Daily Archives: June 23, 2017

If you knew that you had a shorter time will you do things differently? Life can sometimes be like a football match. Not that we are all football fans but anyone who has seen a football match will agree that it can seem very life-like sometimes. Teams, usually 2 in number, get themselves set for a game with one purpose in mind: Winning! It is funny how both sides keep hoping to win while knowing that not more than one side will actually win. Even when beset with challenges and odds stacked for or against either side, their optimism does not diminish. The mix of events that occur throughout the match are as unpredictable as life itself. They are filled with ups and downs and not forgetting good or bad luck despite the quality of play executed by the teams. What this means in effect is that a deserving side can win based on their skill sets or  sometimes lose based on the mood of “mother luck”. How many times have we thought that a team had the winning ticket only for them to lose at the last minute swinging the victory to the less deserving side despite all their prowess? One other resemblance that a football match can have with life is the way the teams struggle and give the best when the the game is nearly over. This is very interesting considering the teams had all the time in the world to pull out their miracle winning trick. One wonders why most times, teams leave their best performance till late. It is said that we should save the best for the last but in football terms it seems foolish! If the last minute frantic performance put up by the struggling teams begin slightly earlier, they would not have to struggle so much. We all do this too…. We live like we would exist for ever. Procrastinating and shuffling through life. Wasting away valuable time… Time that we can spend more preciously… …Wisely… As soon as we see a date in sight… death! We gasp and begin to appreciate how much more we could have done with the time we had. Sickness, disease or a health scare can jolt our reality into focus. We become more aware of the fleetingness of life. Bucket lists become moulded to fit in all the “important” stuff. At that cliff edge of life when we are about to slip away we see clearly what is really important, Items spring into our bucket list and like our lives, the buckets lack the depth to contain all we truly desire to achieve. Life us simply too short even for those standing far from that cliff edge only they do not realise it. Just because you are healthy and not being given the sad news of impending death does not mean you are really safe from it. The only ones given the gift of finally appreciating life are those who can sniff the end drawing closer. In essence, when life is nearly over, it becomes clearer what enjoying life really means. We begin to try to make up for lost time. Suddenly life begins to be lived to the fullest. Interestingly, those clutching at the last ticks of life begin to be the ones who know how to enjoy life. They know how not to waste precious moments. Sadly, the moments become so precious because there becomes an actual struggle to fit every single activity into the short time left. It doesn’t have to be that way…. So I wonder …. What if you and I who are not in a position to feel that our time is running out began to be more conscious of the unpredictable nature of life…fleeting life? Would we do things differently? If so, it may be necessary to rethink how we are currently spending every moment of our lives…. We can make a conscious effort never to lose sight of the fact that life is too short. We are all closer to the end than we realise. Sometimes, our loved ones slip away and leave us wishing we had spent more time caring for them. Sometimes our circumstances change and we move far away rendering many chapters we currently ignore or take for granted closed. We can take advantage of every moment we have by living life to the fullest…. Live life to the fullest because no one knows the day or the hour they will go. We all may go in different ways. Death is only one way. Relocation, heartbreak, separation, divorce, ideological differences, work transfer, dream pursuits and so on. Suddenly the time we have to spend with our loved ones becomes scarce. Just because we sit around the table with our families today does not mean the headcounts will be complete next week! … Life happens… So why not savour  every present moment? Stop leaving till tomorrow what you can accomplish today. Delay can be dangerous. If you have friends, hang out! If you have family, spend more time together! Some of the most fun things you can share with family and friends  are free. The gift of your time will not even cost a dime! It does not matter how much you spend when you are with your loved one. What matters is the quality of the connection you achieve with that person in the time you share together. A fortune spent on a gift will only matter if a connection is made. You can also make the same connection if you spend time together. Let the acquisition of material wealth for presents not hinder the quality time that can otherwise be shared with loved ones. It may mean nothing if the time you share together does not translate into happiness for you both. Is there an activity you have always wished to perform? Why not stop putting it off ? Stop over analysing it and just do it! You may not have the time you have […]

What will you do when the time is up!

