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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

Comments

Gill Lambert

You tru­ly have had a rough ride but so proud to say that you are my fam­i­ly, hang on in there Team xxxx

You broke me again Rich! Such inspi­ra­tion and per­spec­tive to max­imise resilience and share to improve the out­look for oth­ers! Thank you and well done to you and your fam­i­ly for being such war­riors and great role mod­els for all fam­i­lies who strug­gle with life’s chal­lenges from time to time.

Thank you…today is my daugh­ters 12th birthday..and after 3 months of tests and con­sul­tants it is clear she has Chron­ic Pain Syndrome…allodynia and god awful spasms…I laughed because I com­plete­ly recog­nise the shock that there is no gold­en pill and that.no one feels the need to rush to the aid of a child in ago­nis­ing spasms…I had a stand up.row with an A and E doc­tor who said he could­nt pre­scribe high­er lev­el pain killers because she was a month off being 12…god..i will think of MUCH­ness and work on positivity…no.more depress­ing radio…upbeat here we come! I hope Tom is doing well…x

Thanks so much! MUCH­ness here we come — My daugh­ter (12) has the same con­di­tion, or some­thing sim­i­lar — Allo­dy­nia across her back and awful spasms — After months of tests we are just com­ing to terms with the like­li­hood that the best we can do is man­age it — I some­times don’t know what to do with the awful­ness of hav­ing no answer to the “Mum, please make it stop!” and the frus­tra­tion with a slow, vague and some­times dis­be­liev­ing health ser­vice — But we have now made it to the love­ly team at the GOSH Chil­dren’s Pain Clin­ic, so have some hope — Dig­ging in for the long haul now and work­ing out how we are going to make it through the next…what? 3 months, 6, a year, two years? — Today, though, after read­ing your piece, we put on loud music and danced around the lounge, so thank you!

Just in case any­one else is doing what I was doing and des­per­ate­ly search­ing for infor­ma­tion for chil­dren with Chron­ic Pain — an update — 3 months on my daugh­ter is doing much bet­ter, but still only part time at school. The most fan­tas­tic resource we have used was Dr Rachael Coak­ley’s book on When Your Child Hurts, https://www.amazon.co.uk/When-Your-Child-Hurts-Strategies/dp/0300204655 — which has been a life­saver, and the won­der­ful web­sites ‑Pain Bytes from Aus­tralian Pain Net­work — http://www.aci.health.nsw.gov.au/chronic-pain/painbytes and The Com­fort Abil­i­ty in the States — https://www.thecomfortability.com/, which was fan­tas­ti­cal­ly helpful.

Louise thank you for this I have ordered the book. My daugh­ter is cur­rent­ly lis­ten­ing to the med­i­ta­tion audio in bed and we will watch the series over the next few days. Xx

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