Sunday, October 28, 2012

Great South Waddle 5k

My recovery from Guillain-BarrĂ© Syndrome has taken me through a number of different stages but it has been rare to see more than one milestone come and go at a time.  Yet that is exactly what happened this weekend: on Friday I completed my eighth week of full-time teaching, breathing a sigh of relief at the prospect of half term; the next morning I took part in the Great South Run 5k for three GBS-related charities!

At the time of the last update I had just heard that I had passed my final teaching practice, making me a qualified teacher.  I had a lot of fun training at Thornden, where I stayed on for another half term; the approach the staff and my university tutor took made it possible for me to complete the PGCE in my own time.  I owe the staff a debt of gratitude and I came away having made some great friends too.  

Over the summer, inspired in part by the Olympics but also aware that I had let my fitness slip whilst returning to teaching, I focused on exercise.  I signed up for the Great South Run 5k so I could raise some money for charity whilst also motivating myself to regain a level of fitness.  I chose the two charities representing the Neurosciences ICUs where I was taken care of in Sheffield (Neurocare: 20%) and Southampton (Smile4Wessex: 40%).  I visited both units before doing the run; whereas I'm used to visiting Southampton, the Sheffield trip was rather emotional! Although it has been renamed and moved to a different floor of the Hallamshire since I was an in-patient, some of the staff who cared for me were on duty in the new Critical Care Unit when I visited with Mum and Dad.  It was lovely to be able to say thank you and have a chat.  As my third charity I chose the GBS Support Group (40%), who fund research into the condition.  

As you may have picked up, it wasn't long before I was contacted by a member of the local press who wanted to write a feature on the run.  If you are interested, you can see the photos of the article as it appeared in the Southampton Daily Echo here, or access it via their website.  It also featured a week or two later in the Hampshire Chronicle.  This was an interesting talking point with my new pupils!

My Dad (remembering a pact we made in ICU!) agreed to support me with the run by also signing up.  I ran or waddled all the way around the course buoyed by the race volunteers, music and the picturesque view across the Solent and despite some weakness and pain in my ankles made it around in less than the hour I feared! At times, as I made my way around the course, I was overwhelmed with gratitude and wonder at the fact that I was able to be out 'running' (waddling) on such a beautifully clear (albeit freezing cold!) day! There is still lots for me to be working on in terms of recovering full fitness, but to date my three charities have between them received £740 including Gift Aid, thanks to the generosity of my sponsors.  

In the years to come I hope to progress to eventually run a marathon.  This feels a long way off right now but I keep in mind that two years ago I was still in a wheelchair and could never have imagined being able to run again.  I am grateful for the past and confidently hopeful for the future!

If you pray, and would like to pray for me, over the coming months I will be focusing on:
  • Continuing to recover physical strength, particularly in my feet, but also general fitness;
  • Being the best teacher I can be whilst also continuing to regain stamina for work;
  • Continuing to manage pain on a daily basis. 
I will be having more tests (electromyography and nerve conduction studies) after half term, which, as well as giving the doctors an idea of how nerve repair is going generally, may help explain some specific problems I have been having with grip in my hands.  

I so appreciate the care and concern shown consistently by so many of you through your prayers and kind messages.  You are amazing people! Thank you.  

Much love,  

Luke x

P.S. If you would like to sponsor me, it's not too late; my three charities are still accepting donations via my fundraising page!

Tuesday, September 18, 2012

Southern Daily Echo Article

Friends from further afield (Sussex, Coventry... New Zealand) have asked if there is a way they can read today's Echo article, as it's not been published online yet. I have taken a couple of photographs; I hope they're legible!



Saturday, June 2, 2012

GBS Update: Saturday 2nd June 2012

The last four months have brought probably the biggest changes for me since I got rid of the wheelchair.

I am continuing to see steady improvements in my stamina as well as the results of nerve repair, which is encouraging.  I have started on Propranalol, a drug which has helped to temper the tremor and the sweating somewhat, although I feel these are both still noticeable, particularly the latter!

The most exciting developments however, have been that on 26th March - two years to the day since I had to stop teaching to be admitted to hospital -  I was reinstated on the University of Southampton's PGCE course.  This meant that the work I had been doing to build up my stamina could now begin to count towards completing the course.

The Occupational Health advisor for the university advised an extremely protracted period of build-up, but I thought this unnecessary; so under the careful supervision of a long-suffering university tutor and a very supportive school I threw myself into the teaching practice.  It soon became clear that things were going well and I would be able to complete the course at the same point as this year's cohort of PGCE students.  So yesterday I passed my final teaching practice with the highest grade - remarkable, given the circumstances!

