Friday, February 20, 2015

Sticky thoughts: why did this happen?

Each year, millions of people spend long periods away from their normal everyday activities because they are dealing with a medical condition. Workers can't work; parents can't parent; entrepreneurs can't entrepen.

Anyone who has been in that situation will have experienced what I call 'sticky' thoughts: those destructive questions and frustrations you just can't kick. For what it's worth, here is one of mine.

Why did this happen?

When our circumstances change, there's a period of time - and for many it's not long - that we give ourselves to allow things time to pan out. It's a period in which you give the benefit of the doubt, hoping what's happening to you is simply a blip, maybe. My Occupational Therapist calls it denial. Perhaps how long you allow for denial depends on how gullible you are; perhaps it's more connected with your past experience. Either way, we're wired to try and piece things together; to make it all make sense, somehow.

Where would you be on this scale? If your health began to deteriorate tomorrow, for how long would you try to put the pieces together? Many people, once they've realised that - on some level, at least - their condition doesn't make any logical sense, turn to a new sticky thought: why? Why is this happening? Why me? Why now? Why not him?

There's a chance you are the rare sort of person who would be able to ask such questions without a hint of self-pity. But, whatever your motives, in my opinion the very fact that you are asking the question tells you something very important: you are beyond denial. You have reached a stage where you can begin to accept what's happened.

Getting to the stage of asking 'why?' is crucially important if you're going to be able to improve or learn to live with your condition. That said, It's not the most helpful question to ask, in my opinion. It can lead to introspection, self-pity and unhelpful thoughts. Better questions are based in the present and the future and begin with 'how'. How do I move forward; how can I start to reduce my medication; how am I going to respond to this health problem?

If you're asking 'why', see it as a signpost that you're moving on. Then think about what 'how' questions you can ask, moving forward.

Sticky thoughts: how to survive long-term illness

It doesn't make sense...

Why did this happen?

If there's anything I can do...

You're letting everyone down

This is all your fault, I feel so guilty...

It doesn't seem like you're trying...

If only we'd known...

Monday, February 16, 2015

Sticky thoughts: it doesn't make sense...

Each year, millions of people spend long periods away from their normal everyday activities because they are dealing with a medical condition. Workers can't work; parents can't parent; entrepreneurs can't entrepen.

Anyone who has been in that situation will have experienced what I call 'sticky' thoughts: those destructive questions and frustrations you just can't kick. For what it's worth, here is one of mine.

It doesn't make sense...

You're busily getting on with life and, suddenly, one screw in the engine of your life comes loose, pinging almost gleefully into thin air. You'd noticed it was loosening. Perhaps you did something to try and stop it; perhaps you didn't get a chance. Either way, it's too late now. The part is missing, you've ground to a halt and repair is the only way.

And the thought grabs you - and you can't shake it off - that this doesn't make sense. You know full well that engines don't dismantle themselves. For this to have happened, something deeper has gone wrong. Think it through, seek advice, read up on it; most try all of these and I'll bet most still end up feeling perplexed by their illness or injury. Even the most logical of long-term conditions retain a sense of mystery.

Sometimes you feel close to sleuthing out an answer, a reason, some shred of evidence that makes the pieces fit snugly together. The room goes quiet, all eyes are on you and - just as your eureka moment is about to strike - your friend or neighbour (a member of your family perhaps) chuck a spanner of a question at your still and silent engine of a life and you realise you were nowhere near. It just doesn't make sense.

My answer? You're right: it doesn't. That's because it's not supposed to. Bodies are supposed to work and, when they don't, we are supposed to be perplexed. I'm not talking about denying the reality of your pain, rather I'm talking about accepting the fact that your situation may not always make sense. For me, the moment my long-term condition makes sense in full and in detail is the moment I'll know I've truly given in and given up. For as long as I'm living with it - and that may be forever - I'll accept not only the reality of my situation, but the fact that it doesn't make sense.

You may have to help those around you to get to this point, too, by the way. People love to be able to make sense of things and they will try to make sense of you. They will fail and that's okay. Explain to them what you can, sure. But, while you're there, think about also helping them to accept the reality you're living through right now. It doesn't make sense that you're going through such a mess. It's bound to bug you now and then. Just know that the fact that it doesn't make sense makes you completely normal.

Sticky thoughts: how to survive long-term illness

It doesn't make sense...

Why did this happen?

If there's anything I can do...

You're letting everyone down

This is all your fault, I feel so guilty...

It doesn't seem like you're trying...

If only we'd known...


Monday, August 4, 2014

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

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