Time Management
Support Worker assisting me with my shower routine
For anyone's life, time management is very important. For someone with a disability, it is even more critical.
For your average person, getting up in the morning, having a shower and getting dressed can be a 15 minute exercise. For someone like me, this can take upwards of 2 hours. When I first started getting support workers to come to my home to assist me, it was a 1.5 hour shift, just to have a shower. This included using a hoist to transfer me from my power wheelchair to my shower chair, my shower chair to my bed to get me dressed, and back again into my power wheelchair. For somebody with experience, this would take the whole hour and a half, however, as I get older, I need more & more support hours just to do the day-to-day. Over the years, my skin has deteriorated from sitting in my chair for the majority of the day, and recent complications with the seating in my wheelchair. This has gradually been causing pressure sores, itchiness, dry skin, ingrown hairs leading to pimples, to then sometimes lead to boils. Back in August 2023, I requested new seating through the NDIS for my power chair due to the foam degrading in my seat pad, causing discomfort and pain, progressively worsening each day. (To give you an idea of why I rely on the NDIS for this equipment, a new custom fit cushion for my power wheelchair was quoted at approximately $8,000. This request was approved, pending a prescription from an Allied Health worker. Despite the protocol being followed, lots of begging, and even going as high as Minister Bill Shorten, the new cushion still took 8 months to arrive and be fitted correctly).
Around the same period, my team discovered some spots and sores popping up on my bottom, hips and legs, which seemed to be worsening very rapidly. These sores were worsening to the point that I had to be hospitalised, due to not knowing what to do to treat them and get them under control. We (myself, my Mum and my main Support Worker, Lucy), along with advice from my dermatologist, decided that every day, after my shower, my Support Worker on shift needed to do a diligent check over my body, to keep on top of these new skin concerns. Even though everyone in Team Ethan has done an excellent job of monitoring & treating these issues, this has meant I have required more support hours, just to complete the shower process.
This has forced me to limit my time out and about in the community, and increased my time in bed throughout the day, rather than enjoying life around my family home. My body has gotten much more stiff, especially my legs and hips, due to the lack of seating support and the pain this has caused. Keith, who does my exercises with me, comes over for 4 sessions a week, however, due to my body being in more pain over the last few months, I have needed more exercises to relieve this pain & discomfort, subsequently, requiring more support hours throughout the week and weekend. For someone who has always preffered an afternoon shower, I now have to do my shower routine as early as possible in the day to ensure ample time to complete these extra tasks, and so my team can still go home at a reasonable time.
My body aside, the impact that this has had on my mental health is another story. Every time I sat in my power chair for a longer period, I was in pain. This caused me immense frustration, anger, and sadness, not just on me, but on my Mum as well.
Throughout this period my main support worker, Lucy, has seen, first-hand, the impact this has had on me. “Ethan’s seating issues have had an extreme impact on his mental health. I have been working with Ethan for over two years now and he has always been such a bright and positive person. I have seen this issue now almost break him completely and really knock his confidence, it’s been really sad to see. This has been so hard because there is not a lot that support workers can do for Ethan other than the extra skin checks and treating skin issues as they come. We can’t help with the pain he gets from sitting in his chair for long periods of time. It has changed Ethan’s life in terms of the extra hours needed to do usual routines, meaning the support shifts have gone longer (I don’t mind because I like hanging out with Ethan & Maureen anyway), but it’s also been months since we have done our usual outings to Henley Beach, Glenelg, Adelaide Central Market etc, because of the extra time these basic routines now take. I’ve seen the anxiety that leaving the house has caused Ethan because of the issues with his seating and the pain this causes him, on top of other issues with his Uridomes (see blog ‘I Need to WEE!’) and the fear of how long a support shift will be to be able to get out and about, on top of the usual routines taking longer. This anxiety is enough for him to not want to leave the house as he usually would.”
People within the community don’t seem to understand the time and patience I need just to get somewhere on time. We do the same processes, but every day is different, depending on my skin, stiffness, and experience of the support worker on shift. This makes it extremely hard to plan day trips, appointments, and even to go out to a restaurant or cafe, especially at a moment's notice. I am a very punctual person, but I can never guarantee that I can get to a certain place on time.
It is now May 2024, and I have just received my new seating. Due to the length of time taken to receive the new seating, these concerns haven’t gone away, and I will likely have to continue to deal with these problems for the rest of my life. As much as this is tough, I know I’ve got to keep a positive attitude, have a good sense of humour, and always appreciate the amount of hours that my team puts in to make sure that I am clean, healthy and given the same opportunities to thrive.
Cheers, Ethan.