The cancer scare was a wake up call. I had been sleep walking into stress, working too hard and overdoing side projects. My body was trying to tell me something and I wasn’t listening. So it started shouting at me.
I needed to reassess things - take things easier. In my head I was still the 24 year PhD student toiling most hours and drinking and smoking my way through the rest. I needed to slow down: work shorter days, take more breaks, switch off.
An old friend mentioned spoon theory;- needing to think about now having a finite budget of reserves that need to be allocated accordingly and breaking tasks into smaller chunks.
I was reminded of that scene in the film Gattaca:
"You want to know how I did it? This is how I did it, Anton: I never saved anything for the swim back."
For a long period of time I had been running on empty and not leaving anything left in the tank. And it showed. I had been working long days and jumping into late nights with a short break for dinner (“family time”). My mind was filled with things I had to do. I couldn’t focus and would usually procrastinate, almost as an act of self-destruction knowing full well it would add to the strain. I was tired and had lost 10kg in weight. My body had had enough.
I returned to work after the Christmas break, resolved to slow down. Work shorter hours. Take better care of my health (physical and mental). As partner in a business this should be easy but it felt really hard - that somehow I was cheating our staff by working less hours than them or my business partner for adding extra load onto him. We hired some extra help to support my role in the business and I was starting to finish work at 3pm (often for a nap). I was helping out more at home. And slowly I was getting my energy back.
And then the pandemic hit.
I had been working from home anyway: the commute into Bath took too much out of me and seemed a poor use of the limited energy levels I had available. I found driving tiring and the train not much better. But work and home quickly became a blur where I was somehow 100% in both but neither was getting the focus or attention it needed. Peta was furloughed. The schools were closed. Like most people we started off with noble plans.
We were lucky. At Mud the work kept coming and we were fortunate to be in one of the few professions that seemed to have both resilience and demand baked in when it came to a lockdown and remote working. But the economic future was uncertain. We sadly had to furlough two recent hires including the role supporting me. We were going to get through this but the long hours crept back in and before long was working 40 hour plus weeks again. The 3pm shut off went out the window and I was once more at a computer most waking hours.
I was falling back into bad habits. Smoking to give me breaks in the day and drinking in the evening to signal a cut off from work. It was great having Peta and the kids home - especially with the lovely summer weather - and it was nice to see them enjoying the garden and sunshine. But I stayed inside most days.
After a few months my right eye started hurting. Lockdown had passed and I mentioned this to my consultant knowing that after the lungs, the eyes are the most regularly affected organs by sarcoidosis. An initial inspection with the ophthalmologist seemed fine but he advised seeing an optician to get my eyes tested. The glasses I had been wearing were a quick one hour turnaround I’d got a year earlier in Bath to fix a broken pair so I could drive home. Perhaps they were a bad prescription.
Something was up. The usually cheery optician was strangely quiet and seemed concerned. There was a lot of humming and thumbing through books. A scan of the back of my eye was showing black marks which apparently indicated some kind of inflammation. He had seen sarcoidosis in customers before but not like this. He wanted me to see a specialist.
I was back at the hospital in Bath and further tests confirmed what the optician had seen. The blood vessels in the back of my eye were inflamed and bleeding. I was starting to get photo-sensitivity and having trouble with blurred vision and spots.
I was prescribed some steroid drops and was to return in a week or so to review. Then the left-eye started playing up. Some days I was having difficulty seeing out of my left eye. Others my right. But the main outcome was tiredness again. Some days I couldn’t focus on anything (literally and mentally).
It was the sarcoidosis. The immune response that had a year earlier started attacking my lungs was now going for my eyes.
Several trips and tests followed (deja vu!). They injected dye into my arm on my birthday to view the flow of blood through the vessels in the back of the eye. Then last week someone finally explained to me what was going on.
At the back of both eyes I had vasculitis - spots similar to the granulomas identified on my lungs which had started forming around the blood vessels at the back of the eye. This was causing an inflammation of the blood vessels and leaking blood into the eye. Additionally I had anterior uveitis which meant that the iris was also leaking white blood cells into the eye. This was what was causing the vision problems and photosensitivity I was experiencing with light bouncing off the cells floating around in the vitreous eye fluid. Nice.
The vasculitis seems to be responding well to the steroid drops. I am phasing them down from 4 to 3 to 2 to 1 drops a day. Hopefully things will calm down.
Once again my body is shouting at me. After the initial elation of coming out of the lung scare last year I felt like I was relatively on top of things. But now I am starting to realise that my sarcoidosis is a condition that I will have with me for the rest of my life.
It is a condition that cannot be treated or cured but has to be managed. I can take steroid drops and anti-inflammatories but that will only ever manage the symptoms. It will not address the underlying cause.
And I know full well that if it hits me a third time it won’t be nearly as forgiving.