GBS Update: Monday 4th August 2014

Two months ago, I wrote the first update in a long while. I am writing again so soon because there have been a number of developments since then that I would value your support with and prayers for. 
At this time of year, I am regularly reminded of my old life, before GBS, when I would spend my summers heavily involved in church conferences. These events shaped my life, partly in the sense that, by 2008, two of them had became a big part of the job I was doing at the time. It can be hard not to compare what I could do then with what I can do now and be discouraged, at times. 
Nevertheless, there has been progress in the past few months and I wanted to tell you about it.
Not only have my pain levels gone up again a number of times, but the MRI scan result came back last week and shows degenerative changes in my lower spine as well as a slip between some discs and a possible disc fracture as well. According to the neurologist, these things together could account for some, but not all, of my pain. I am just glad to be getting the beginnings of a diagnosis! 
There are a number of actions that have been taken as a result: 
•  Knowing what’s causing some of the pain gave the GP the chance to add another painkiller to my medication. Those of you who are keeping count will realise that I am therefore now on more drugs than when I was discharged four years ago.
•  I’ve been referred back to my old physio, who I’ve been with since I was in hospital, but haven’t seen in two years.
•  The physio has referred me on for hydrotherapy at Royal Hampshire County Hospital. The hope is that regular prolonged exposure to a hot pool will help ease pain (the first appointment was today).
•  Hydrotherapy want to arrange a referral to a specialist musculoskeletal physio.  
•  The neurologist has recommended a referral to the spinal service at Southampton General
•  I am waiting for an appointment at the pain clinic so that my pain levels can be brought down effectively in the long term.
These issues are complications of GBS, with lack of sensory feedback to my brain and general weakness meaning I have not been able to control my body properly. 
1. New Job
The change of school at Easter has been a big encouragement. My absence rate has more than halved and this reflects how much better I have been able to manage my pain. 
2. newday
Another encouragement has been again being able to help out in the site office at newday, our family of churches’ youth festival. You may remember how exciting it was to be enabled to visit the event in a wheelchair, even when I was still a hospital patient. Once again, all the stops were pulled out in order to help me be there (ensuring I didn’t have to camp and much, much more) and I am so grateful for that. (It was a privilege, too, to see a boy with a great many more needs than myself be enabled to attend. They have truly ‘moved heaven and earth’ in order to allow everyone to attend!)
3. Memories & The ‘Little’ Things
Whenever I think back a few years, I am also made grateful again for so many things: for the dramatic experience of healing I encountered in those early months; for my family who supported me in ways that they would never have thought they would have to; for the seemingly little things that have made a massive impact, such as being signed off to drive again with the support of my blue badge, even before I could walk properly (my wheels have become my lifeline in leading a ‘normal’ life again!). The blue badge in particular has enabled us to access many things together as a family since I became ill: visits to other UK cities; holidays at Center Parcs, Florida, Germany; church conferences like newday Westpoint (although I doubt I’ll ever camp again!). 
I believe there is still more to this journey though and so I would value your prayer for the following things: 
–  Pain: the GBS pain is nerve pain, primarily in my feet and legs, but also in other places occasionally; the lower back and hip pain which is probably as a result of the findings of the MRI; other generalised pain for which a cause has not yet been found. 
–  Autonomic dysfunction: this affects my temperature control so I have to be particularly careful about the weather, not just with temperature but with rain, too. (Rain can trick my body into thinking it needs to sweat, so I keep getting colder and colder whilst sweating more and more, until I dry out and lay down for a while.)
–  Weakness: as a result of GBS I still have weakness in my feet which means I have to be very careful about the types of surface I walk on as well as walking in the dark; my core is also weak, which isn’t helping the back problems. I cannot stand for any length of time: when I walk into a room, the first thing I have to do is scan to see if there is any suitable seating.
–  Fatigue: most weekends I spend significant portions of time unable to move; indeed the only thing that seems to help the fatigue is being horizontal. I have spent periods of time (weekends and longer) back at Mum and Dad’s as I have been “taken hostage” to help me get better. 
–  Mobility: the result of all of the above is that I still have hidden yet real problems with mobility. I have to choose very carefully where to walk and, when walking, I spend much time looking down to compensate for the weakness and lack of feeling in my feet.
I have had six weeks off work with these symptoms since January; please pray that I would be able to work every day in the autumn term!
There are now six NHS services involved in treating me so please pray for wisdom (which is routinely displayed in my experience) and for speed (which is not!) as these professionals help me. Each is either involved in treating the pain, or in investigating where the pain is coming from, or both. Please pray for them:
–  GP
–  Physiotherapists
–  Neurologist
–  Hydrotherapy
–  Pain Clinic
–  Spinal Service
Westpoint is a festival close to our hearts as a family; it’s true to say that, for Mum, Dad and I, it is less about attending an event (I am not exactly devastated about not being able to camp any more!) and more about meeting with God with our church and showing our support for the grouping of churches we are part of (Commission).  Dad, in particular, gives up substantial periods of his time throughout the year to Commission, but all three of us are hoping to work and receive at Westpoint again this year.  To me personally, Westpoint has been a key encouragement over the years, for many reasons. 
Sadly, however, at the end of last week I received an accessibility pack from the Westpoint team notifying me that the use of my car has been withdrawn.  This means that I’m not going to be able to attend, for the first time.
I am not giving up, however.  If the journey so far has taught me anything, it is that anything is possible, so I would hugely value your prayers that there would be a reversal of this decision to withdraw use of my car and that God would provide a way through in what seems like an impossible situation.  
THANK YOU for standing with me over these years. Your prayers have led to amazing things and I can’t wait to be able to tell some encouraging stories next time I email.  
With much love and thankfulness, 
Luke x

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