This is the good news I needed, since in March I was offered a full-time job for September at a local comprehensive school, assuming I was to qualify this summer.  So in just a few months I will be a Maths Teacher at Wyvern College in Fair Oak, only a few miles from home.

The consultant neurologist has told me to continue to expect improvements over the coming year, whilst the rehab consultant has discharged me from her clinic; I'm therefore now just under one consultant at Southampton General Hospital.

Now that I have passed the teaching practice, my new priorities are to get the remaining boxes ticked to pass the PGCE and to focus on physical fitness.  I will continue going into school as an assistant until the end of term in order to keep the stamina up, but I will have more time which will allow me to rebuild my fitness after months of focusing on work.

So thank you once again for your ongoing prayer and concern.  It constantly amazes me how interested people are in what is going on, and I am grateful for everything that has happened.  If you would like to pray for me, I would be very grateful, particularly for:

  • Continued improvements over the coming year
  • An increase in my fitness and stamina as I focus on this over the summer
  • A good start in September at Wyvern
I am extremely grateful for all the prayers and support I have received - my recovery is in a new phase, but it is still going on! 

Love Luke x

Monday, February 6, 2012

GBS Update: Monday 6th February 2012

Just a short note to thank you for your recent prayers (particularly along the lines of my tremor) and to quickly update you; I met with a doctor from the Neurological Outpatients department today, and he has provided some much needed reassurance!

His opinion is that the tremor is likely to be a product of the GBS, and is likely to improve over the next year (although no-one knows exactly by how much). In the meantime he has suggested a new drug I could try which would dampen down the tremor, and also probably help the sweating and temperature control difficulties I have been having.

The doctor I saw today has known me longer than the one I saw in November, and is also a neurology specialist, so I am pleased that his opinion matches what my parents and I hoped this tremor was all the way along. It is a massive weight off my mind, so thank you for your prayers!

This week I am attempting to get into school every day, even if just for an hour. I'm settling really well in the new placement and starting to build up my stamina again - I've reached a point where my course leader at university has been able to ask the Occupational Health advisor to see me. This is an essential step in being officially reinstated on the course, so there is much to be thankful for!

Thank you once again - your prayers are making all the difference!

Luke x

Sunday, January 15, 2012

GBS Update: Friday 13th January 2012

It's just over two months since the last update, and there have been a number of developments in that time which I wanted to let you know about.  These updates have always been multifunctional, updating a number of different groups of people about how things are progressing.  Please feel free to skip to the prayer points at the end if you're most interested in the headlines!

In November I had an appointment with my consultant for rehab (Dr. Sumanasuriya).  This was both encouraging (not least because it gives me an excuse to visit the hospital teams who cared for me while I was a patient), but also a little disconcerting.  I showed her the tremor in my hands, and she said confidently that she did not recognise it as a GBS-related tremor.  She also said (contrary to my memory of things) that she did not remember, nor had any record of, this sort of tremor when I was an in-patient with her on the rehabilitation ward.

She felt that there may be a number of reasons for the tremor, among them a thyroid problem, the medication I'm on, or a relatively common neurological disorder called Essential Tremor (ET).

I received my blood test results from the GP yesterday which ruled out any thyroid problems, and although I already have an appointment with my neurologist consultant (Dr. Katifi) in early February for GBS, I have now been referred to him by the rehab consultant for the tremor as a separate condition.

The main reason I found this news disconcerting is that Essential Tremor is degenerative and there is no cure (although some drugs can alleviate the effects of the tremor).  Whereas I had assumed that the tremor was one of the after-effects of the GBS, which would slowly improve over time, it is possible that this is something which will actually worsen with time.

So I'm looking forward to my appointment at Neurological Outpatients on February 6th as I'd really like to find out what this is, and to be able to move towards treating it if possible, or at the very least changing my drugs to see if we can improve things.  It seems unlikely to me that it is brought on by the drugs I'm on, because as I have weaned off the anticonvulsant (which is one of the drugs used to treat ET) it has worsened, not improved.

On the more positive side, my stamina and strength have been gradually building to the point where I am about to start using a treadmill again, and there are now plans in place for me to formally return to my PGCE course.

From next week I will be at the school I attended as a pupil one day a week (voluntarily, initially), building up gradually toward officially re-joining the course, taking half a class, and then upwards to 50% of a qualified teacher's timetable.  I'm still hoping to be qualified by the end of this academic year, which would enable me to search for a job beginning in September.

