My symptoms before I was diagnosed with cardiac sarcoidosis

Day 840.

Looking back, there were a few signs that something was wrong before I was diagnosed and before my first big heart event.

Resting after work

I have a career as a digital marketing consultant. It is pretty much an office job. I use a lot of brain power, but not a lot of physical effort is required.

For a few months, I would get home from work and go have a lie down on my bed. My whole body would have this dull ache. Lying down was a relief for my muscles. And to be honest, if there wasn't a 2 year old that wanted supper, I could have gone straight to sleep for the night right then. At 6 PM.

I would make one last ditch attempt at normality by getting up and feeding my son. A lot of the time the husband would have cooked for us, as obviously I was lying down. After supper I would go straight to bed for the night.

At the time I thought I was just hugely unfit. I had gained some weight, and getting home on the train and walking was really taking it out of me - this is what I thought. The husband thought I was depressed.

Looking back this was obviously hugely abnormal.

Unable to run

In 2021 I changed jobs. This was 6 months before my first heart event.

My new job was for a company with offices right at the waterfront. Every afternoon there would be people going for a run or walk, right after work in the late afternoon sun. I used to run a 10 km daily for a few years, and I decided to give it a go for the first time since my son was born.

I ran stop and start for about 700 m (or 760 yards), and just couldn't go any further. I had nothing left in the tank and my legs felt like jelly. I then had to walk back. It very much felt like a walk of shame.

I just felt so unfit. I came down pretty hard on myself.

Unable to walk uphill

My house is in quite a hilly area. There is a particular footpath that cuts up a rather steep section, but saves you a ton of time when walking to my house from the train station.

I was finding myself struggling more and more to get up this footpath. My legs could just not do it. I would take two steps, and take a break. Then another two steps, and another break. I am sure tortoises were passing me.

I again just thought that I had gotten very unfit.

Waking up with a racing heart

Another symptom I was experiencing, was waking up around 3 AM most mornings with my heart thumping like crazy.

Many years ago I had heard that red wine can cause this. I didn't Google it, unusually. I just decided that I must be drinking too much red wine, and cut back substantially.

This was about 6 months before my heart event.

Gaining weight

I think as a result of me being so fatigued and not being able to tolerate any exercise, I gained about 15 kilograms over two years.

It was a vicious cycle.