Steve’s Story – Part One

My name is Steve and I work as a trainer within a social services setting.

I am a runner (ultra/full/half-marathons), I surf, outdoor swim, mountain bike, play tennis, badminton and occasionally even table tennis. I love to move! That is a truth. Basically any sport outdoors I will give a go. I tell all this to set the scene that I am not overweight, not lazy and have a virtually vegetarian diet.

Towards the end of 2018, I started to feel “different”. I found myself getting headaches, odd sleep patterns, disturbing dreams and more. My friends and colleagues tell me that I was behaving ‘oddly’ at work too. I’m afraid, had I not found a journal that I was keeping, I wouldn’t have had any signs that I can recall of the onset of a brain disease that I, like most people, had never heard of which is Autoimmune Encephalitis.

In the middle of October last year, I was taken to Guildford Hospital by a colleague as she, like many of my friends, was highly concerned that my behaviour had rapidly become very bizarre indeed. I was turning up at offices to “train” staff on a computer system, yet there was no such training booked or scheduled. It seems that I had started to obsess about work and if you knew me that would make very little sense. I like my work but it certainly doesn’t define me in any way, shape or form.

What I love to do is: travel, listen to and play music, I loved to read, I play guitar and drums, I sing, I write songs etc. I say that I ‘used’ to love those activities as some of those things I cannot abide now.

I can’t tell you anything more about the end of 2018 as I have absolutely no recollection of my two months in Guildford hospital, no worker names, or which ward I was on. All of that now resides is the “Dead Zone” as I call it.

I have since visited, and loads of the nursing and ward staff recognised me. There were some lovely hugs which was pretty weird as they clearly liked me and were delighted to see me walking, talking and pretty much lucid.

Whilst I was there, I underwent a huge battery of tests, all of which came out clear, negative, or inconclusive. This is apparently quite typical of encephalitis (type LGI1). I lost 11 kilos in weight, which I sure can’t stand to lose! Oh, and as time went on I slept a LOT, which is the natural way for our bodies to fight infections.

My close friend Lisa (guardian angel) tells me my friends and colleagues visited in their droves. I had no concept of this – a fact that still moves me to tears. Lisa recently showed me my Deprivation of Liberties (DOLS) paperwork as in the first few weeks in Guildford Hospital I kept running away so, they had to find a lawful way of keeping me in the hospital due to my ‘diminished capacity’. She goes on to tell me that I deteriorated pretty quickly and that she came in one day to find the curtains drawn around my bed and nurses/doctors looking pretty concerned that I was not waking up.

I had been sleeping most of the time over a fair period of weeks and at that point my friends were all pretty convinced that I was never going to regain my “sanity” as when they visited I either talked nonsense, or about work, or slept, or said very little. I don’t recall anything.

I was truly lucky, however, and responded well to the course of treatment. I “came to” and after just a few days I was able to recall my name and now, with a ‘hopefully’ firm diagnosis, it was the job of the hospital to determine how seriously I had been affected. There can be any amount of impairment to faculties, depending on age, fitness, and duration of inflammation, severity and the time taken to diagnose and treat.

I was transferred to a stroke/rehab unit in Woking for two months once I was considered to be ‘stable’. I don’t recall the transfer at all but towards the middle/end of December, I “came to”. What a weird term that is.

I would love to say that I enjoyed my time in Woking Hospital, but I felt it to be very inappropriate for me as a previously very fit human. That I had lost my ability to run any kind of distance and was skin and bone was hideous to me.

Luckily, I was once again able to read books, which was always a passion for me. Now though I cannot read. I just have no interest at all. A possible side effect/trait for some sufferers as I mentioned earlier. You will change!

After about two months in Woking, I was taken (very quickly) to Tooting Hospital in London and received a number of treatments aimed at targeting my specific type of encephalitis. I was patient as all hell (just short of a month there). I gave up reading during that time and took to just sitting on my bed staring out at the grey London skyline. My friends continued to visit me and that kept me going. I felt quite “numb” to be honest, and in some ways that allowed me to tolerate being told when treatments were cancelled and that we would start afresh “next week” which meant another interminable weekend wiling my time away on a hospital ward.

