Outlook

Home again after 5 weeks of rehab. A mountain of post and the SIPPA drinking cups – a cup for all with swallowing issues, newly developed by a Start Up Company – are waiting for me. I find it worth supporting Sippa and also impressive that young people are busy about, that there are people with swallowing issues. At that age I thought about other things.

It’s nice to be home again, sleep in my own bed, drink my own coffee and eat my own food. It is definitely impressive how fast 5 weeks go by. For me the most beautiful thing was the distance to my own mailbox.

In rehab it was all in all nice, you devote yourself entirely to your body. I also preferred to do more, to “run” from one therapy to another, rather than to be bored. That is a kind of distraction for me. Of course it is shattering to observe the decay of one’s own body, but the psychological aspect is worse, at least for me personally. I noticed in rehab that I prefer physiotherapy, or anything with physical activity, much more than psychology, social work or occupational therapy. You can avoid that at home but not in rehab. For me, such hours are like pressing fingers into a wound and digging in it. 

For me it was about retirement, and rehabilitation is the appropriate place for this. You have to come to terms with the fact that it has to be, and it has to be done. But you are shown what you can’t do so well anymore and which topics are difficult. I already knew that I had gotten worse in some things, but I find the amount of mistakes I make in cognitive exercises is frightening. That I can’t even concentrate on two things at the same time. That’s horrible for me, as former department manager. So I am suitable for retirement, says my doctor there. That was already my goal, because alone physically I would hardly manage an hour. You want it and you don’t want it, because retirement at 50 already sucks. I applied for it today… I could puke.

Above all, a year ago I was still at work and my life was running. Now I have the feeling that someone pressed an imaginary pause button and probably nobody and never will press start again. I now have a few years of uncertainty and I have no idea what to fill it with.

Back home it starts again, making appointments, doctors and paperwork – but I don’t say anything, because I know yet that doing nothing gets much harder on me, and I will start thinking about, what makes me feel bad.

Next week I have my appointment because of the BIOHAVEN trial, finally. Although if everything runs optimally, the disease will only be delayed, as it used to be, it never will be.

Leave a Reply

Your email address will not be published. Required fields are marked *