My son Otito was born with a metabolic condition called Propionic Acidaemia. This condition sadly compromised his body’s ability to breakdown proteins. The implication of this was that he suffered with lots of metabolic decompensations and his body easily built up toxins called Ammonia in his blood. As a result of this degenerative condition, he was developmentally behind for his age.  His social and communication skills where severely impaired and he mostly existed in a world of his own. As a result, he was subsequently diagnosed with severe autism and learning disabilities. It was a huge shock to me as his mother to accept that my son would be different from other children. I took steps to overcome this feeling by getting as much information as I could once the diagnosis was made. His consultant at the time was very kind and eager to explain the condition to me. Before long, I understood most of the implications of the condition for my child. I also learnt about ways to spot the early signs of a metabolic crisis. Sadly, detecting the early signs did not prevent the metabolic crises that he characteristically suffered. The rate at which they occurred meant that he became a very unstable child. He became frequently hospitalised to keep him safe. Unfortunately, that also meant that he spent more time in hospital than we all would have hoped. By his 3rd  year of life, he suffered  a further complication of his condition with chronic pancreatitis and became hospitalised for one year to keep him safe. During his admission, we encountered many Health Care Professionals (HCPs). These were made up of medical staff functioning in different capacities and across various disciplines within the hospital.. While they all had the sole purpose of delivering excellent healthcare to our son, it was hard to get them to understand the care he needed because his level of development impaired his ability to express these needs appropriately. As his mother, I was also his advocate. I sprang to his defence like a mother hen every time his needs were missed. It was difficult to get the staff to listen. His inability to communicate left him non-verbal. He was also unable to express his emotions appropriately. For example, his expression of pain was not by crying or screaming as characteristically normal for most children. Instead, he became more quiet, withdrawn, less mobile and inactive. This pain response was mainly interpreted as being calm but not in pain. He was also very sensitive to being touched or held. During pain episodes, this touch sensitivity always became worse. His only position of comfort was always one where he could lie curled in a foetal position. He tended to pull in his limbs and stayed in the corner of the bed grinding his teeth. It was heart breaking to see him suffer at a time when he was closest to care. I cried for him every time he pulled away. I cried for the pain he could not express. I wished more than ever that he could do the same. I could not even communicate that to him. It was a helpless situation to be in as a mother. I could not pick him up to cuddle him or comfort him either as he could not tolerate such interactions as a result of being autistic. When the pain team got involved, I was a bit hopeful. However, his scores were low on their charts. The pain charts recorded higher scores for pain based on normal responses. For example screaming, being irritable and displaying active movements especially kicking to show pain was ranked highly. Incidentally, the pain endured by most pancreatitis sufferers I had met where always likened to excruciating labour pains experienced during childbirth. It was no wonder that the HCPs only disagreed with me every time I suggested that he was having yet another bout of the pancreatitis pain cycle. They could not justify the need to give the level of pain relief I was requesting since the pain scores they charted did not support my claim However, given his status as a severely autistic child with learning disabilities it was really not far-fetched. Their lack of experience with this type of autism that could lead to such pain responses in children meant that my son was unintentionally left to suffer. I knew I had to seek help for my son but had no idea how. As time went by my son became very withdrawn. While what the health professionals saw was more of a quiet boy, what I saw was less of my child and more of a chronic patient. To them his quietness was only a confirmation that he was after all unwell. We kept hitting brick walls at every corner trying to get him the help he needed in those first few months when he was admitted. It was while out on a walk along the hospital corridor one day that I made a discovery that changed the course of my son’s care for the better. After one of my routine arguments about the need to administer more pain relief for my son, I needed a change of scenery. That was when I accidentally stumbled across a leaflet hanging casually from a rack on the wall. It revealed the information about the existence of an expert in the hospital called Jim Blair who specialised in supporting families who had children with learning disabilities (LD). He happened to be a consultant and lead nurse in this area. Surprisingly and in the most unceremonious fashion, help finally arrived when I least expected it! Jim was very helpful and approachable. I was able to discuss my concerns easily with him. It was relieving to find someone-a health professional who finally understood my son’s plight. He simply got it! The pain responses that I described to him were anything but alien. In fact he said it was quite common with children who had the level of […]

Hospital life : Getting health care right in hospitals for people with complex health needs and intellectual disability