I’ve been on holiday now for a couple of days, on the Baltic Sea. At that time I only heard “sea” and said YES. After my diagnosis I am at the Baltic Sea for the first time, that was also on my “Bucket List”. Unfortunately, it has little to do with the holidays I took in the past – I knew that. Nobody can help it that seeing kitesurfers on the water makes me feel sad, because it reminds me of what I can’t do anymore.
I belong – and never have belonged – to the sociable people, chatting, crowd and swaying to the hits have never been my favourite activity, in other words, I have never looked for it the pack, I have always been the one who avoided team sports.
I suspect that my diagnosis was not long enough ago or I don’t have this disease long enough to enjoy it in a relaxed way. I am here on a holiday where Atypical Parkinson’s sufferers, their relatives/carers and volunteer carers – just to take the pressure off the relatives – are present. I find it hard to watch other patients ” fading away “, to see their relatives trying and struggling… I may be the youngest patient here, one of the fitter ones in any case, but it often makes me think, because even though we are all different, I share the same fate. From a nursing point of view, it is not at all about whether I am well-fed and clean, I find it threatening not being able to get up from a wheelchair and not being able to say what I want. On the one hand I am eternally grateful that there are people who do this to themselves, on the other hand it hurts me to see that patients are completely dependent on others, some of them cannot or do not want to veto anything, because they probably want to be as little ballast as possible, want to let their relatives live and enjoy life and do not want to make life difficult for the carers.
So there is not much to see of the sea here, at least not until now, but I have spotted some seagulls! Maybe I don’t want to see the big water. Probably I do… Tomorrow is Heide’s birthday. We think of you Heide!