Out with the Old and In with the New

For the past 6-9 months I’ve known things weren’t right yet been unable to pinpoint what’s wrong. This feeling has been bubbling along beneath the conscious level.

Gradually I realised what the problem was but was unable or unwilling to admit it.  The framework that I have used to run my life since I began to develop it some dozen years ago, that I have invested so much effort and energy in so that I could maximise my life safely was no longer sustaining me.  Such an overwhelming sense of loss and fear was too painful to acknowledge and hence left unaddressed.

Fortunately this realisation coincided with a periodic appointment with my consultant.  In the freedom of this time when I don’t have to cope and can actually say that I’m struggling I was able to let go and admit the extent to which I was floundering.

As with everything I need a way in to get my mind round things and this my consultant gave me.  Having to alter the pattern of one’s life is normal, the causes may be different but the need to alter is not.  This gave me the ‘permission’ I needed to scrap what has been my life saver and go back to the drawing board.  However I was returning with knowledge gained from the experience of the last portion of my life.

Breaking things down into smaller and smaller areas is essential to be able to identify the smaller targets that can be achieved more easily.  With these targets in place the whole framework will, I hope, be rebuilt securely to support me as I move on.

And this is how I’ve started.  Those things that haven’t been working can be split into two, the external and the internal, in order to spot the weaknesses.

The external – well that’s the stuff that doesn’t start with me but even so does have a direct impact on me.  Of those extra demands some are temporary, others are permanent but will I be able to tell which is which?

Since I can’t control these, I can’t create a totally protective framework.  At last I’ve learnt this.  What I can do is assess how much of my mental stamina and strength is needed for those permanent demands.  Next is to guess what spare capacity I need to enable me to cope with temporary needs. In the past I didn’t consider this.  I set up routines that required too much of me so when the irregular or unexpected occurred I wasn’t able to cope thus pushing me down.  Am I going to get this assessment right first time?  Well no, as always trial and error come into play.  However through knowing and acknowledging this I still retain control even when I make a right mess of things.

That there are going to have to be changes to my routine is unavoidable.  I simply cannot continue with all the things I have worked so very hard to incorporate into my life, things that I still want to do.  But there is no alternative and being in an unwanted position is an experience that would have occurred even if I’d never been ill so for once I can apply the word ‘normal’ to myself.  How strange!

The internal is stuff that emanates from me.  Over the last 30 years I’ve learned a huge amount about how my brain works and it’s an erratic little machine that in the flick of a switch varies from the extremely high powered to one that in the time it takes to stand up has forgotten what it stood up to do.  Through analysing and experimenting I’ve enabled myself to do more than is/was expected.  I’ve found ways to manage the limitations I have and the tendencies to overdo things when I’m most able so that I don’t pursue them to such an extent that I collapse.

Yet for all this I’ve found myself coping less and less well.  Proven abilities have been letting me down.  I’ve tried again and again, making myself more and more unhappy.  How much of this deterioration is due to me and how much is it the consequence of having to handle these extra demands?  Once I wouldn’t have known what to say but today I’m pretty confident that it is the latter.  I don’t consider that I am the fault but rather that I have failed to identify and address the problems caused be external factors leading to a very damaging cumulative effect.  I’d been trying to maintain my old routines whilst incorporating more things into it.  As always happens when I get to a certain point of exhausting my mental capacity I go to pieces and then have to deal with that too.

So I’m now faced with three drawing boards or rather three heaps of post-its and scraps of paper.  To the left are the daily and weekly lists that I’ve used pretty successfully in the past but lately have been a bit of a blur.  Do I need to do everything listed on them?  Have I omitted things?  What needs to be added?  Shall I start with the basic basics and then add tasks onto them so I gradually build up to the all singing all dancing version?

In the middle I’ve listed the existing, regular commitments I’m able to retain alongside the newer things I need to build into my life.  Where is there flexibility?  Am I spacing things out enough? Am I allowing for the irregular stuff?

