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


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