Hey there!
My name is Joshua, and I am a survivor of herpes simplex encephalitis (HSE). It is currently almost eight months since I was diagnosed, but it has taken me until now to honestly reflect upon what happened during that time.
Growing up, I was always driven by my family to excel in my work. My father owns his own property firm, my mother owns an interior design boutique, and my uncle runs his own property development company in Central London. I have always had the determination to build my own life and live it to the fullest. I have always been sociable; I love to hang out with my friends and hear about people’s latest endeavours.
I found love in creating new things, whether it was building acoustic guitars from a book, writing my own music, drafting feature-length screenplays for motion pictures, metalwork, woodwork, construction… anything that involved creation drew me towards it!! But this all changed.
Fast forward to the end of 2017; my girlfriend and I enjoyed New Year’s Eve in Leeds. We came back to London on 1st January 2018 with work starting the next day. Prior to all of this, I had sat down with my father (my employer) and compiled notes on how to improve the company, in response to which we saw a 47% uplift in revenue in the quietest quarter of 2017; naturally he was willing to let me venture down new avenues with the team at the start of 2018. I was BUZZING, to say the least!
Joshua is a big boxing fan
On that first day back at work, I was not feeling well; I felt like I was coming down with a cold. My father told me to hold off on any new launches until I was feeling 100%, so I took this day as easy as I could.
Back home that evening, I was working on my girlfriend’s birthday present. It was all handcrafted so involved a lot of work. I remember this night like it was yesterday! I was sat in my room working away; I had had a glass of orange juice. I went to the kitchen to get a refill and spoke to my flatmate. As I took a sip of that second glass, a wave of numbness went shooting through my body from head to toe. I felt like I was about to be sick! Naturally, I thought it was the drink, so I poured the bottle down the drain. I remember pacing through my apartment hallway backwards and forward feeling like I was about to throw up, but never did. I stood in the bathroom with the weirdest numb feeling around my head, but just assumed it would pass. I had half a bowl of tomato soup and called it a night.
This is where it starts to get weird… I remember going to sleep relatively early that night. I remember lying in bed thinking this would pass, but every half hour to an hour I kept waking up dreaming of Dragon Ball Z (a cartoon I had not watched in about 20 years!) and feeling as though I was about to be sick. I have almost no memory of the next 4-5 days.
Apparently, I spoke with my father in the morning and told him I was not feeling well. He told me to rest up and book a doctor’s appointment, which I did. I then called him after lunchtime saying that something was wrong, that something was not right! Because my father was close by, my mother told him to take me to the closest clinic. He picked me up and took me to Queen Mary’s Hospital in Roehampton. I remember sitting in the A&E waiting room, and somehow he managed to get a nurse over to me immediately; I remember looking up at her from the chair. They told my father that they only deal with minor injuries and that I needed to go to a general hospital.
I have no recollection of this, but my father immediately drove me to Kingston Hospital (the staff of which deserve praise beyond recognition). I was taken into the intensive care unit upon arrival. I remember waking up from time to time; I remember seeing my family stood with my girlfriend at the end of my bed. I remember waking up during the night to see my mother’s head laying on the bed asleep next to me. I remember being rolled over so a sample could be taken from my lower spine (thankfully I don’t remember the pain of the injection; apparently it is excruciating!). I remember telling the nurses I had done drugs at the New Year’s party which couldn’t be further from the truth; a drug test was taken to prove this. I only recently found out that at one point I was walking around unattended and delirious, and collapsed in the hospital hallways. I remember waking up and being violently sick multiple times; and then I remember coming to… I SHOT out of bed with my family next to me, saying that I need something to eat, something to drink and some fresh air immediately!!
After a couple of days, I was feeling okay. I felt like I was ready to leave the hospital and get back to work. I was briefed by the GP about what had happened to me, but I don’t think I truly registered it at the time. I was asked to attend a cognitive reassessment course a day or two later which would tell me where I was at recovery-wise. The test was simple; a child could have completed it – but not me. I was shown pictures of items such as books or telescopes and asked to name them. I could literally feel the information circulating in my head, but I could not pin down the names of the items, or the answers to the fundamental maths questions, or the colour of the boxes. I felt totally useless.
My doctor came to my room to tell me I needed to attend Ascot Rehabilitation Clinic to get myself back on track. I was frustrated because I am a naturally impatient person. I had still not fully accepted or understood what had happened to me.
After my family convinced me to attend the clinic, I only stayed for 10 days (to me this felt like a lifetime). I was given numerous tests such as problem solving and physical building exercises; most of which I did well in. It was the memory-related tasks I failed at miserably (to be fair though, my memory was never the greatest!).