Reminders of the things I know so well but regularly forget or don’t want to heed, notable the phrases “Oh it’ll be okay this time” and “I’ve just got time” are on the right.  It doesn’t matter how much time I put into managing the other two boards if I sabotage them by mismanaging this group.

I reckon it’ll take a couple of months to get this really sorted out but if it helps for a few years that’s nothing. Oh yes have I answered any of the drawing board questions yet? Not exactly.  Well not really. Okay not at all.  But am I chuffed at having worked out what the questions are.  Most definitely.

Light at the End of the Tunnel?

Hmm I have my doubts at the helpfulness and accuracy of this little cliche as it focuses on the end with no regard for the present.

As  I recovered from encephalitis I edged nearer to this light.  With no guidance available to me I assumed I would recover all the abilities that I had so taken for granted before this illness.  Given this ignorance I felt it was worth fixating on this light that tantalisingly dangled out of my reach.  Pushing just myself just that little bit more and a bit more and a bit more seeing every target  as something to be reached no matter what the light moved from being an encouraging carrot to a cudgel that had to be toiled under in fear of failing to reach that next stage.  The stress and self-criticism this caused fed a guilt downward spiral that needed no such help.

Chasing this end meant that I didn't keep an eye on my current surroundings.  I didn't spot the pebbles and stones that I twisted my ankle on, the rocks that sent me sprawling grazing my legs nor the bloody great holes that I'd fall into and then struggle to climb out of, sometimes with broken limbs.  In other words I was creating so many problems for myself by not knowing I was over reaching, setting unrealistic targets and placing myself in a position that may have had positives but also considerable negatives.

Of course I made great strides and ticked milestones off my list that were believed to be beyond me.  I won't deny this and I'm proud of it too but I cannot emphasise enough how many regrets I have from obsessing with achieving what I believed I would have done had I not been ill.  For me this was the light at the end of the tunnel.  At this point it would be remiss of me not to acknowledge that, given my character, even if I had been told I would have to revise my expectation I would have refused to do so and bloody mindedly ploughed on.  I do believe though I would have begun to accept my limitations many years before I did.

With the benefit of hindsight I wished I had adopted the attitude to life that I  have now.  I'm never going to reach the light at the end of my tunnel.  I've stopped trying.  This is not a negative outlook.  Far from it.  Along my tunnel are flaming torches lighting my way.  Yes there may be the odd dark patch when a torch has gone out but by and large I can see where I am going.  I can see those pitfalls and adjust my stride, stepping over stones, creeping carefully round holes and making the most of it where there is a free path.

So, for me, henceforth I have a lit tunnel that allows me to see my present and near future rather than a tunnel with a lit, unobtainable end.  Realising this has not been limiting but rather enabling and liberating.

Happy Baking

In an attempt to get me going again after spending in time in hospital post O-Levels I spent a term at cookery school. Although finding it immensely difficulty socially and getting rather confused and lost almost every day I did come away with an ability to cook albeit slowly & occasional strop.  What I have discovered is that baking relaxes me.  Indeed there are times when I know I need to bake sub consciously even though I don't feel particularly bad on the surface.  

This certainly improves relations with the neighbours as I end up baking more than we can eat.

So I've decided every now and again to post one of my favourite recipes.  Every recipe I post is one that I have given to others and has been followed successfully by them.

HEALTHY CAKE OR CHUCK, CHOP, CHUCK CAKE

1.2kg fruit - this should give you a good kilo after peeling, coring and stoning the fruit. 

I usually use apples, pears and dates.  However in the summer/autumn I’ll use apples and whatever is relatively cheap on the market plums, peaches, nectarines, apricots, raspberries, blackberries or blueberries. The choice is yours.

225g butter - preferably unsalted

250g castor sugar

5 eggs

275g plain flour sifted with ½ tsp of salt.

You will need either a 9"/20cm tin or 2 1lb loaf tins. Either butter and flour them or 

use greaseproof liners

Method 

Preheat oven to gas mark 3, 160ºC, 325ºF.  Put baking sheet in.

