What’s Next?

Is it a question I should allow myself to ask? Well ideally no – it is far better to stay focused on the present and to focus on the positive things I undoubtedly possess but I have to be honest and admit that my recent brush with acute pain has left me fearful about whatever the next step is.

I see and feel the gradual creep of PSP – it is hard to turn in bed, people bit by bit hear me less well and I am growing more reliant on my carer.

If this is the relatively mild stage then what awaits me as it gets really tough – a feeding tube, pneumonia from reflux, cognition and communication black outs, pain on a continued basis.

I know from so many case studies and from the transition I myself am going through that this is a journey of months and single digit years and not longer so the changes by definition are as the name suggests ‘Progressive’, cumulative and with very limited ‘gaps’ in between.

I of course pray it isn’t so but it happens to PSP patients the world over, each in a different order and form, but it happens.

So, how do I prepare mentally for this reality…the change is 99.9% going to come in the next days, weeks, months…how do I prepare? Can I prepare?

I have done pretty much everything that can be done financially and logically and my family are prepared as much as it is possible to be but what about me? Is there anything I can do?

I don’t have the answers to this question – of course I am educated about the changes from a logical perspective as I have written about PSP so much but I am hand on heart not ready for the change. I just pray and hope that I will have the strength faith and character to show up and handle it.

I coped with the Pain outbreak and it was probably good practice. I used the breathing techniques I have been taught and I spoke to the right doctors to do what I can to deal with it.

The thing that worries me is that it will gradually be less and less me able to do anything about it – I will be dependant on others to make the decisions and although I trust them implicitly I have always been somewhat of a control freak and I can’t imagine how hard it will be to not have any agency in the decisions.

So, back to the question…What’s Next? I have not got a clue and part of me simply doesn’t want to know. I am not ready for it but I trust in my ability to adapt I hope and in my faith to be strong.

It is very easy for those on the outside to say – don’t think about what comes next or there will be a miracle. It is easier said than done.