Advocacy during Rehabilitation – the next phase 

Written by Rebecca Schmidt-Lachlan, Altered Abilities

Initial Beginnings 

Welcome to the next part in my Advocacy series. For those that missed my first blog, I suffered a stroke in my brain stem and was left unable to move anything from the eyes down. To read the full details check out my blog on Advocacy in Hospital.

After moving from the Intensive Care Unit into High Dependency and back onto the Ward, it was time to start looking at ways to progress my current situation. At first, I did not want to accept there was anything different about me and everything was fine. It was not until I tried a ‘tilt table’ which straps you in and brings you to a standing position. As the room whirled around me, I began to suspect things had changed dramatically. I felt as though I was in a bad dream and the arm splint fitted each day to straighten my arm at the elbow was a complete nightmare.  

The medication for anxiety they had placed me on made everything seem like a joke, even if it was a bad one. I laughed or shrugged off the pain endured each day as I didn’t understand what was really happening. At this point I couldn’t really communicate other than crying to indicate that I was in pain. I found this worked to let the nursing staff know how I felt and as I intensified my angst, they responded by removing the splint which was the relief I was seeking. At this point I had to go with anything that worked. 

Once I was able to start using an alphabet chart, the questions around what had happened to me started to flow. I was determined to understand what was happening, most people suffering a stroke didn’t end up like me. Would I be like this for life? Was I dead and this was hell? After hearing the diagnosis of ‘Locked in Syndrome’ my primary thoughts were ‘You don’t know me and what I can do’ followed by ‘I really don’t think so’. I firmly believe this was the driving force in my recovery. 

Moving on to a different Hospital 

I had just started to get used to the daily routine when I was informed of the impending change of a new Hospital. On the one hand I was scared at the thought of new surroundings and the upheaval of my routine. I had just gotten used to this although on the other hand, I was excited to get closer to home and my family. At first, I thought this was another joke to scare me into doing as I was told by the nurses and doctors. I had been challenging at best and felt it all was a game where I had to keep one step ahead each and every day. When I came down the mountain and saw the sea again, I almost couldn’t believe my eyes!! 

Now I was encouraged on a daily basis to participate in Rehabilitation which felt similar to cruelty as everyone gathered to watch my progress. I did not understand the gravity of where I had come from and the amazement of those around me. The stay at this Hospital was a short one as I was to find out. 

Nitty Gritty Rehabilitation

Lastly, I moved over to a specialised Rehabilitation Hospital where I would regain majority of my independence and vocalise my thoughts on how I wanted to drive my Rehabilitation. Not long into my stay an Occupational Therapist approached me and asked if I would like to create a timetable. This would give the staff an indication of my expectations and my commitment level. I set to creating a daily routine of Speech Therapy, Physiotherapy, Occupational Therapy and Diversional Therapy. I left Friday free and my father asked why I hadn’t picked anything to do on that day. I told him it was a rostered day off. I went out on gate leave during the weekends which was full of activity as well as my Rehabilitation…. I needed a break and some down time as well.  

With everyone on the same page and willing to assist me in reaching my goals, we started working on my methods of communication and regaining enough mobility to control the wheelchair they had fitted with a handle for me.  I realised they could offer me all the support I may need but ultimately it was me that had to do the work or nothing would improve. 

Although I was bound by schedule and appointments, I understood now that I needed to improve my speech quickly and relay my thoughts on how the process would evolve to benefit my needs. When I was working on improving a skill and needed more time, I had to let them know this one required a little more effort and may take a while. Other things I picked up quickly and let them know I could try something harder. By keeping the channels open as I went, we were able to work together in achieving my goals for successful outcomes. Ultimately you decide on how much or how little you want to put in and what you want to get out of Rehabilitation. There will be days when you just aren’t up for anything and that is ok!!  

Watch this space for my next instalment on Advocacy 😊 

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