For those of you who pray, I would love you to pray along the following lines:
  • Thank God that, as my Dad said the other day, we're talking about a tremor in the hands and not about the ability to walk! 
  • For peace of mind in the uncertainty, that I would have a sense of what God has for me in this. 
  • That we would be able to make satisfactory progress in the appointment with Dr. Katifi on Monday 6th February, that he will be able to perceive what the problem is and how to solve it. 
  • That my general strength and stamina would continue to improve throughout the year, enabling me to get back to work as soon as possible.
  • Thank God for a highly cooperative university and two local schools; that I would be able to take advantage of the arrangements on offer and progress well on the PGCE course. 
Thank you for your ongoing interest and support, it is not taken lightly and very much appreciated!

Love Luke x

Friday, October 28, 2011

GBS Update: Friday 28th October 2011

Yesterday it was nineteen months since I was admitted to the Royal Hallamshire Hospital in Sheffield.  One of the timeframes we were given at the time was that I could be in Intensive Care for up to eighteen months, so I hoped it might be encouraging to write down where the recovery is at.  When compared with the idea that at this point in time I may have been only one month out of ICU, it is happy news!

Recently my physiotherapist decided that, for the first time in this recovery, my unusual walking gait has more to do with weakness in my right leg than nerve damage.  This means that, whereas normally all I can really do is wait for nerve repair to happen and 'go with it', I am beginning to have more things that I can actively work on.  It is encouraging to get more control back, bit by bit.

There is still nerve repair that needs to happen, however.  This is in the feet, centering around the big toes.  They comprise such a small part of the body, yet the difference they are making to my balance as they gradually come back to life is tremendous.

Other aspects of the recovery still need work as well.  My general body strength needs improvement, as does my stamina and energy levels.  I also have been left with a tremor in my hands which varies in magnitude from day to day.  I have adapted to live with it for the moment and the neurologists don't expect further improvement in this specific area, but I would obviously much prefer my hands to get completely back to normal!

The consultant expects my recovery to go on until approximately March 2012, at which point he expects progress to stagnate, so I still have time to see changes before I should begin to be thinking about learning to live with what I have regained.

Obviously, my desire from the beginning has been that I would effect a full recovery, and that is what I am still aiming for.  If you pray, that is the main thing I would love you to pray for me!

On the more practical side, my big goal at the moment is still to complete my PGCE so as to qualify as a teacher.  The prospect is a daunting one, and yet there are a number of open doors in front of me which are making it feel more do-able.

The university, as I have shared before, have been supportive in allowing me to take on bite-sized chunks as I am able to do so, building up to a full-time, three-month placement.  There is also the local school I worked in two years ago, who have offered to help me build up to that level of stamina.  They have been incredibly open to the idea of me going in and getting involved again, which I'm really grateful for.

In order to start to earn some money, I have been able to plan to start doing some work for my Dad, who has set up a company and is starting to work on his own.  The fact that I some experience in his field of work through my degree is working to both of our advantages, enabling me to earn some money, keep my brain ticking over, and enabling him to take on more work.

Possibly the biggest challenge with the next phase will be trying to get the balance right between:

  • Physical exercise and rehabilitation
  • Getting back to the classroom
  • Producing the academic work in order to pass the PGCE
  • Socialising
  • Earning an income

Any one of those things alone would be enough to occupy me at the moment, with current energy levels, so I will need wisdom to know how to juggle everything.

"For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them." (Ephesians 2:10)

What happens after finishing the course, I'm not quite sure. At the moment I feel that I'd like to be able to consolidate the PGCE with at least a couple of years teaching, but we'll see.  It is likely that I will need to continue to have an expectation of incremental changes rather than leaps forward.  What I'd love during this next season is to have a growing sense of what God has prepared for me in the days ahead.

Thank you so much for your interest in this journey, I am so grateful to continue to have supporters cheering me on!

With much love,

Luke x

Thursday, August 11, 2011

GBS Update: Thursday 11th August 2011

So here we are over 16 months in, and the recovery continues.  It's hard to comprehend what it would have been like, had the doctors' initial concerns about the possibility of being in intensive care for up to 18 months been realised.

In the four months since the last update I have seen marked improvements, and I have had the privilege of meeting more of you who have been praying for me.  At Easter it was a joy to make an impromptu visit to Citygate Church in Bournemouth.  It's seven years since I left, yet to hear how earnestly people prayed for me, particularly at the darkest moments, was incredibly humbling.  So too, was a visit to St. Michael's Plas Newton, Chester, where, twenty-two years after my family moved away, the church there are still praying for my recovery.  We have been reunited with numbers of you from the past, and that is not to mention the many new faces I have met who greet me with a story of what it meant to them to be a part of this story.

I am honestly so grateful for all of you.  You may have noticed that I recently uploaded the archive of email updates from last year onto my blog, and it struck me again how much of a daily battle it was, and what stickability so many of you have shown in keeping up with progress.  Thank you so much.

