The back story

In early 2007 I had the job that many people would dream of, I was the Trouble-shooter for the Group Risk Team of Capita plc, it was an absolute scream. I got paid rather a lot of dosh [link to linkedin profile], had a nice spot in a great office on the west end of London, plus a fabulous team of folks to work with, and the best boss in the world.

Life was good, I had a lovely house in the Norfolk Broads - I could see Barton Broad from my bedroom window, I would get up at a civilised hour, paddle around the Broad in my canoe, then get on with a good day’s work in my cabin in the garden.

I had met the most wonderful lass (hereafter referred to as ‘Sweetie’) in the previous September I mean, what more could you ask for? 

Not that I would know it, but the black dog of depression was sneaking up on me and about to hit me over the head in a fairly unsubtle fashion. I left my awesome job at Capita as I thought I needed a sabbatical; I couldn’t have been more wrong.

Then sweetie and I became aware that we were going to be parents, this was a bit of a surprise as I had previously been assured that I couldn’t have kids, so the impending arrival of a small person was a little unexpected. The arrival would have gone down better were it not for the fact that sweeties’ modest flat was quite literally a building site at the time.

I was in no fit state to finish the works, thankfully some amazing friends of Steffi’s all mucked in to sort it, they were to me wonderful exponents of their Christian faith. Btw I don’t do God, but believe that what others do is no concern of mine. 

Then over a two-year period I tried and failed at a number of jobs, following which I landed a good job with Network Rail as a Risk & Value Manager, to cut a short story long I got more and more tired, then I had to give up work for bit. Then I got better, then I had a full-on breakdown.

When I joined Network Rail, I rather sensibly choose to pay extra for private health cover, I saw the most excellent Dr. Jeremy Broadhead on a number of occasions for mental health related matters, a key outcome of which was that he was pretty sure that I was autistic.

I knew that I was very different to most people as I had oft wondered why I could quickly learn and instantly remember pretty much anything. I have always had a weird visual memory and occasionally the social and interpersonal skills of a particularly blunt chainsaw, but without the subtlety.  

Latterly I found out that the programme I started on was known as the ‘poisoned chalice’. If you would like to know why HS2 will probably be (at least) 300% over budget, feel free to drop me a line.

Around this time Sweetie developed a persistent cough, several months later, after getting it checked out, we found out that she had lost circa 25% of her lung capacity. The diagnosis of a chronic degenerative lung disease (Pulmonary Sarcoidosis) was a hammer-blow, I don’t think I could remember which way was up at the time.

Sweeties’ condition got steadily worse, then the Guildford Hospital she worked at withdrew part of the salary to all staff that was meant to compensate for living in London, so we had no choice but to move. 

Sweetie then landed her dream job as Head of Radiotherapy Treatment Planning in the Royal Devon & Exeter Hospital. So, I had to give up work, then I lost my house. Over the next few years I slowly got my mental health back together. With the help of some amazing friends my confidence started to return, albeit very slowly.

Over this period I have spoken to quite a few people who genuinely seem to think that mental illness isn’t real and they oft remarked ‘why don’t you pull yourself together and get a job?’ To this day I find it genuinely remarkable how many people believe that as they have not experienced a given situation, it does not exist.

I went through the process of being assessed for Employment Support Allowance, which is a benefit that you have to be seriously in the doodoo to get, I did. Over a three-year period, I received it, it made an enormous contribution to me getting back on my feet.

I remember oh so clearly reading the shocking news that Robin Williams had taken his life, he was one of my heroes on so many levels. A few months after that I didn’t think I could sink any lower. 

I was very wrong, the only reason I am still here is that my wonderful folks and sweetie saw what was looming over the horizon and got me through it. Many men in the UK aren’t that lucky.

After going through that, Sweeties’ health steadily deteriorated, to the extent that it was not unusual for me to be looking after her 24/7, for many months at a time, trying to do my domestic goddess routine and getting a lovely little boy to school.

In hindsight, the breakdowns had fundamentally changed key tenets of my personality, the loss of confidence coloured so many aspects of my day-to-day life. I found it incredibly difficult to simply get organised and prioritise tasks, this has thankfully improved dramatically, but is markedly different to the pre-breakdown Jay. 

Since September 2018 (sweetie took ill health early retirement from the NHS in November 2018) we have had the most amazing support from Devon County Council, we now have carers looking after sweetie for sixty hours per week, which has helped enormously.

Looking back, I clearly experienced chronic stress and sleep deprivation for most of the previous four years or so. It wasn’t much fun, looking after someone with a chronic disease is chuffing hard work at the best of times.

So we had the allied of challenges of Sweeties’ condition and ongoing difficulties between us in our day-to-day relationship. When your partner has a chronic disease you become a carer first, a lover and husband end up a very distant third….

So where does this former tale of woe leave me? – Happy, positive about the future (every day) and more determined than ever to make this dream of mine come to life, in the process