Lucy’s Story, Age 23

A lot has changed since I last posted – I’ve come back to university to finish my third year after two years out having suffered a brain disease called anti NDMA receptor encephalitis. I have a much better understanding of what happened to me now, through months of searching for answers.

I was placed in a mental hospital [incorrectly] for three months as doctors assumed I was suffering a mental breakdown and thus filled me with psychotic drugs but gave no treatment to the physical illness (my body’s immune system mistakenly attacked healthy brain cells, leading to inflammation of the brain] that I was experiencing, as it was left undiagnosed.

The disease stops all autoimmune processes and symptoms include impaired memory and cognition, abnormal movements, seizures, and/or problems with balance, speech, or vision. Psychiatric symptoms may include psychosis, aggression, inappropriate sexual behaviours, panic attacks, compulsive behaviours, euphoria or fear. To summarise, I went backwards about 18 years mentally and became clinically insane.

My disease was left so long that my body began to shut down and I began to die, the hospital gave me three rounds of electric shock treatment which induced tonic clonic seizures and eventually brought me back, although now catatonic.

Whilst coming round from my post seizure state, I was left alone in a hospital room on a bed, as I started to come round I fell out of the hospital bed and onto an open radiator pipe. Because I was catatonic I could not feel my own body and was completely unaware of this, so I stayed burning until eventually a member of staff found me. The pipe burnt entirely through my sciatic nerve and left a third degree burn scar over ten centimetres long. This resulted in me becoming paralysed in my left leg… months and years have passed, and I cannot count how many hospitals/doctors/specialists I have visited all of which have stated there is no cure for this.

I am now permanently disabled and in constant agony. The pain is unbearable, and I have tried more pain killers than I even knew existed including morphine, duloxetine, gabapentin etc.

I now wear an orthotic splint and use crutches to get around, but this is still very challenging, tiring and painful. Being back at university has highlighted to me how many short cuts I cannot take because of steps etc.

As well as this, when I was discharged from hospital I could not walk or talk at all let alone type, read, write etc. This means I have had to self-teach myself absolutely everything from scratch, but I am finding life incredibly hard.

Living with acquired brain injury, or to put it more simply a broken brain has affected every part of my life. To name a few examples I relate to the Encephalitis Society website:

• INFORMATION PROCESSING

“Information processing refers to the ability to think things through, pay attention and concentrate. Attention refers to the ability to focus on one task, to take in information, or to divide attention between tasks. Concentration generally refers to the ability to sustain attention across a period. Individuals affected by encephalitis may have difficulty processing information quickly, which may result in a slowness to answer questions or the need for increased time to complete tasks. It may be difficult to concentrate, with increased distractibility and poor mental stamina across the day. Following encephalitis, it may also be difficult to take in and process information leading to an overload of information and a sense of being overwhelmed by conversation or noise.

• MEMORY

Confronted with someone who has memory problems following encephalitis, it is very important to remember that not every aspect of memory is affected. Memory can be affected in different ways. It may be difficult to:

• remember recent events, such as what happened last week, where a belonging was left within the house or conversations
• follow directions and finding locations
• learn a new skill, such as lessons at school or how to use a new mobile phone
• remember events and people from their life before the encephalitis
• remember what must be done at a future time, such as appointments or paying a bill next week
• remember people’s names
• remembering what they have read and following the storyline of a movie

• LANGUAGE

Many people experience language difficulties following encephalitis such as understanding speech or with expressing themselves. Some people have difficulty finding the right word. It may be evident that the person has problems with speech, in that it lacks fluency or else is fluent but doesn’t seem to make sense. Other people may also find difficult to take in and understand conversations so that an individual experience an overload of information. Others may find it difficult to stick to the topic or ‘monopolise’ conversation.

