Two feet forward, how many back? Or should that be Jay Walking?

As I haven't quite worked out how to copy across some clipart I'll just have to explain my chain of Js. I really wanted the point where the horizontal bar meets the upright of the J to be the left most point of the next J going up so that if you toppled off the right part of the horizontal bar you'd fall into the loop of the next J and not down to the bottom.  Hope this makes sense as if it doesn't there's no point in reading on!

   J

  J

 J

J

Recovering can be a risky time – just like jay walking across a busy road.

As I get better I try to do more, as I try to stretch myself I often fall back a bit.  As I am spreading my resources further things that had previously been easier can be harder.  But only temporarily, falling down forward into the bottom of the new ‘J’ and not back down into the bottom of the previous one.  And then I climb a steep learning curve. 

I reach a plateau period when I’ve found I can do the new ‘thing’ with some confidence. 

And after a rest period I begin all over again.

I found out that maximum recovery does not equal full recovery.  I have discovered that pushing onwards and upwards and onwards and upwards can result in falling down with a thump and bruising confidence severely.  Recognising and accepting this has been liberating. I'm in a position I didn't think I would be even 5 years ago. By not trying to start another J I can scamper along the top of my J and back again in real safety.  Okay when I say scamper that I implies an energy and speed that I don't actually possess.  Perhaps saunter would be more accurate.

Stage 5 - 7 Explore - Consolidate

        5           EXPLORE

Moving forward means working out what can be done.  This can range from day-to-day needs through to the irregular, from domestic to work to leisure.  Trial and error comes to the fore.

I can do quite a lot of things on an individual basis.  Discovering that I need to consider the cumulative effect of these individual actions was rather painful and led to the many and sometimes long bout of tears as I collapsed again and again exhausted.  EXPLORING what can be done safely, perhaps from having to do things close together due to external factors, has led to a less traumatic life although it really is boring being sensible.  So spacing out activities is crucial to maximising life.

       6           LEARN

I remember some things some of the time, occasionally I remember everything and some days I completely give up on remembering anything.  Basing my life on the maximum point of my executive functions and mental energy was a disaster.  Expecting that one day I would be like this all day, everyday ended up being mentally, physically and emotionally crippling.  Identifying realistic targets and ambitions and allowing myself to enjoy exceeding them would have been much more helpful, healthy and sustainable.

So I base my routine on I can’t remember.  I have charts for the day, for the week and a calendar.  I tick off as I go along.  I can go days or occasionally weeks with scarcely using it except for the odd glance.  But on those days when I really, really need these charts, it’s not a big thing they are there waiting to be used and I don’t have to waste precious mental energy on remembering the basics.

Often I have stumbled across ways of coping although I prefer to think of them as my Eureka moments.  Supermarkets have bewildered me they are noisy, bright, full of people and require decisions.  It’s all very well saying make a list of what you need but you have to remember to take it and once at the supermarket remember you’ve got it.  One day I found myself gripping the trolley so tightly it acted as a focus for me almost a security blanket against the hustle and bustle.  So now when ever I go I make a point of gripping the trolley and using it as a stability point.  It works.  I know it does as sometimes I forget to.  I find deciding what to wear incredibly difficult.  Getting dressed regularly took hours.  One day and I don’t know why I rearranged my clothes by colour, so jumpers and t-shirts are muddled together now rather than separate.  Since then I have severe difficulties a few times a month rather than a few times a week.

I had to reconcile the fact I hate being touched with belonging to a tactile, loving extended family.  Over time I realised that if I went to hug a relation I coped better than if someone came and caught me unawares.  I eventually managed to tell the family and so we all LEARNT that I initiate hugs.

You could say I’m just playing with words or gestures but I’d rather say I’m LEARNING what are the most effective ways for me to manage my life.

       7          CONSOLIDATE

I have met people who are fascinated by their illness, love talking about it and frankly enjoy it.  Yet they never seem to put into place the changes they recognise they need.  You could say accuse me of navel gazing but I say I analyse to improve.  What I might discover whilst doing one task might be equally applicable to another.   Understanding what I find difficult in a given situation has allowed me to understand the impact of acquired brain injury.

CONSOLIDATING is not the end of the process.  As I’ve learnt new things and taken on different challenges I’ve found it hard to allocate mental energy or handle the extra demands I want to take on.  However because I have CONSOLIDATED what I have learnt I know that by referring back to my 7 Steps I usually find a way to incorporate these into my life or indeed as a result of my ACCEPTANCE, UNDERSTANDING, COMPREHENSION, GRIEVING, LEARNING AND CONSOLIDATION that I have to stop doing this task to maintain what has already been achieved.  I may not enjoy having to stop actually I hate it but I know I have not lost control because I am choosing to recognise what I can’t do. 

