I am not fighting this disease. I am not winning, I am not losing. It is a day by day living – enjoying the happiness, not letting the very hard and difficult times overwhelm me. It is acceptance of what is, not ignoring it nor dwelling in its awfulness.
Managing the pain becomes a habit. Pain need not overwhelm me. Management takes practice, honesty and the ability to say and do what you need to do to avoid unnecessary pain. Sit down, take a nap, use the other chair, sit on the floor etc. After a while it becomes normal to do what is unusual.
So I realise my health is deteriorating fast now. Breathing is hard work most of the time and extremely hard work almost every day at some point. The tremors are increasingly painful and hard to manage. The residual pain in my back makes me gasp most evenings so I focus outside my body. I occupy my mind to distract from the pain. Breathing deeply for around ten minutes helps, as deep as I can that is.
I am planning for my death. One has to. It is part of living. I know that life is not just the time we spend here on the Earth, otherwise I would despair. I also know that I have done my best to make life better for others, both those close to me and many far away from me, whose story I may never know. I feel such grattitude for this. It is what life is for – to ease the burdens of others.