GBS Update: Friday 19th June 2015

These blog updates began five years ago. I had been very ill in hospital and, being Christians, we had friends around the world who wanted to pray up-to-date prayers day by day. There was a time when my health was so unstable that these ‘prayer updates’ were often out of date as soon as they were written, but they were something to go on during a desperately dark time.

I came out of hospital disabled but stable so, by then, we were only writing a couple of times a week. As my recovery slowed, the updates became more infrequent – and not because I had nothing to ask, but because there was nothing new to say. The rate of change was (still is) exceptionally slow. I was thankful to reach a point not necessarily of full recovery but of stability and a new kind of normality.

All of this is by way of reminder for old friends and introduction for new: what follows is written primarily to request prayer from my family, close friends and fellow Christians. I’m asking that you remember me in your prayers since I personally believe that God answers the prayers of men and women. I post such requests publicly as they tell a story of which I am unashamed. In order to make them, I have to share quite a lot of information, but don’t mistake them to be “Luke’s Newsletter”. Anyone is welcome to read but all who do are reminded of my purpose in writing: prayer.

The last public update was in August, when one of my main concerns was being allowed to attend an event. If I felt strongly about this at the time, the past year has truly shifted my perspective.

In October, I reached a point where pain levels were intolerable. Professionals still didn’t know exactly what was going on and I had reached the maximum permitted levels of all the medications that would make any difference. Only lying still, flat on my back would reduce the levels of pain so I had to stop going to work. I never went back. I moved back to Mum and Dad’s and I was spending much of each day asleep, unable to properly wake up. In the words of the professionals, my life had “ground to a halt”.

The medical appointments continued and by Christmas the Pain Service had helped to put together most of the big picture. There are three separate factors:

  1. The residual effects of GBS including pain, fatigue, autonomic dysfunction (profuse, sudden sweating all over) and balance/mobility issues. But we know from the past few years that these GBS problems can be manageable, indeed that it is possible to maintain a full-time working life despite these problems. So the fact that the symptoms became worse indicated something else was going on
  2. We now know there is a small slip in my lower spine caused by a fracture in one of the tiny bones that holds the vertebrae together (not the same thing as a slipped disc). Until Christmas we hadn’t known whether the slip was stable so finding out that it was was relieving (but frustrating on account of having stayed still for three months in case it developed into a higher grade slip – during which time much of my general stamina and everyday fitness, hard won over five years, was unpicked). Many people with this type of problem go undiagnosed for life so, like the GBS problems, it should be possible to live with day to day
  3. It had been suspected for some time that I was stopping breathing at night and sleep studies since Christmas have shown my oxygen levels to dip 36 times per hour on average. This makes sense of the extreme fatigue I have experienced over the past years, which has an inherent impact on pain. It is the severest level of Obstructive Sleep Apnoea.

These three things when taken together meant that the persistent pain that I have experienced as ‘normal’ since GBS is amplified. In other words, whereas pain normally signals tissue damage, in this case it’s the pain signalling process itself that has gone wrong. There’s no traffic incident, the traffic lights are just broken. Chronic neuropathic pain itself could be the diagnosis, in which case we need dig no deeper for an explanation. Watch Pain in Five Minutes if you’re interested to hear more.

Walks around Salisbury District Hospital were
beautiful and became part of my therapy

Is it possible that I unwittingly pushed myself further or more quickly than was truly manageable? Maybe. Could what I have experienced lately be the payback? Only time will tell.

There is no way of undoing any of these aspects. They are a fact of life and the treatment is to ‘conservatively’ manage their effects. This means combining medication (which is now prescribed over the licensed dosage and is finally making a difference) and input from physiotherapy, hydrotherapy, occupational therapy and clinical psychology.

I was an inpatient at the Wessex Rehabilitation Centre at Salisbury District Hospital a few days a week from January, commuting daily since my breathing problems prohibited overnight stays. At first, two hospital days would wipe me out for the following five but, before I was discharged, I could handle three days much more readily and now I’m back at my flat most of the time as I become progressively more active. Being a patient there revolutionised my understanding of what can be understood about my condition and gave me a sense of both acceptance and control that I have not had in well over a year.

In December, having been off work for three months, I began to consider what I would choose to spend the next period of time doing if a “full recovery” (whatever that phrase actually means, for it’s now about as meaningful to me as the clichéd “back to normal”) wasn’t on the cards. Then, in January, Ofsted required my school to improve – not for the first time – and published a report. It is common knowledge often reported that an unhelpful, external, faceless pressure descends unfairly on schools following such reports. I felt this type of pressure – even with the best will in the world – would likely create conditions not best suited to providing adequate support.

So, by the end of January I had privately decided that, if the opportunity arose, I would leave. It did, so I now have the space and time you don’t get with a full-time teaching commitment to try find a new work-life balance, as well as to continue recovery. There has naturally been a grief in my decision but any teacher in a school required by Ofsted to improve will tell you how difficult life can be, so I know I have made the best decision for me, for now. I do hope to return to classroom teaching in some form in the future.

In the meantime I am doing some private tutoring, I’m registered as a GCSE Maths examiner and I’m getting ready to rent out my spare room to help with costs. I’m also taking some time to prepare for what will be my main focus in the years immediately ahead: a masters and research project in education. Assuming I can fund it beyond the first year, I have a place open at the University of Southampton. It’s an opportunity to pursue a relevant professional interest at a more reasonable and more appropriately flexible physical pace than full-time classroom teaching.

My main prayer requests are for ongoing improvements to my physical health. I’m aware that my body has limitations but I want to be able to get the most out of the body I have. I’m hoping for improvements in the main symptoms:

1. Pain

2. Fatigue

3. Autonomic dysfunction

4. Balance/mobility

I would also like to ask you pray for the strength and stamina that I will need in increasing measure in the months ahead as I continue therapy under my own steam.

I am grateful for the way that possibilities have opened up for me in terms of work and study. I personally am praying that this remains the case and for wisdom to choose the best possible path.

I necessarily became almost completely isolated (but for my lovely family) when at my worst. Despite the benefit of more support than I deserve, I still struggle to initiate and respond to attempts reconnect even now that things are improving. The thought of re-engaging just seems overwhelming, so perhaps you could pray for me in this respect also.

There are three little words that have the potential to bring us as individuals more joy than we thought possible and a peace that doesn’t make sense through troubling circumstances.

God. With. Us.

That, for me, is an unshakeable truth that has remained constant. I feel the benefit of it every day. Ultimately, it’s a more important fact to me than how much pain I am in but, as well as accepting and enjoying that thought, I happily ask my family and friends to stand with me in my hopes for the future, as I hope to stand with you in yours.

I am very grateful.

Much love,

Luke x




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