The Ellis Family

Tom Ellis developed chronic pain after falling on ice. His father Richard describes how the family pulled together to get through their ‘year from hell’

At the start of 2012 the nation was full of optimism, anticipation and great expectation for the forthcoming year: a year that would allow us to witness the greatest sporting spectacular live on our very own doorstep; a royal celebration that would lift our spirits from the economic gloom and a summer of record breaking heat (again!). For my Team Ellis (GBR) it was the start of the Year from Hell: a year of unknowns, questioning and soul searching.

In March my son fell on the ice on his way to school. Reaching out to steady his fall he injured his right wrist, which he had broken the previous year. He was taken to Leeds General Infirmary and he spent the next fortnight with his wrist in plaster.

Towards the end of the fortnight Tom began to complain about shooting pains in his wrist and tingling sensations he had not felt before. He also expressed concern regarding his fingers which had become rigid and unable to grasp. At a review meeting with the consultant it was decided that the cast was too tight and a new one was applied. The next day Tom’s school contacted us to advise that his right wrist had developed a claw like distortion for no reason. We immediately raced down to the casualty department to search for urgent medical treatment and comfort for our frightened young son. Throughout this time various tests were conducted: was the new cast too tight? Was he calcium deficient? The questions, unlike the answers, were endless.

Frightened and bewildered, it was at this time that we were introduced to a new acquaintance of Tom’s: one who was most unwelcome; one who would be at his side and plague our family for some time to come. This acquaintance was called Chronic Pain Syndrome.

The initial tests showed no results and he was admitted to a general ward. During this time Tom had several complete body spasm attacks of agonising pain. Grasping hold of the bed with his left hand he would scream out whilst his new acquaintance introduced himself. We as parents looked on helplessly, reaching out for support from the medical staff who were also in a state of confusion.

When the spasm attacks faded Tom would sleep and we would look in at our son, who earlier had shouted “Why can’t you make this stop, Daddy?!” as loud as he could. We as parents felt helpless and unsupportive to our son in his hour of need. What was causing this unprecedented pain in our boy? Why were the doctors not racing to his bedside with a “golden pill” for him to take? Would he wake from his sleep and this nightmare for us all be over? The answer would be “No”. Tom would wake from his silence only to announce that he could feel another attack looming.

Once again we were forced to watch on from the sidelines as Tom battled for peace and normality. After several days in hospital we were summoned to meet with the consultant in charge of Tom’s case. This was it! A solution had been found; our prayers had been answered. No more watching my little pal screaming whilst shrouded in agonising pain. My wife and I sat in the consultant’s office and we eagerly awaited the news that the results had come back and we were homeward bound!

The news that we were greeted with turned our world upside down in an instant …. “There is nothing we can do for Tom in the short term”….. “He has Chronic Pain Syndrome with distortion”….. “The medication we will prescribe will be trial and error and will not work for at least 3 months”…. “There is no medication that will stop his attacks other than our prescribed treatment…. Nothing”. Even though I tried at no stage did I hear him say that we would be going home to a takeaway and a night in front of the T.V!

Tom eventually was discharged as little else could be done for him in hospital and it was then that we began our journey of managing Tom’s condition as a family.

His attacks would come at any time of day, wherever we were. His new acquaintance was not afraid to wake him through the night as school was now not an option for Tom. The attacks were just as regular, lasted longer and were accompanied with involuntary arm and leg movements. Tom’s sisters would often witness him writhing around in pain in the lounge or, in one instance, a car park floor. Trips to the rugby match would be cut short as he was “going to have a do!” Ambulances were called on several occasions (and often refused to come) and we’d be greeted at the A&E with the question “Chronic Pain Syndrome??”

One of the most poignant instances was when Tom was celebrating his birthday, obviously a key date for Tom. This was a big day for him; a new start, new clothes, new outlook… only to be rushed down to A&E with a new spasm attack.

During this time I also lost my job and my father-in-law was left paralysed as the result of a stroke. Our precious world as we had known it was beginning to crumble but this was a time when the family needed more support than ever. Days were spent managing Tom’s condition, supporting my father-in-law (who was in a separate hospital), looking for work and ensuring that our two daughters maintained some form of routine. It was chaotic and spiritually draining. The royal celebrations and Olympic Games were lost for us in a sea of confusion, self-analysis (why us?) and suffering. Sadly my father-in-law later passed away.

It was key to remain positive throughout the dark times and to adhere to prescribed medication. During our dark days spirits were low and many a tear was shed, but we were Team Ellis (GBR)! We had to remain strong.

We used a number of techniques and strategies to remain positive throughout this time. Not just for Tom’s benefit but also ours as we were a team and a force to be reckoned with!

This coping strategy can be best described as MUCHness:

M – Music
The strength that music can provide during dark times can never be underestimated. The only condition is that “moody” music was banned in the house. The music we played had to be upbeat, fun and joyous: any song that would lift our spirits. Try it! It works! It’s funny how your mood can turn with a song from The Life of Brian!

U – Understanding
Fighting the situation and circumstance was never going to have a positive outcome. It was important to understand Tom’s condition, to accept and appreciate that the medication would eventually do its job. We needed to understand the situation in order to move on. “What lies behind you and what lies in front of you pales into comparison to what lies inside you” (Ralph Emerson).

C – Celebration!
Our journey has been rocky and certainly uncharted. Each day has been a challenge. We have however ensured that each achievement, however small, has been acknowledged and celebrated.

H – Humour
Our strongest ally in our fight against the year from hell! We have tried to laugh and find happiness in everything that we have done or seen. The ability to smile and laugh about the smallest of things should never be underestimated. A smile is a curve that sets everything straight!

I am delighted to say that Tom is now on the road to recovery and is making great progress. He, just like us, is now beginning to rebuild and take control of his life again. Would we re-live 2012? Not on your life! Will we take the learning and knowledge we have gained from it? Definitely!

The key message – keep smiling even when you are crying!

Richard