After leaving the clinic, I was sent home; by this stage, it has been nearly a month since I was admitted to hospital. Around about this time I contracted a chest infection as well and was put on antibiotics, which knocked me out completely when I was taking them due to my immune system being so weak!
Valentine’s Day was coming up, and as a Christmas present to my girlfriend I had booked for the two of us to go on a beautiful trip to Paris (number two on her list of places she wanted to see most in the world). People were sceptical about me going, including my girlfriend, but I felt fine. We arrived, had a couple of drinks (big mistake) and got an early night. The next day was the worst day of my recovery at that point. We started to make our way into town, but I was utterly drained of ALL energy. I was literally falling asleep whilst walking and could not eat a single morsel of food. We quickly returned to the hotel where we booked an immediate trip back to the UK. I felt awful for my girlfriend as we had not even been there for 24 hours, but I was growing weaker by the minute.
The next morning, she left my place and headed home; this was the last I saw of her – I felt like a hole had been ripped open in my chest. For the next two weeks, I suffered numerous severe panic attacks, unlike anything I had ever had in the past. Ambulances were called to the first two, and on the third, I was taken into hospital as I was convulsing uncontrollably. After I told the nurses what had happened, they suggested I seek therapeutic help. If you’ve never done it, then do it! It’s a godsend.
I was initially put on anti-depressants which I was then immediately taken off after speaking with my GP. The therapist forgot to mention that taking these pills will put you in a state of deep depression for the first 3-4 weeks and then you will start to feel neutral. But even after just half a pill a day for the first three days I felt horrific; I decided it would be better to battle this without the aid of medication.
Things by this stage were not easy, and my GP recommended I see a different therapist to discuss my options. Only after seeing her for my first session did I genuinely appreciate what had happened as she laid it out for me – I was recovering from an illness that tried to kill me, I was unable to perform my work which I was desperate to do, and my relationship had come to an end, all within the space of a few weeks. I felt my world was crumbling around me. The sessions I had with her were unbelievably supportive and helped me to get myself back on track, but it was a long road.
I started to get feelings of detachment; this was the worst part of my recovery so far. My body was in one place, and my mind was in another. Out of nowhere, I would start to look around the room, and I would feel like NOTHING was real! I felt that I was trapped in a paradox and all of what I was seeing was in my imagination. I would break down into hysteria and uncontrollable tears, hyperventilate and uncontrollably exacerbate the situation. Even having gone through it, I still cannot remember what it truly felt like at the time as my mind has simply blocked it out. But I can remember this; there is not a soul on this planet I would wish that feeling on, and if you are reading this, I sincerely hope from the bottom of my heart that you never have to go through this either.
With the help and support of my family and the therapist I was able to get past this, but it took considerable effort. I was given exercises to perform when panic attacks or feelings of detachment occurred. After doing them once or twice, the emotions started to subside, but patience is CRITICAL!
It is my absolute belief that with every downfall, there must be an uplift. Life is all about balance.
Due to the ample amount of time I have had on my hands lately, I have had the opportunity to look into new adventures in life; things which I have been delaying and delaying. New avenues are opening to me, and it is only because I have the time to focus on this that it is coming to fruition.
In the past eight months, I have had multiple severe panic attacks, suffered from anxiety and depression, uncontrollable fatigue, feelings of physical and mental detachment, confusion, hysteria, 24/7 headaches, dull eyes so sore they feel like they have been rubbed with sandpaper, and chart-topping mood swings to add to the mix.
Taking all of the above into account, I am now back at work and re-crafting the structure to my life, and, with the help of my family, I feel as though I am on the right road. I started out working only an hour a day under the doctor’s recommendations. Slowly but surely, I was able to increase this to five hours a day, which is where I am currently. I find that if I stay in the office for this period of time, I am still able to get some work done at home later in the day. It is a careful balance of a change in scenery and rest. I still suffer from memory-related issues, but I am learning to cope with this and the issues are lessening as time goes by. It makes a world of difference to be in a family business where all of my colleagues have been incredibly helpful and supportive.
Despite what I have been through, I count myself as unbelievably lucky. When you go through a trial such as this, you realise that life is a gift and this is something which must be honoured. Like Encephalitis International, I want to help others with their journey as much as I possibly can. I want to give back what has been given to me; truth and understanding. I want to call for a movement that shines a BLINDING light of recognition on things that are kept from us. I want to prove that no matter how down you may feel, no matter how oppressive something may seem, there is ALWAYS a way through it… it is simply a case of knowing where to look.
