In a recent blog ‘The Elephant in the Room’, I commented on the fact that when we are out together, people often ask my husband how I am, rather than ask me. A very astute observation by my husband was that ‘I don’t mind being asked about you, but I am not always sure I say what you would want me to’.
We’ve been together nearly 30 years. No-one knows me better, so surely he has some idea about what I would want him to say?
So, I got to thinking, maybe just occasionally, he doesn’t listen to me, maybe he doesn’t ever listen to me! Maybe I don’t tell him or maybe I don’t explain myself very well. Maybe Parkinson’s is just difficult for anyone not living with it to truly understand. Maybe it’s inevitable that his version will be different than mine as he’s seeing it from a different perspective. Maybe as a doctor he finds it all too easy to slip into a medical role discussing my symptoms with friends as though he were at work discussing a patient with colleagues.
Any of these might explain the difference in our respective responses and I suspect there may be an element of truth in each of them. However, another, more likely explanation is the complex and variable nature of Parkinson’s, means that symptoms differ day to day. No two days are ever the same and even if they were, how I feel about them changes day to day. Some days I want to talk about it, some days I don’t. Some days I give into my symptoms and take it easy and some days, I carry on regardless. Some days I can laugh at myself, other days I get frustrated. Some days I have boundless energy, some days I have hardly any. Some days I can manage after three hours sleep, some days I can’t keep my eyes open. There is no way of predicting, no way of knowing. This is part of the challenge of living with Parkinson’s and undoubtedly part of the challenge of living with me.
So, to be fair, no matter how hard he might try, my husband really does find himself in an impossible situation. If Parkinson’s is so unpredictable that I never know how I will feel or what I would say, he certainly hasn’t got any hope of getting it right!