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Rachel posing for the camera.
Story

Getting up and on the go with Rachel

At 16 years old, Rachel is undeniably a go-getter, juggling her love of science and math with her passion for music—more so her love for genres like indie pop and alternative.

But, when she’s not listening to her favourite artists, you’ll often find this teenager deep cleaning and reorganizing the rooms in her house, or cooking up a storm in the kitchen.

Rachel—who has a mitochondrial disease and chronic pain—loves keeping her days full. That’s why, it’s no surprise during a recent stay as an inpatient at Holland Bloorview, and she filled her days with appointments and recreational activities.

We got a chance to speak to Rachel about her experience at Holland Bloorview, her time in the Get Up and Go Program, and what helped her mental health.


What brought you and your family to Holland Bloorview?

I came to Holland Bloorview to do the Get Up and Go program to help me manage my chronic pain. I had been struggling with pain for a really long time. I wasn’t attending school regularly, and wasn’t really able to do the things I liked to do.

The things I loved doing such as cooking became things that I would dread because I couldn't do them without ending up in extreme pain. When I would attend school or go out, I would usually need a day to recover after. I was exhausted and in pain all the time and wasn’t enjoying life like I had before. I had heard of the Get Up and Go program before, but didn’t really know what it was. Once I watched the Get Up and Go video, I knew that the program could be life-changing for me. I talked to my doctors about the program and got referred to Holland Bloorview.

Let’s talk about your in-patient experience at Holland Bloorview: what was that experience like and how long were you in the hospital?

I was inpatient at Holland Bloorview for two weeks, then was in the day patient program for the following two weeks. I really enjoyed my inpatient experience. It was really helpful for me to be inpatient for the first two weeks so that I could be fully immersed in the program. It also helped me to form good habits involving things like my sleeping and eating patterns. All of the nurses, service staff, and other staff on the unit were super nice, helpful, and fun to talk to and made my experience really positive.

My favourite part of being inpatient was attending therapeutic recreation in the evenings and making friends on the unit. I also really liked being able to hang out on the unit during my free time. I spent a lot of time in the lounge and used the teen lounge as a quiet space to work on school assignments during my spare time.

How has the pandemic affected your mental health?

The pandemic has greatly impacted all aspects of my life, including my mental health. It has been really hard for me to be stuck at home all the time, especially because it was already difficult for me to get out of the house. Doing school almost exclusively online has been really challenging for me. I really miss the community and social aspect of school and I can start to feel very disconnected online.

What programs/services offered at Holland Bloorview have really helped?

One of the most impactful programs for me was physical therapy, which was a big focus in the Get Up and Go program. In physio, I worked on fixing my posture, getting stronger, building stamina, and learning physical strategies to help manage pain. By the end of the program, I was able to do more of what I like to do and was in significantly less pain. My discharge assessments also showed that my range of motion, strength, and stamina improved significantly. Physio was also one of my favourite activities that I got to do and I always found it really fun. My favourite part of physio was getting to swim in the therapy pool twice a week.

Before entering the Get Up and Go program, I was a bit worried about having to take a step back from school, and was concerned about falling behind in my classes. I was really surprised by the amount of school support I got in the program. I attended Bloorview School Authority (BSA) during my stay, and focused mostly on my physics course. It was really great to be able to have one-on-one lessons with my teacher, and focus on the topics that I needed the most help with. I also really liked how my school time could be more self-directed than in regular school, and I could be as independent or have as much support as I wanted.

At the BSA, we also talked about my study habits and they helped me become more efficient at school and conserve my energy. We also worked with my school to get me the accommodations I needed. I really loved my time at the BSA and finished the program with a lot of valuable study skills, school accommodations, and a much better understanding of the content of my courses that I had been struggling with.

One of the most helpful things I learned in the program was how to properly pace myself throughout the day. My time at Holland Bloorview taught me so much and has allowed me to live a more meaningful and happy life.

How has Holland Bloorview supported your mental health?

My time at Holland Bloorview was really transformative for my mental health, and I felt so much more fulfilled even within my first few days as an inpatient. The program helped me work on improving every aspect of my life, and mental health was a big focus. Having a full schedule with things like physical therapy, occupational therapy, art therapy, music therapy, therapeutic recreation, yoga, swimming, and many other activities, was one of the most helpful things for my mental health. It gave my days structure and gave me things to be excited about every day, which was really important for me. I was also supported with psychology appointments and meetings with a social worker which were really helpful. I had a weekly mindfulness group with a social worker, therapeutic recreation specialist, and my Get Up and Go Partner, which taught us different types of mindfulness practices that we could use as a way to cope with pain in our daily lives.

Some of my favourite parts of my stay at Holland Bloorview were the art and music therapy, therapeutic clowns, and therapeutic recreation programs. I loved the arts programs because they gave me an opportunity to express myself through various artistic forms and allowed me to explore different art mediums and musical instruments. Even though I don’t typically enjoy doing visual art, art therapy became one of my favourite activities and gave me a great opportunity to express myself and create something that I really loved. Art and music therapy made it a lot easier for me to talk about difficult things in my life, and taught me ways to use art and music as coping strategies for pain and to express myself more in the future.

In music therapy, we talked a lot about using music to cope with pain, and made playlists that we could use for coping, which I still find really helpful. The therapeutic clowns are one of my favourite things at Holland Bloorview, and I always look forward to seeing them when I visit. It was so exciting to have them visit me or to see them in the halls, and they really helped me on hard days. The therapeutic clowns at Holland Bloorview are so easy and fun to talk to and brighten my day every time I see them.

I also learned a lot of helpful strategies in occupational therapy (OT). It helped me with my sleep schedule and sleep quality, and helped me to create schedules and a bullet journal that I continue to use to help bring my life more structure. I also loved going to therapeutic recreation (TR) every night when I was inpatient, and our TR groups throughout the program. In evening TR there was always a fun game, activity, craft, or recipe to make and the best part was being able to spend time with other inpatient kids. I made some good friends who were on my unit who were really fun to hang out with and who I still talk to. Our weekly therapeutic recreation groups and OT/TR groups in the program were also one of my favourite things and always had really fun activities that connected to the topic we were focused on.

Pretty much every part of my stay at Holland Bloorview positively impacted my mental health, but these were just some of my favourites. I continue to use a lot of the coping strategies that I was taught and find them really helpful.

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