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Myrian's story

16th September 2016

Myrian, 42, from London, felt ‘not quite right’ for a while before suddenly being struck with the most intense headache. She’d contracted viral meningitis and following what was, at times, a dark and frightening experience

Myrian's story

She is now focusing on moving forward and putting her life back together, despite the legacy the disease has left in its wake. She recounts her experience here.

“Last September I was living a busy, active and full life. I was working full-time for a leading charity as a senior communications manager, performing stand up improvisation gigs, going for runs and yoga, as well as being a meditation therapist and lined up for further advanced training in meditation and neuroplasticity (the irony!) and looking to put an offer on a house.

“Then suddenly, after months of not feeling quite right, I came down with the most horrific head pain on my tube journey home from work. By the time I arrived home it was impossible to move without large amounts of effort – the ongoing sharp pain spread from my head down my neck into my spine and extended throughout my body right to my toes.

“The only way I can describe it is that it felt as though my whole body had been hit by a truck several times over and my head was being pummelled constantly by bricks on either side. I wondered if I might have been having a strange allergic reaction to the steroid drops I was taking for an eye inflammation that had been diagnosed a few days before, or whether a serious eye inflammation had been misdiagnosed and, thinking the worst, that perhaps I had a brain or eye tumour!

“The next day I was just as bad. I couldn't move from my bed so I called the GP, who said I may have the flu. I knew what I had was not the flu, though I agreed to wait a few days. I spent the next few days in a strange trance, in pain the whole time though in a very calm state. Somehow I managed to get myself up and to take slow, painful walks in my local park. I had an intense need to be in nature.

Crawled into my GP’s office

“Three days later I crawled into my GP’s office and saw a trainee doctor, who said she would double check my symptoms with the hospital. The next morning I got a call from her saying I should go into my local A&E immediately. She thought I may have something else (meningitis was not mentioned) but it was her mis-diagnosis that got me into hospital.

“That evening I was given a spinal tap and woken at 4am with the results that I had meningitis. Because I had so many symptoms and had been diagnosed with other inflammatory problems a couple of weeks earlier they were worried there may be an underlying cause to all these symptoms.

“I was taken from the oncology ward after two days into the infectious disease ward with my own room and given an antiviral drip; none too wise as to what the real diagnosis was or what it meant. It took five days to have an MRI and CT scan and two more days before I was told I had VZV (Varicella Zoster Virus) meningoencephalitis. None of this meant anything to me and the reality of what it meant wasn’t explained to me.

“A week after I'd been admitted I was released from hospital with a week's worth of antivirals and told by the doctor that I'd be fine and back to my old self within a couple of weeks.

“A week later I had another 'attack' and was re-admitted for 24 hours. I was discharged with the doctor saying I would be okay in time. Two days later I found myself in painful spasms for 36 hours unable to move from my bed. I didn’t have the strength to call for an ambulance or to handle another hospital stay.

The most frightening months

“There then followed the most frightening and also enlightening months of my life. According to the consultant who had seen me in hospital (not a neurologist or specialist in meningoencephalitis) I was meant to be okay a few weeks after hospital release, though this wasn’t the case for me. With all the symptoms I was experiencing in the months that followed, I truly thought I was doing something wrong. It wasn’t until I spoke to Meningitis Now and another charity that they explained I had an acquired brain injury (ABI) from the damage of the inflammation to my brain and spinal channels. Yet this still meant nothing to me. And so began months of trying to put it all together.

“Although initially I had a surge of adrenalin which kicked in intermittently and seemed to keep me going - I even managed to go on three long, fast walks (that I’d like to call jogging, but really I was walking fast). I was experiencing massive loss of short-term memory, numbness and pain of the right side of my body, no pain or sensations on my skin (which meant I burnt myself easily), inability to regulate my body temperature, no ability to concentrate or follow instructions, I struggled to recognise words and read, I would write gobbledegook in many of my emails and texts, thinking I had written a sentence that made sense but had not. I didn’t know what year it was and had to work it out by process of elimination.

“As time went on, my short-term memory and other faculties were further diminished. I lost the memory of many things I had learnt over the last decade, I couldn't remember the conversation thread and with every other sentence I had to ask for clarification of what was being discussed. I couldn't remember much of my vocabulary - I literally had the English vocabulary of a child and as someone with a career as a senior communication specialist this was quite daunting. I had lost the ability to add and subtract (which made the few trips to a supermarket quite fretful).