If it was a daily battle back then, it remains so now, though of a different sort entirely.  Rehabilitating is not half so glamorous as intensive care!

Back at Newday
You may remember that last year, towards the end of my hospital stay, I was able to visit Newday, a Christian youth festival I worked at in the past.  That visit was in a wheelchair and, though exhilarating, was also exhausting.  In the first week of August this year however, I was at the whole event, helping out in the site office where I was able to.  Where my progress often seems invisible day-to-day, being at the event in this way highlighted to me how far I have come over the past year.

There are two ways in which my healing continues:

Nerve repair
This is ongoing, and I was told by my neurologist in June that it would be reasonable to expect the healing process to go on until about March 2012, and after that to expect to see only minimal changes.  This makes the next 7 months or so feel a bit like a recovery race, to see how much better I can get within that time.  I have been looking at ways of modifying my diet so as to encourage nerve repair, however this is incredibly difficult to do as some of the chemicals which apparently inhibit nerve repair seem to be present in most foods! I am just trying to make all the reasonable adjustments I can, whilst not getting too hung up on it.

I am still weaning off an epilepsy drug (Pregabalin) and am hoping to start weaning off the last drug (Amitriptyline) soon; both drugs have been used to control nerve pain in my feet.

So far, the nerve repair is such that I am now able to move all my toes, and I am noticing marked improvements in my balance because of this.  There is still not a full range of movement in my feet, but the signs so far have been encouraging - a full recovery is still possible.

Strength and stamina building
This aspect is something which I can expect to continue to improve for a while after the nerves have finished repairing, and is probably the element which requires more patience on my part! A funny/slow walk is easy enough to deal with, but I find not having the energy resources to live as I once did much more frustrating at times.  I have to plan in a number of days in the average week where I do very little, and if I don't take the rest times my body enforces it!

Planning how to use my energy is still very important, and I have spent more of it over the past months in testing the waters with attending events like Newday, and on a family holiday so generously given to us by friends who have been praying throughout this illness, than I have in the gym or the pool.  This has been simultaneously encouraging and frustrating! It is so good to be able to start to get back to the stuff of normal life, and to see how far things have progressed; it can also be discouraging to see how comparatively little I am still able to do compared with life as it was, pre-illness.

I am learning to take a day at a time, and that my penchant for planning and goal-setting actually doesn't get me very far in and of itself.  Learning how to react to events as they unfold is a much more useful skill to have, and is one I am having to learn as I go! As such, returning to the PGCE course is still very much on the agenda, but I am waiting to see how my energy improves.  In the meantime I find myself with a need to start to provide some of my own income again, and have been looking for do-able, part-time jobs in the local area which might also help with my rehab.  I have had one interview to date, and am still waiting to hear.

If you would like to pray for me, perhaps you could pray about the following specific things:

  • That my nerves would repair all the way down to the tips of my toes, and that the healing would continue until we see a full recovery. 
  • That I would be able to wean off the remaining drugs as quickly as possible - it would be great to be drug-free by sometime in the autumn. 
  • That my energy would continue to increase steadily, and that I would know the best and most effective ways of encouraging this, whilst also enjoying life. 
  • That I would be able to find appropriate employment which fits with my abilities and limitations, especially in the current climate where there is so much competition for the jobs that are available.  
  • For my family, who, after a difficult couple of years, are beginning to plan for the future again.  Dad is working a few days a week for himself, and enjoying it.   Mum and Dad are able to spend more time together now, and are thinking about how their time will be used in the next season.  Ben is enjoying his work and planning to move out in the autumn, as is Joel, who has a place at RADA starting in September.  I could well be the only son left at home in a matter of months! I will need to know when the appropriate time is for me to become more independent by moving out again (for the fourth time!). 
I have taken inspiration recently from this song by Chris Haines:

O troubled heart, do not be afraid
Trust the Lord your God, let not hope be swayed
He will hear your cry and will give you aid

O troubled heart, though your foes unite
Let your faith be strong and your armour bright
You shall overcome through His power and might

O troubled heart, when you're at your worst
Seek His righteosuness, put His kingdom first
He'll provide your food, and will quench your thirst

O troubled heart, when your path's unclear
He will rescue you and dispel your fear
In your greatest need He is always near


O troubled heart don't give in to sin
It will prove to be a broken cistern
Bleed you of your strength, dry you up within

O troubled heart do not be condemned
Sorrow you may feel, but God is your friend
He will give you grace to the very end

Able, He is able
To deliver, to deliver
Able, He is able
To deliver, to deliver

He is able, He is able
To deliver you
He is able, He is able

We all so appreciate your interest and support; thank you so very much.  It is not taken lightly.

With much love,

Luke x