My friends tell me that I was unnaturally patient but really, I wasn’t feeling that much emotionally. That was to come later. I do need to say this though and this comes from the bottom of my heart, the nursing staff in every one of those hospitals were incredible! We do NOT pay enough respect to the health system in the UK. Not even close!

At home, I was discharged home on March 12th 2019. I came back to an empty house and a loneliness that I have never previously experienced – at least not to the degree that I do now. I sometimes go to bed exhausted at 8pm, only to be pinned wide-awake for hours and that isn’t easy to cope with either.

It is over a year since the successful diagnosis and partially successful treatment of my LGI1 Autoimmune Encephalitis. Not a week goes by when I don’t feel completely lost to some degree or another. I am single/unmarried. I have no children and have no surviving parents or siblings.

Without a close network of friends, I fear that I would “drown” in the worries about my symptoms – which are clearly exacerbated by stress. I am still on a phased return to work and every time I have tried to do more than a half day, three or four times a week I pay dearly for it with increased symptoms and tiredness.

I have to be honest, having ‘absences’ (my term for the minor seizures that are actually a form of epilepsy) never gets any easier and to this day am terrified when they are more than just pauses in my speech. I am always in mind of a line from a film I love, “when the spells come, I feel like a part of me is dying inside”.

To me, the absences feel just like that. Yet, I am a very lucky person as, in the last year, I have managed half of the Pilgrim’s Way Marathon. I ran the whole of Beachy Head Marathon (8th time). I have swum in rivers and the sea (in two countries) and I have surfed (very badly) in France this summer. I am also back playing tennis but, dear Lord, nowhere near as much as I would like to! If anyone wants to come and play with me just call!

The downside (and I am not sure that is accurate) is that I cannot tolerate crowded trains, buses, packed planes, big groups of people, small talk, a LOT of the music that I used to love, live gigs and loud noises. All of these things increase my anxiety levels hugely. If you live with, or are caring for someone with autoimmune encephalitis, check out any website for an exhaustive list of potential side effects/traits you will see some of these: insomnia, depression, mood swings, disinhibition etc. That is one accurate list I can tell you.

The absolute hardest things for me though are the seizure/absences. I just “go away” for a few seconds. I can still function, but falter if I am walking, talking or performing some day-to-day task. I could not for the life of me tell you what goes on in my brain. My heart sometimes speeds up, and my voice is shaky when I speak for a few seconds. I get quite anxious and, to this day it’s hard not to wonder if one time I am not going to just drop dead. I know that sounds absurd or melodramatic but when you are alone with a disease that you cannot make sense of it doesn’t feel that way.

I used to, in the early days, feel like I was on the verge of some blinding epiphany and would try to explain that I was on the verge of some huge revelation. In time, I realised that I was just looking for an explanation or understanding but actually I have to accept that it is just random white-noise. This condition is apparently quite rare for someone of my age and so little understood that I find little to comfort or console me when I get down in spirits.

I am very fortunate to have a huge amount of friends and colleagues that think very highly of me. For that I am so, so grateful! Encephalitis International are also amazing and I wouldn’t hesitate to recommend them on the days when you just need to talk to someone with knowledge, patience and an understanding that will reduce me (you) to tears. Yes…every time I call!

Finally, if anyone tells you that they find that they are a lot more emotional/tearful than they ever were before the illness, believe them! I cry almost every day of my life now. Luckily that is something I accept. I enjoy sad films, cannot tolerate violence, comedy, especially joke-telling, TV, newspapers, small talk…the list is endless.

My take on year one is this: I am far from “recovered” I am looking at treatment option number six now. You WILL not be who you used to be…but I have to ask is that a bad thing? When my friends say “you are more like the old Steve now” I almost wince and feel like saying, “what a shame I want to be different”. Maybe not this different though.

Read Part Two – Steve’s Story from Lisa’s perspective