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5 Reasons Why I'm Late with Scleroderma

The chaotic nature of having a chronic illness leaves much room for error, when attempting to be on time. Before scleroderma, I could leave the house in a moment's notice. Now, I have to start getting ready at least two hours before my scheduled time to leave. My mind still sometimes thinks I can pick up and leave, but my body says otherwise. There are five common reasons why scleroderma causes me to run late.

1. Digestion Issues

Upset stomach, a surprise bowel movement, or fecal incontinence are some regular inconveniences when heading out the door. Many patients with scleroderma suffer from pelvic floor dysfunction, which is the inability to control the muscles that regulate bowel movements. Eating something before leaving the house helps awaken the digestive tract. After relieving oneself, if dealing with incontinence, you have to wait a little longer to clean up any mess that comes out the other end. This is one of the least talked about issues with scleroderma because it is embarrassing. Dealing with these surprise issues contribute to tardiness and extending the time needed to leave the house, especially at a moment’s notice.

2. Pain/Fatigue

Scleroderma is painful. Gnawing aches in the joints are an everyday occurrence, but there are days when the pain is just unbearable. Whether from the torn muscle in my shoulder or an ulcer on my foot, this pain is exhausting and can make the simplest task difficult to complete. Pain can interfere with sleep, and pair that with medications and stress, it makes everything else more daunting, especially leaving the house.

3. Ulcers

Ulcers are slow healing wounds that generally appear on fingers, elbows, and feet. When they heal, the scab loosens up and can easily get caught on clothing or fabric. I cannot count how many times I was getting ready to leave, and the scab rips off the ulcer. It happens while reaching for something, or getting dressed. When this happens, I have to have someone clean the area and bandage it, furthermore delaying my targeted time to leave.

Two frustrating moments while driving

4. Hands

These broken hands are part of the reason why I am late. They move gingerly, to avoid hitting an ulcer or a knuckle. They’re positioned awkwardly so they can’t grasp much. I struggle to grip things tightly and have to be really conscientious while maneuvering my fingers. There are still things I like to do for myself, such as putting on makeup, driving, or eating, but the limited mobility adds a considerable amount of time to each task.

5. Dependence on Others

Caregivers are essential to helping me complete my routine. I need assistance reaching things, opening items, and getting ready. Coordinating the with somebody else’s time can be challenging. A caregiver may be busy at the exact moment you need the help, and this delays the process of getting ready. Clear communication and planning are crucial to being on time. However, being mindful of someone else’s schedule when you’re in a rush can be challenging at times.

The key to punctuality is time management and planning. I let my caregivers know days in advance that I have an appointment, concert, or anything I need help getting ready for. I also try to schedule my appointments on the days I have my aide, because those days I have guaranteed help. It helps to keep a visible calendar on the fridge with everyone’s schedules and appointments, so there’s less room for error. We have to do our best to overcome our obstacles to keep moving forward.

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