Grieve - Stage 4

           4   GRIEVE

Mourning is a healing process.  You are allowed to miss the person who has died and also to wonder what your own life will be like without them and what it would be like if they were still here.  There will be triggers, photos, birthdays, anniversaries, a football team winning the FA Cup, which will bring your loss back to the front of your mind.  This might be a momentary flicker or leave you surrounded by tissues.  Society allows this, even recognises as healthy.

I underwent significant changes in personality, ability and expectation for life.  For a long time I expected I would return to Me Version 1 but this hasn’t happened.  I do get frequent glimpses of this person but for the most part they are completely lost to me. 

I still feel this loss even now.  I really don’t know who I am.  However since it occurred to me to treat the disappearance of Me Version 1 as a bereavement I have found it much easier.  I can GRIEVE for those parts of me without reproaching myself for self-pity yet can move forward as I’m not hanging around waiting for them to return. 

Stages 1 - 3 Acceptance to Comprehend

1              ACCEPTANCE

Having encephalitis wasn’t much fun.  There was no real reason as to why the fairly common virus decided to visit my brain. I didn’t do anything to provoke it. I wasn’t a bad teenager. It wasn’t fair that I succumbed to the illness.  It wasn’t fair that no-one could tell my poor parents what was going on for months and that initially they were given incorrect information and advice.

The recovery wasn’t a bundle of laughs either for any of us.  So little help and support meant we were making it up as we went along.

Feeling in the dark and uncertain as to what I could expect from myself, indulging in a pity of self pity and wanting to solve issues NOW has recurred periodically.  Over time I have realised that in attempting to identify and deal with the issues that I have had, both old and new ones, is too much in one go. 

From this experience I have decided that the first stage is ACCEPTANCE that I have had encephalitis, that I have acquired brain injury and that this interferes with my life. It’s hard to view this as a standalone position.  It’s hard not to ask why me but that isn’t constructive. You’re asking yourself a question that has no answer.

So I attempt to keep myself focused on simply ACCEPTING the situation exists and not seeking to address everything in one go. 

2              UNDERSTAND

Seeking the answers to the inevitable questions of why has this happened is difficult.  There are so many questions it is confusing, particularly as it can be hard to work out which should be the first question to answer and where does one question end and the next one begin.  What are the short term changes, what are the long term consequences; education, careers, relationship and finances at the very least.

As much as you want to know straight away, it’s just not going to happen.  Realising that is the case is an immense help.  UNDERSTANDING that there are many facets of your life that will be affected to varying degrees, that it will take time to return to functioning more fully and that trial and error will be involved is the next step.

3              COMPREHEND

Working out what any changes are, realising these changes may alter from the short to the longer term of their own accord, spotting the little things you’ve done without realising (for example I found myself using a finger to trace the words on a page like a small child which was a big step forward as it meant I had found a way into being able to read with less stress and suddenly realised one day that I was doing this less and less) and being aware of energy levels, both mental and physical, and that they will need to be managed on an on-going basis.  

Seven Stages of Managing

I can’t say I had no help in coping.  I saw a quite well known, although rather eccentric, cognitive behavioural therapist who was helpful.  Mind you, you do lose faith in someone when they say they don’t think this will work in your case!  Looking back I think I must have taken this as a challenge as I certainly have incorporated my take on CBT into my life.

From what I learnt through successes, failures, bloody-mindedness, despair and enjoyment of things I probably would not have experienced had I not been ill, I began to recognise patterns recurring. 

I also realised that splitting down tasks into component parts and that each part should be seen as an individual action.  For example people say they are going to write a list of things they need to do that day as if this is a single task.  It isn’t.  To write a list requires

1                    finding a pen

2                    finding some paper

3                    remembering why you have the pen and paper

4                    establishing what is to go on the list

5                    grouping tasks together eg in the house, outside, shopping etc

6                    prioritising what has to be done first

7                    compiling the list

8                    remembering where the list is or simply that it exists.

There are days when I zoom through to number 8 in my head but others when I can only do bit by bit.  Thank goodness for post-it notes.  I use these to write single items on and then rearrange them on a door until it makes sense.  Recognising that I don’t have to dash off my to do list in five minutes but rather that I can go so far and then have a break has been so enabling. 

Since working this out the number of tantrums and tears has diminished greatly albeit the frustration remains.

From this navel gazing over many years I have identified seven stages.  By adhering to them I have been so enabled to increase what I can do comfortably on a daily basis.  Although to be frank there are times when either forget or deliberately ignore them.  You can’t be sensible all the time.  These stages are:

1                    Accept

2                    Understand

3                    Comprehend

4                    Grieve

5                    Explore

6                    Learn

7                    Consolidate

I shall flesh out what I mean by these stages over the next couple of postings.

