Monday, June 2, 2014

GBS Update: Monday 2nd June 2014

It's a long time since I last wrote an update on my recovery from Guillain-Barré Syndrome and after over four years the journey is far from over.  I have chosen to write again because it is now looking as though I will be living with a largely hidden yet significant element of disability into the future.

Most of you reading this will have been aware of what happened to me four years ago, thanks to the faithful efforts of my parents to keep people updated.  Many of you have told me yourselves in the intervening years how those updates almost became part of your daily routine for a short season and I will always be grateful for your corporate and individual response to Mum and Dad's requests for prayer.  At that time, a great deal could change in a 24 hour period, bringing many dangers and challenges yet also many new reasons to be thankful each day as my health began to improve.  It felt like an eternity day by day yet, looking back, the healing I experienced was rapid, especially considering the severity of my condition.

I unapologetically look back like this on a daily basis, often to the amusement and frustration of the people around me (which, in itself, is amusing and frustrating to witness!).  Mum and Dad find it helpful too.  Mum calls it "looking back to look forward": when it looks like there have been too few improvements over the course of a month, say, looking back to the beginning of this journey reminds me of the amazing things that have happened so far, which gives me a different perspective as I deal with the new limitations of my body day by day.

It has been by 'looking back to look forward' that I have grown to realise that although I continue to see small, incremental changes in my body over the course of months, there are significant residual problems that are generally invisible to those around me.  Perhaps this is why people who have not experienced anything like this sort of hidden, non-wheelchair-bound disability can struggle to grasp what I struggle with and why!

The type of GBS I experienced has another name: Acute Inflammatory Demyelinating Polyneuropathy; it's the word 'acute' that is acknowledged by specialists to be potentially misleading.  The short, sharp period of intense illness certainly makes for an acute condition for a number of weeks or months however the residual effects many people are permanently left with create a chronic condition not half as interesting to read, or indeed to write, about compared with the initial months (sorry!).  If I were to return to sending daily, weekly or even monthly updates, the reality is that they would simply read "no change", and not because I am fully better: I'm not!

Having said that, there have been successes in the last 18 months:

- In July, I completed my induction year into teaching, working full time
- In August, I moved out from Mum and Dad's and have been able to live independently (regularly accepting the offer of help from my kind Mum!) since then
- In September I started a new job in Winchester, again working full time

These developments in themselves have resulted in pros and cons.  There have been improvements in my energy levels compared with July 2012 before I started teaching; as a result my stamina has benefited.  With hindsight, I can see that it was in managing the last two items in particular that I overstretched myself, however: my new school was wonderful in so many ways but its distance from my new home increased my daily commute by a factor of 4, to over 2 hours each day.  This would take its toll on anyone so it had a corresponding, magnified effect on me.  I made changes to my lifestyle, cutting out some activities and getting more sleep but in the end there was one week when, despite 6:30pm bedtimes the previous week, I ended up off work for almost two weeks in January and February and I was then also signed off for the final weeks of the spring term.  The pain that I live with every day had massively increased and I am now back on the maximum dose of one particular painkiller: the same dosage as when I was in hospital in 2010.

How much of this was due to moving out and how much was due to the new job I don't know (it was probably a combination).  What is now clear is, firstly, that the impact of each has been cumulative over time, rather than immediate.  Secondly, having committed myself to a mortgage and a place of my own that I already loved, the only one of those two things I could reasonably change was my job (again).  So after Easter I started a new job at Hamble Community Sports College, just outside Southampton.  Already, many of the previous physical challenges have been alleviated, if not eliminated; for example, my commute is back to 15-20 minutes, the site is completely flat and the brand new building I am working in has everything I need to hand.

Nevertheless, I have concerns about living with fluctuating levels of pain, fatigue and weakness going forward and at my annual appointment with my neurology consultant last week I asked some of my questions on these topics.  The answers were somewhat inconclusive (it is not certain that the pain I experience is a direct consequence of GBS itself) and consequently I am expecting to receive an appointment for an MRI scan of my lower back and hips within the next four weeks, followed by a referral either to rheumatology or the pain clinic.  It sounds like the consultant has some things in mind that he would like to rule in or out, although he did not share these with me.

This has been a long journey so far and, as I said earlier, I will always be grateful for the recovery I have experienced.  The journey is far from over, however; as things stand, I will be living with an element of disability indefinitely.  I have believed from the outset that anything is possible so perhaps, if you pray and have time to remember me, you wouldn’t mind asking God for my complete healing.

This poem, shared with me in the hardest of times in ICU, continues to speak to me today, regardless of the outcomes of medical appointments:

He giveth more grace as burdens grow greater,
He sendeth more strength as our labors increase;
To added afflictions He addeth His mercy,
To multiplied trials His multiplied peace.

When we have exhausted our store of endurance,
When our strength has failed ere the day is half done,
When we reach the end of our hoarded resources
Our Father’s full giving is only begun.

Fear not that thy need shall exceed His provision,
Our God ever yearns His resources to share;
Lean hard on the arm everlasting, availing;
The Father both thee and thy load will upbear.

His love has no limits, His grace has no measure,
His power no boundary known unto men;
For out of His infinite riches in Jesus
He giveth, and giveth, and giveth again.

With my love and thanks as always,

Luke x

Sunday, October 28, 2012

Great South Waddle 5k

My recovery from Guillain-Barré 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