Following on from last week’s theme of acceptance I want to explore the concept of hope. I believe that it is possible to reach an acceptance of a long term debilitating illness whilst retaining hope that one day your health and quality of life will improve significantly. Hope and acceptance are not mutually exclusive. In fact acceptance without hope is resignation and resignation can zap your energy even further.
I have been concerned about how people see their chances of recovering from this illness. My quick poll suggests that 56% of sufferers have little faith in significant improvement. It worries me that without this belief people will struggle to find the motivation to manage this illness well, risking more setbacks and a possible downward spiral of worsening symptoms. I have great faith that good illness management can keep symptoms from worsening and even lead to gradual small improvements. I even have experience of these gradual small improvements eventually leading to full recovery. In my case it took 5 years to get there but I was rewarded by 7 years of full health. When I got ill again I was able to apply what I’d learned previously about illness management so my symptoms have stayed pretty mild. Things are a little different though this time and I have new challenges to overcome. But despite my progress being slow I still believe that if I got over this illness once I will get over it again. I believe that anybody (perhaps excepting those with very severe symptoms) who can find the energy and motivation to manage this illness carefully could gradually get better, and that those gradual improvements could, with patience, lead to significant recovery. It’s a long, hard, rocky road, but if we can learn to take it one step at a time and try to enjoy the scenery along the way, we could well reach an exciting new destination. The trick is to enjoy the journey whilst not forgetting that there are new destinations to explore.
For me acceptance is about the fact that my life needs to be lived differently for the here and now and the foreseeable future. I don’t accept that my life will always be restricted by these tight boundaries of limited energy, because how could I possibly know that? Each day when I get up I listen to the messages of my body about my energy levels that day, and I focus on making the most of what I can do within those limits, aiming to ensure that some of my energy is focused on benefiting my health. Throughout the day I reassess the impact of my rest and activity on my energy. I am constantly refining my awareness of what I can get away with, what is helpful and when. Without a doubt I have a goal of achieving full health one day in the future. To do so I focus on the short term objectives of giving my body the best possible chance each day. Another goal I have is to learn new ways of finding happiness and fulfilment which don’t threaten my fragile health. If I had no hope for the future I probably wouldn’t spend so much energy on eating fresh healthy food, taking supplements, practising healing meditations, yoga and T’ai chi. I’d probably give in to the temptation of overdoing it more often than I do now and my health would probably suffer as a consequence. Making sure I can make the most out of the here and now is a good motivation but believing I can get better motivates me even more.
So when you hear scary statistics about how serious this condition is don’t let them eat away at your hope. Remember that they are aimed at promoting more medical research. Finding a cure will definitely bring more hope to people and so we definitely need these campaigns. But remember that statistics are about the past. They include the many people who have suffered at the hands of the ignorant and those who didn’t have the opportunity to learn early enough how to manage the condition and prevent it from getting worse. Each one of us who believes that we can get better, who learns to manage this illness well and who little by little achieves improvement to their health can change those statistics and contribute to keeping hope alive.
I’d love to hear your views on this post!
