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

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