A Bit of Background

Things often come in sevens; seven days of the week, seven deadly sins, seven Heavenly virtues.

And to these I add my own group of seven.

To understand how I came to these let me give a brief explanation.

I had viral encephalitis when I was fourteen.  I didn’t have to be hospitalised as by the time it was diagnosed I was through the key stage.  The quiet atmosphere of my home was felt to be enough.  I did though need seven months off school before returning part time.

My parents were given one bit of advice.  It was lucky I had survived at all but it would take me a bit of time to get going again.  That was it.

I was aware as soon as I started school again that things were not right.  This former prolific reader struggle to read a paragraph, this decisive girl no longer felt she knew what she was doing and her considerable concentration had disappeared.  Despite having the most supportive of classmates she never felt integrated but very detached.  Knowing how worried my parents had been and continued to be about me and that my father was seriously ill I didn’t tell them.  Partly I don’t think I could articulate it but also I didn’t want to believe these problems existed.  I think we’ve all been in the position of if I don’t talk about it, it will go away.

About six months after I returned to school my father died.  A few months later my father’s mother died.  The following month I sat my O-Levels.  I just had to cope.  Somehow I got through it, but without the results I would have got had I not been ill, aided by a sense of logic I retained.

This proved to be a delay.  By the autumn I was diagnosed with severe clinical depression something rather uncommon in the mid 1980s.  This is something that has lived with me ever since. Now a lot of the problems I had relating to impaired executive functions can be a by-product of depression eg concentration difficulties.  The view that was taken was that the more the depression could be controlled the more likely I was to recover my former abilities.

I thought this view was the carrot of the carrot and stick, the harder I worked, the more I persevered, the closer I would come to the real me.  It turned out I was wrong.  I continued to be erratic.  Sometimes I could work incredibly intently and with great detail.  I would then get up to leave the office for some purpose and by the time I was at the door have no idea whatsoever why I was standing here.  It was as if someone was switching a light switch on and off at random and often with great frequency.  I simply couldn’t understand why this happened, I just hoped it would decrease over time and then life would be so much easier with a whole brain rather than a faulty one.  Therefore it was worthwhile pushing myself to the point of exhaustion. This viewpoint provided ample opportunity for self reproach, guilt and failure.  I was always chasing something I couldn’t achieve.  That isn’t to say that I don’t recognise what I have achieved but simply the effort I put in to attain them was too great. 

Somehow I just had to find ways of coping.

Eighteen years after succumbing to viral encephalitis I saw a neuropsychiatrist.  He asked me questions about my abilities that no-one had ever asked me before and the tears started to flow as for the first time I felt someone understood.  He sent me to a neuropsychologist for a series of tests.  It was absolutely exhausting.  Without being able to use the coping strategies I have developed over the years to work round problems and conceal problems it became clear that I had acquired brain injury.  It was the first time I had heard this term.  The weight came off my shoulders as it was explained me that the reason I couldn’t understand time, concentrate, remember properly, prioritise etc was due to this injury and not because I was a lazy, bad person.  I was inundated with flashbacks to situations where I had behaved in a manner I couldn’t understand.  Light dawned.  I still get such flashbacks most days.

However this was offset by the realisation that the person I felt I would have been had I not been ill, who I regularly had glimpses of and who I had fought hard to be would never exist.  I felt I didn’t know who I really was.

It was a couple of years or so after this that I found the Encephalitis Society website.  I sat scrolling through it with tears pouring down my face.  There were people who understood and wouldn’t judge.  The Society also gave me a chance to help through taking part in several research projects.  The thought that I may be able to help others suffering or recovering from Encephalitis is very important.

As I have said in my previous post all opinions are mine and not attributable to any organisation nor person.

To My Amazement

I have actually managed to create a blog, even tweaked the design and made an attempt at reading through the how to sections.  


And why have I done so?  Well I am only couple of years away from my 30th anniversary of succumbing to Viral Encephalitis.  I had no help in working out what the extent of the illness was nor how to deal with it.  Trial and error over these years together with a strong sense of logic has enabled me to identify ways and means of dealing with what life throws up.  I wish I could say I had quick fixes but I don't.  


It's been suggested to me many times by doctors as well as friends that I try and write a book.  I find the thought of this quite daunting but thought I would try a blog instead.


Whatever I write will be purely my views based on my own experiences and what had and hasn't worked for me.  It may contradict with the experiences of those who read it and may strongly disagree with my views.  If this is so then I simply remind them that I can only write what I know is true to me.  Hopefully though it may help others.  I know that I wish there had been someone to explain to me issues that took me years to work out for myself.


I anticipate posting quite a bit over the next few days - don't expect that work rate to continue hereafter.