A day in a life of an occupational therapist with lupus

17 May 2021
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Melissa Chieza, 23, is an occupational therapist currently working with people with learning disabilities. She takes us through a typical day for her working from home and living with two chronic conditions; lupus and type 1 diabetes.

Starting my day

Normally, my alarm goes off at 7am, I press snooze a few times and I head straight for a shower to help me feel fully alert. I get dressed and have a walk before my breakfast. This is easier said than done some days as it depends on how fatigued I am.

Extreme tiredness that simply does not go away no matter how much you rest is a symptom associated with lupus. It’s an ongoing battle despite remissions.

Thankfully, I am currently working from home. I have got myself acquainted with my dining table which I have converted into a working desk, I am usually ready to work at 9am.

With a cup of tea in-hand I check my calendar, which highlights responsibilities for the day, and check my emails. I jot down things I must remember or set reminders where possible on a notepad I keep next to me. 

Brain fog is an extremely common symptom of lupus, but often misunderstood by people not familiar with chronic illnesses, so little prompt notes help me manage when my brain gets a little “foggy”.

During the pandemic, my clients were shielding and fell into the clinically extremely vulnerable group. This meant they had to shield and stay at home to reduce the risk of contracting the coronavirus. The government highlighted people with learning disabilities had higher death rate from COVID-19.

Living with lupus, taking immunosuppression as well as high doses of steroids, and being of Black ethnicity, meant I was extremely vulnerable too. This meant I had to shield and work from home. I had to change my way of working to protect my clients and myself.

Morning

l had to suspend all face-to-face assessments and home visits. I undertook virtual assessments and asked my clients to participate in activities such as making a meal, so that I would understand how best l can support them to complete their daily living activities.

I have built techniques such as using a whiteboard to help eliminate the barriers of a camera and virtual platform, as people with learning disabilities find face-to-face assessments easier to take part in.

I have found taking medications like hydroxychloroquine before assessments helps with my lupus as the condition increases my sensitivity to light.

Lunchtime

My workload is diverse - I work with clients with a range of mental health conditions. While supporting people as an OT is my passion, it can also trigger stress which is something I am mindful of and hence why it’s important to maintain a healthy mental wellbeing.

I have a half an hour lunch break in which I try and manage my own wellbeing. I grab a bite to eat and go out for a quick walk, making sure I apply use high-factor sunscreen.

I try not to sit in direct sunlight or spend a lot of time in rooms with fluorescent lights. People with lupus experience photosensitivity or unusual sensitivity to sunlight.

Afternoon

My half an hour lunchtime goes by quickly! I join a meeting and then do a few follow up phone calls and begin to document my assessments.

At around 3pm, I usually write reports and plan for a new session with clients who I have been allocated for the rest of the week.

After a lot of typing I sometimes begin to experience joint pain, especially in the small joints of the hands and feet. The pain often moves from joint to joint. In the winter months, I find my joints get puffy or I experience frostbite.

Before finishing up for the day, I make sure I look through any final notes or admin related tasks that require my attention.

I always try to spare ten minutes to complete some reflection of the day to evaluate what has gone well and what has not, and I think about what I would change.

At 5pm, my computer gets turned off and my workstation becomes my dining table all over again. I try to stay active even on a bad day and try relaxation techniques to manage stress.

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