“I would multi-task and stop mid task, start something else and forget the existing tasks. It sounds funny and I do laugh at times, but it’s pretty serious when you think I would forget to ignite the gas on my cooker (and because of losing my ability to smell and taste, I had no idea the gas was on), or begin ironing and leave the iron on the clothes burning and start another task.

“I still struggle to make my way around familiar routes and I can get lost and confused easily. I sometimes take the wrong bus even though I have the route planner right in front of me (my brain sometimes can’t act upon what it sees and what it knows). I struggle to tolerate noise and artificial lights as well as too much stimulation. I walk out onto the roads without my brain acknowledging oncoming traffic or that I should stop and wait. Walking into doors or tripping over the edges of things is another speciality of mine (my brain has lost some spatial awareness), I struggle with coordination and most recently I have issues with losing sight in my right eye and hearing depending on fatigue levels. You can’t begin to understand how over stimulating city life is even if you try to isolate yourself and keep things simple.

“Other symptoms were not as serious but included things such as not knowing if I had brushed my teeth each day. I had to check my toothbrush for wetness every day for eight months! Oh, and leave post-it notes around the house – though every time I read one I couldn’t remember if I had done what it was reminding me of!

“It can take me ages to get anything started or completed, all day every day. So, it may take me half an hour to work out my breakfast and then to remember to eat it. Then I can get overwhelmed by what to wear and what goes together. Then I cannot ‘see’ where I left my keys. Yep, if we make a date, it may take me some time to get there.

“The list goes on ... and with each month or new task challenges pop up. It’s hard to mitigate, making planning to do anything or set goals very limiting. It’s exhausting, which doesn’t help with the extensive daily fatigue that is also part of the illness. I have to rest a lot between tasks or opt out of doing things which I am still getting used to accepting. I miss being the first one getting up for a dance and the last one standing, being able to plan a holiday alone knowing I’d be able to cope safely with the travel, sightseeing or being outside of my safe environment, or even a weekend of camping. Little things, but they all add up.

Intrusive and dark thoughts

“I also experienced some very intrusive and dark thoughts which frightened me and sat very uncomfortably with my otherwise kind and generous nature. These were explained as part of the damage that encephalitis has on the brain, not to mention the fall out any serious illness has on the person’s wellbeing and life.

“I couldn't work even though I tried to go back after a few months for one day a week, using a cab to get there and taking regular rest breaks. I was unable to hold any executive thought process, made constant mistakes in my work and couldn't follow conversations of any kind. For a short time I learnt to fool people (and myself) getting by with doing very little, but I was a mess and other symptoms increased the harder I pushed myself.

“I was unable to do anything that helped me feel better; even something simple such as meditation, which as a meditation practitioner was unsettling. I was unable to do things that made me feel useful and a part of something, from performing stand up improv to an audience, socialise or return to work - it was isolating.

“And suddenly I had no income. I began to accept that it was safer, easier and all I could manage to stay at home. The sudden fatigue that hit me all day every day a few months after coming out of hospital started to cripple me and there were days where all I could manage was to literally crawl to the loo and back to bed.

“Those on the outside don’t appreciate the effort it takes to show up on any given day. People’s judgments can be harsh and because I look fine on the outside, people assume I am exaggerating or lying or things aren’t really that bad. I am grateful to a handful of strangers and acquaintances who have come into my life since I fell ill and become friends. They have cared enough to be with me without having any expectations, mindful of my abilities, and let me be who I am.

“Strangely, my mood over recent months has been very even, sometimes even quite flat. I miss being able to experience extreme excitement and joy but equally I’m quite glad I don’t get anxious or depressed in the ways I used to.

“If it wasn’t for the support of Meningitis Now, who provided me not only with someone to talk to at the end of the phone but also helped finance talking therapy for me, I don’t know what I would have done.

Things that helped

“Things that have helped me include covering my whole house in post-its as reminders to do things. I’ve followed a strict herbal medicine routine for seven months and a diet eliminating inflammatory foods. I continue to try various natural remedies and therapies to help with my symptoms and repair the damage that has been done. Financing them is a huge problem for me and I hope that in the future results in cases like mine may make them available on the NHS. I found meditating, even when I couldn’t get my brain to focus or remember what I was meant to be doing, helpful. Sitting with a book in front of me staring at words that had no meaning to me, but knowing that one day my brain would remember to recognise and comprehend text, was also beneficial. Epsom salt baths were a saviour to my aching body. Perseverance and my pure stubbornness has gotten me through. I also think I find the whole process fascinating and on stronger days, see it as great first-hand research into ABI and how I can help others with it or raise awareness for it. I wish there were more support groups on offer and that the medical profession had more awareness of the illness and the fall out of it to offer better care and support.