1. Cream the butter then beat in the sugar well.
2. Add the eggs one at a time beating well until it is a light cream. Add a desertspoon             of flour with each egg.
3. Stir in the sifted flour and salt with a wooden spoon.
4. Wash, peel, core as appropriate the fruit you've chosen.  Cut the fruit, with the exception of one apple (2 if very small) and some dates into largish chunks.  Fold carefully into the cake mixture.
5. Pour the mixture into a buttered and floured 20cm/9” tin or 2 1lb loaf tins.
6. Peel, core and slice the remaining apple into rings and press down lightly onto the cake top.  Halve the dates and add to the top. If using loaf tins you will need to cut the apple rings in half/
7.  Put in the oven on the baking tin and bake for 1¾ - 2 hours.  Check after about 1½ hours.  If it’s getting a bit brown cover with foil.  Will be firm to touch when it’s ready.
8. Leave to cool in the tins for 5 minutes before removing and leaving on cooling racks.

 Does keep well and will freeze.

By the way I call it a healthy cake because of all the fruit that goes in it!

Happy Baking

Oh yes I should say that I was prompted to post this by Richard Worth's posting of his very successful loaves today.

Stuck in Traffic

I reckon there are three types of drivers when it comes to traffic jams.

Firstly there is the deluded driver who believes that by huffing and puffing, letting everyone know their annoyance at the delay and continually checking the time, they will speed up the dispersal of the cars.  In truth all they are doing is unsettling their mood that may affect their judgement for the rest of the journey if not the whole day.

Secondly there is the fretter, the 'if only' driver who reproaches themself for not taking the alternative route, getting off one junction earlier, checking for roadworks before leaving or failing to begin their journey earlier.  Well it's true things may have been different if another option had been taken but not necessarily better. I'm sure I'm not the only person who has turned off at the sight of a long traffic jam only to join another one created by drivers with a similar idea.  If the fretter had left earlier they may simply have ended up closer to the front of the traffic jam and, God forbid, possibly involved in it.  All that can be said for certain is that guilt and worry will have been provoked and that is not a healthy state of mind to be in.

Thirdly there is the driver for whom light has dawned - there is nothing they can do that will make the traffic jam disappear.  This driver realises the opportunity to take alternative routes or leaving earlier has gone and that there is nothing to be gained from brooding on this fact apart of course from a brief assessment of what has happened for future reference.  What can be done is leave the radio on for traffic alerts so the driver stays up-to-date, to relax a bit, chat to passengers, take charge by replanning the day and being ready to move ahead when it is possible.

What character is most likely to drive on most safely and in the the best mood for the rest of the day? 

Well dealing with the consequences of Encephalitis is a bit like that.  This is a very simplified approach I admit but it is based on my own experience of now 27 years living with acquired brain injury and depression.

It is immensely frustrating not being able to do what been as easy as breathing.  The desire to be able to do it NOW is overwhelming.  Even when the ability has been relearned, remembered, recovered the stamina to do it as much or as long as you want is missing.  Then you simply shift the frustration to why can't I do it so easily or for as long.

Well in case you've forgotten, which you won't, the poor old brain and body has been through quite a lot.  Forcing it to 'travel' at a pace that is beyond if just risks complete exhaustion and pulling you back down.

Equally fretting about and worrying that you are not following the route through life you had planned won't change the fact that you've had encephalitis in one form or another.  It won't contribute anything positive as to how you move forward.  Continually reflecting on it will give you a degree in resentment and/or guilt.  I try very hard not to 'what if' as 'what if' didn't happen nor will it happen.  This does require discipline, is not always successful but on the whole caging these thoughts so they don't pollute me is worthwhile.

Then there is the third driver of life.  Someone who acknowledges that things have happened in both the longer and more recent past, someone who listens for guidance as to what has happened in the past and is happening in the present and who seeks to put themself in the best position to move forward with their life.  As the traffic jam moves be it by a couple of yards, a hundred yards or even reaches second gear it is always moving forward.  One only reverses to let emergency vehicle through before regaining that distance.

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.