• EXECUTIVE FUNCTION

The term ‘executive function’ refers to the high level cognitive skills required to identify and successfully complete goals. This includes abilities such as planning, problem solving, organisation, flexibility in changing a strategy that is not being effective and holding back inappropriate responses. Difficulty in one or all these areas occurs to varying degrees following encephalitis with a significant impact on everyday life and relationships. People may struggle to get to an appointment on time, fail to complete tasks once started or have trouble juggling multiple tasks at work. They appear to be ‘less organised’ than they used to be.

• INSIGHT

Following encephalitis, an individual may have reduced awareness of their difficulties as a direct result of the brain systems affected. It may be hard for them to recognise changes in their thinking or behaviour and how such changes may affect their return to everyday life, including driving and working. An individual may also understandably find it difficult to accept the impact of the encephalitis and deny that they have any problems. Both reduced insight and denial of problems pose challenges for family members.

• PROSOPAGNOSIA

Prosopagnosia (or ‘face blindness’) is characterized by severe difficulties in face recognition.  People with the condition cannot recognize the faces of their closest friends and family, and often their own face. The pure form of the condition means people do not have any other difficulties and they can access all their stored knowledge about a person once they know their name. They can also still recognize objects. However, the pure form of prosopagnosia is very rare. Most people who acquire face recognition difficulties experience other cognitive and visual difficulties alongside the condition. This occurs because brain injury tends to affect several brain regions, and face recognition difficulties therefore mostly present as one of several symptoms of brain damage rather than as an isolated condition.

• CONFABULATION

Confabulation is difficult to describe. At its simplest, confabulation is a problem with a person’s memory. Some people think of it as having ‘false memories’. Someone who is confabulating believes in this memory as if it is real, they genuinely do not realise that what they are remembering did not happen.

This can be difficult to understand. A good way of thinking about it is that all of us from time to time make mistakes in what we remember. Usually we realise our mistake, we have a feeling that it is not quite right. However, when someone had a brain injury, the person stops realising they are making a mistake. 

• Emotional lability

Following encephalitis, some people may experience uncharacteristic extremes of emotion, which are difficult to control. For example, they may find that they become very tearful more easily without warning or in response to something sad, such as a movie. Others find that they laugh or smile inappropriately, such as when being told a sad story or bad news.

• Frustration, anger and aggression

Frustration and anger are common following encephalitis. Anger may reflect the direct effect of encephalitis on the brain systems that control emotional responses. For example, following encephalitis a person may have a shorter fuse or/and say/do things without thinking due to changes in frontal brain systems. It can be more difficult to control emotional reactions with an increase in anger outbursts

• Anxiety

Anxiety and worry may occur after encephalitis. This may reflect the direct effects of encephalitis on the emotional regulatory centres of the brain, such that the sense of threat is amplified or there is difficulty taking on feedback to dampen down an increased sense of anxiety. Anxiety can also be a response to the changes to an individual’s world after encephalitis as a person tried to make sense of cognitive, emotional and behavioural changes and the limitations to everyday life imposed by these changes. Previous coping strategies to manage stress or worry may no longer be available. Some people experience worry and anxiety related to their memory and attention problems as they find it difficult to keep track of plans, what they have done or where they have put things.

• Depression

Depression is common response to the life changes that occur following encephalitis. Low mood and symptoms of depression may reflect the difficulty of achieving personal goals or a changed ability to take part in their usual activities, including work or social groups. A person may mourn the end of a relationship, the inability to pursue a former active social life or chosen career, or changes to family roles and capabilities. Feeling sad is distinct from the pervasive low mood associated with depression.

• Impulsivity and disinhibition

Impulsive and disinhibited behaviour can manifest in several ways. The person may appear to lack ‘tact’ after encephalitis.

• FATIGUE

Fatigue is a common symptom after encephalitis with many patients describing fatigue as being one of most disabling symptoms of their after-effects (acquired brain injury). Fatigue is closely linked to sleep disturbance and other consequences such as cognitive, emotional and behavioural difficulties. Fatigue may be a direct result of injury to the brain or be caused by the increased ‘neurological effort’ required to compensate for lost skills and abilities.

