A day in a patient’s life

In everyday life, the impact of the disease is sometimes difficult to perceive for our loved ones. They often see the tip of the iceberg: taking treatments, visible symptoms or medical appointments. However, the invisible part, i.e. the energy needed for daily life, the experience or the organisation, is often more complicated to perceive and to understand.   

Learning to live with a limited energy level    

Since my chronic illness has set in, one of the hardest things is to see my energy gauge so low. I still refuse at times to allow this to be my reality.    

I hate having to choose to stay home alone and postpone activities or events because the journey will probably cost me too much energy or because I've already spent too much at work. This is compounded by the fact that my loved ones find it hard to understand, as they don't have to think about their energy levels before saying yes or no.   

While for many, daily life is just an accumulation of tasks, I, living with eczema (among other things), have to think about everything that an activity implies and anticipate it.   

An author, Christine Miserandino, who has a chronic autoimmune disease, has illustrated this. She called it "The Spoon Theory".  

She explains that when we wake up, we have a different number of spoons on different days. The actions we perform everyday cost one or more spoons. These actions can be household chores or leisure activities.   

Anticipating each daily action  

To immerse yourself in my daily life, which may be similar to yours or that of someone close to you, I will describe to you part of my morning. 

As soon as I wake up, the first thing I have to deal with is the weight of the fatigue linked to the restless nights, caused by itching and inflammatory reactions. Let's imagine that we start with 20 spoons, not one more! Each treatment requires special attention.  

Depending on the condition of the skin, the products to be used and the time spent in the shower will be adapted. To add to this, the shower can be more or less painful depending on the wounds.  

You can imagine that washing, rinsing, the choice of care products and its application take at least three spoons. Not to mention the time you have to wait before you can put on your clothes: skincare products stick! And another spoon to get dressed.   

For breakfast, I avoid taking the first thing I can get my hands on to promote a healthy and anti-inflammatory diet, so I prepare snacks for the day, which costs me another 2 spoons. Unfortunately, the local cafeteria or bakeries are rarely adapted to healthy and balanced diets.  

Before leaving, I prepare a real first-aid kit to take with me: care, medication. All situations must be anticipated! Another spoon.  

I haven't even gone to work yet, and I've already consumed eight spoons. I only have 12 left for the rest of the day.  

After work, I'll probably have to organise myself and make choices about what I want to do, whether it's shopping, cooking, going to the pharmacy or seeing a friend.  

You can see that it's essential to think about what each action costs you and to plan your day or week to keep up.  

I believe that one of the differences between a healthy person and a person with a disease is the freedom to live without thinking about how many spoons we have, and simply to act spontaneously.  

Living with the unknown in everyday life  

Every step of the day has its own extra thought process, which allows us to become organisational ninjas. However, it also tends to saturate our mental space, generating more fatigue.  

So, when the day brings a feeling of exhaustion or an attack (eczema, asthma, migraine...): I have no control over it. Some days, the pain appears and compromises my efficiency and organisation. On other days, my face becomes tinged with red spots that make social interactions difficult.  

I plan my days, but I am never sure if I will be able to fulfil my commitments, because I need to keep moving. 

I feel like two separate people: the one who is full of confidence and faith, and the one who carries the weight of the disease. Every morning I am surprised by who will wake up.   

No matter how many strategies I put in place, no matter how much I continue to believe that my illness will stabilise or improve, the facts are there. In the last few years, I have not always been able to control how my day would go.   

I spend hours finding out what could help me, hesitating about the best solutions available to me and panicking about new symptoms.  

I usually have to add unplanned medical appointments to my schedule and accept that what was on the agenda will have to be postponed once again.  

All these things are part of my daily life, and probably yours. Everyone develops their own little techniques, and learns to live with a schedule, the frustration of not being able to do everything you want to do, or the burden of loneliness.  

In these moments, remember that there is someone not far from you, who is also doing their best to get through the day, and that you are not alone <3