening to my body’s cries for help. I have a business to try and keep going. And prior to getting ill, I had spent a couple of years trying to live with some problem neighbours – an understatement – and I have documented all that in a book I have written called “The House That Crack Built, or Problem Neighbours and How To Live With Them.” I will get around to publishing it one day.
There are deep scars that have to be healed, not all of which can be seen on the surface. I have low energy. My sleep has become irregular. I have had to slow down an awful lot.
Everything now happens at a dramatically reduced pace. Work has to be very part-time indeed, all within the amounts permitted by the benefits system, to which I am adhering closely. I still can’t work at anything like the maximum permitted hours, but I also cannot afford to retire and don’t want to.
I have to put my recovery first. That recovery will be slow. But I have moved house, and am living safely and happily in my new home, which helps greatly.
So – if I have missed your birthday, stopped calling, not spoken to you for years or otherwise fallen off the radar, do not be alarmed. I still love you and I will not be beaten by this.
“This world will not impose its will
I will not give up and I will not give in”
Postcards From a Young Man (Wire/Bradfield/Moore)