It’s Saturday morning with no parkrun to go to and staying at home due to the Tropical cyclone, I decided it was the day to go upstairs and spend the day with our hosts, Wendy and Darren.

Two sets of 9 steps with a small landing in between for a recovery stage.

Potential problem number 1 was the banister for the first set of 9 steps. In an ideal world this would have been on my right hand side as that is the side with the stronger arm, however, this is far from an ideal world, so it was on the left hand side.  Therefore I had to line up parallel to the banister. As it so happened this turned out much better as it meant I placed my stronger right leg on the next step first and then by pulling myself up with my right arm, my left leg automatically became level with the step, a quick slide on to the step and I was balanced again.  1 down and 8 to go! Although very slow, I managed the first 9 steps. 

A quick (by my standards) shimmy across the landing and a look up the second set of 9 steps before I started the next ascent.  This time the banister was on my right which meant I needed to “swing” my left leg up each step. By step seven I ran out of “grabbable” banister, however, it was the final step that proved to be the most difficult. Hilary supported me on my left side whilst I lifted my right leg up. This didn’t go to plan so I needed Darren to also help support me until I was safely up the final step, where I sat in a chair to recover.

After a period of time I switched to my powerchair and was able to relax and spend several hours “upstairs”

Which leads us to the descent. I have learnt that bottom shuffling is the best way down stairs for me, however, that still left three key issues to sort out –

1 – Getting from chair on to the floor in the first case
2 – Transitioning across the landing
3 – Getting from bottom set of stairs back into chair

After a lot of thought, I decided the best solution was for Darren and Hilary to hold on to me whilst I stood up, Wendy then moved the powerchair away and finally I was lowered to the floor. A simple and logical solution to the issue, however, a very challenging mental scenario for me to accept. 

I then bumped my way down the first set of steps.  Pulled myself up to a standing position using the “Hilary/Rollator” method (Hilary sits on the rollator and I use the grab bar to lever myself upright), stepped across the landing and lowered myself to the floor using the wall to overcome issue 2. Bumped my way down to the bottom of the second flight of steps.  My chair was then lined up perpendicular to the stairs and Darren and Hilary lifted me on to it. 

I had bloody well managed it!  

Whilst I am very grateful for all the help people give me and I recognise that they are more than happy to do it, from a personal perspective it is a very hard hitting reality check, that I am and in all likelihood, always will be, dependent on other people to now help me do regular, normal and simple things that this shitty condition has robbed me of the ability to still do.  That is a situation that even after almost 11 years since diagnosis, I am struggling to accept.