“I am still waiting to get help on managing my fatigue and symptoms and to learn to have structure and routine in my day so I can start putting my goals into action in a safe, healthy way for me.

Determination to survive

“I had become very depressed for a long period of time and I still have times when I struggle to stay positive – I don't know how I will live with the symptoms or be able to care for myself, let alone financially support myself in the future. I had spent Christmas and my birthday alone. There was no room to work towards the idea of one day living in a house with a garden (I was on course to buy my own place outside of London before I became sick, but without the income of a job at a senior level I know it may be out of my reach). Travelling, resuming my meditation practitioner practice or being in a relationship again – how do you even begin to meet someone when you are living a very limited social life? All seemed out of reach.

“If it wasn't for Meningitis Now and another charity and my pure resilience and determination to survive, embrace my experience and demand better care for myself via my GP, I would never have understood my condition or had any light at the end of what is a very deep, dark tunnel.

“After months of non-specific 'care' (I am still receiving symptomatic care as opposed to useful rehab to help me get back on my feet) I was lucky that a charity referred me to a neurologist who had experience in VZV ME. His concern and knowledge of the symptoms were a huge comfort to me – I finally found someone who had seen it all before. It wasn’t all in my mind and I was doing nothing wrong.

“His referrals and repeated and constant interest in my everyday wellbeing have helped me to feel cared for, playing a huge role in me having hope and slowly accessing the care that is available on the NHS. He listened to and comforted me, would check up on me several times a week when things were acute and still keeps in touch to see how I am doing. He was willing to hear all about the research that I had come across before I became sick as part of my interest in neuroscience and acquired brain injury therapies used in other countries. We both were sad to realise the system in the UK doesn’t offer these treatments.

“The UK NHS system is far from perfect. Understanding of the illness and providing holistic and joined-up care is not available. Nor is care consistent, but every little bit helps – you just have to know where to look, think outside the box, do a lot of the work yourself and keep asking questions. If it wasn’t for the support of the charities I would not have had any information on the illness or be under the care of a wonderful NHS consultant who is doing the best he can with limited resources.

Isolated from my old life

“I have just had my appointment at the Neuro Hospital in London (yes, so many months later) and will start occupational therapy soon which I hope will be focused on my abilities given the illness I’ve had as opposed to generalised OT. I still have some way to go and know that I have to keep taking care of myself and be patient. I still struggle daily with so many things – I forget I have ABI and give myself a very hard time.

“I am still isolated from my old life. I get hurt by people’s lack of understanding and exclusion to social events, as well as losing friends, and so tend to push myself too much when in the company of others. I am extremely fatigued, not just from the illness and its symptoms, but also from the battle to survive each day for 12 months and the external life challenges that one also faces, not to mention all the weekly hospital visits and new symptoms for the past 12 months. It’s a lot to handle.

“As I start to get stronger I begin thinking of ways to lead a fulfilled life within my capabilities and how I can support myself. Yes, I am scared, I am worried, I am sad and sometimes get angry about having an ABI. I worry about how I will cope long-term. I sometimes want the old Myrian back, or rather no, I just want some elements of the old Myrian back – the person who wasn’t tired all the time, able to cognitively set goals and follow them through with confidence, to be able to dance again and travel. I wonder how I can make all this meaningful for the life I have been given and for others too. I hope to get to a point where I can offer support to others with ABI, whether it be through a support group, running specially-designed meditations and ecotherapy groups or perhaps even becoming fit enough to take part in some of the physical challenges and raise some cash for the charities that supported me.

“I am now, almost a year since this all happened, feeling strong enough to consider taking my recovery up a step. I want, and need, something to work towards. I am mindful of my personal limitations and so know I need to work slowly but surely in order to achieve this. I hope to achieve going back to yoga, finish off my yoga nidra training, start taking art classes (rebuild those neuropathways) and I also want to set up awareness for unseen disabilities and offer ecotherapy and nidra classes to those with ABI. Yep, set myself quite big goals. Some habits are hard to beat! So, here it starts.

“The phone support in my darkest hours from Meningitis Now, the information they were able to provide about my condition, sending someone to see me and paying for therapies to support me during my recovery have all helped me turn a corner, and I am so grateful for everything they have done.”

Myrian viral meningitis case study