Fatigue after an acquired brain injury (ABI) is different to fatigue due to other causes in that  

• it has a sudden onset post brain injury
• it is intense
• it has more than one component, including cognitive, physical and emotional aspects
• it can only be ameliorated by mental rest and/or sleep
• Even activities which are relaxing such as reading a book or watching television can be tiring for a person that experiences neurological fatigue following ABI. Fatigue can have a huge negative impact on overall quality of life and tends to exacerbate other problems. It can result in anxiety, depression, guilt and anger, making return to work/education and participating in social activities sometimes impossible.

• HEADACHES AND PAIN

Headaches are common following an ABI which may result from encephalitis. We don’t know for sure why it happens. Headache, for example, may happen because of stress and tension, when the person tries to do too much, or may be a sign of anxiety. Cognitive and behavioural functioning of an individual are influenced by pain. Pain is also associated with depression. It is important to notice pain characteristics such as start, duration, location, triggers, as well as any psychological factors and relief indications.

• SEIZURES/EPILEPSY

Seizures are common during the initial stages of encephalitis, when people are typically quite unwell in hospital. In some instances, they can be quite difficult to bring under control and may need a period in the intensive care unit.

Seizures may also occur at a later stage, well after the acute illness is over. This is because the after effects of the inflammation of the brain in encephalitis may leave the brain cells more likely to produce the bursts of abnormal synchronized activity which cause seizures. When seizures occur in the absence of a precipitating factor (such as the acute infection), they are known as ‘unprovoked seizures.’ Epilepsy is defined as a tendency to experience recurrent unprovoked seizures.

Many patients who go on to develop epilepsy after encephalitis will have had seizures during their acute illness and then continue to have unprovoked seizures after they have recovered. They have evolved from acute symptomatic seizures to epilepsy without any period of freedom from seizures in between. However, others may not have had seizures at all during the acute illness or may have had some seizures which settled, but then go on to have unprovoked seizures (epilepsy) at a later stage after the encephalitis. Although this most commonly occurs within the first year or two after the encephalitis, seizures may begin much later in some people. ”

I had been so determined and desperate to come back to university and get my degree as I already completed two years of it with strong results but now I’m back I’m finding everything impossible. I can’t concentrate in lectures and find myself nodding off because of the extreme fatigue I’ve been left with as a result of my brain injury. when I get home, I am exhausted and just want to sleep, I’m beyond anxious everywhere I go. i find so many things triggering and have broken down in tears in six of my lectures so far this term.

I stare at the screen on my laptop, but I can’t make my brain function to write anything, I feel like I’m drowning in assignments that I just cannot start.

I don’t want to talk to anyone about it because there’s no way anyone could ever understand, I literally have a broken brain and somehow, I’m expecting myself to get a degree?? but I HAVE to get this degree because it’s all I’ve wanted since I came out of hospital but I’m just finding it so hard…

I have no friends on the course because they’re all already friends so the only time I’m socialising is when my friends from home who have been with me through everything come and visit… this is such a parallel to anything I’ve ever experienced in my life before encephalitis.

I don’t want to join societies or anything because I don’t have the energy to be doing anything more than what I’m doing now and I don’t want to go into university and talk to anyone such as tutors or wellbeing about my problems because having to walk to university as much as I already do is awful because of my chronic pain and also if I speak about anything I can’t stop crying and it’s just a mess.

I’m worried that I have an exam for one of my modules and I’m just going to be sat with a blank page for two hours because I can’t withhold any information

I don’t want to say anything to my mum or dad or sister as they’re already so worried about me coming back to university and it’s not fair on them as they’ve already been dealing with almost losing me. Also, I feel their immediate response may be to get counselling but that’s just not what I want or need.

I can’t take any more time out of my life because I have lost too much already, I must finish this degree but I’m just struggling, and I just really need to see some sort of way that I can get through this…

From:
Dawson, Lucy (2018, November 12) “An Honest Update..’” [Blog post]. Retrieved from https://lucyintheskywithencephalitis.wordpress.com/2018/11/12/an-honest-update/