Hey everyone!

The pain you feel when you have pericarditis is like a heart attack. At least for me, living with pericarditis means putting up with permanent “pseudo” heart attacks, twenty-four hours a day, seven days a week. There is no vacation, no respite. Day and night, the pains accompany me everywhere. It is not only difficult to bear physically, but also morally.

In addition to the pain, there is extreme fatigue. I cannot hold an activity very long, whether it is intellectual or physical. At first it was barely ten minutes. Making a wire transfer to the bank was the activity of the day, a considerable effort, and a success followed by an attack of pain and the need to rest.

To explain and understand how to control this fatigue, some lead to the spoon theory. If you don't know, you can search the internet to see what this chronic disease spoon theory is all about. In summary, it is to say that, each morning, we have a certain number of spoons (representing the energy available for a day) and that each activity will consume one or more spoons, until there is none left. When you have pericarditis or a chronic disease, you only get very few spoons in the morning, and you will have to last a whole day. We must therefore manage these precious spoons. Get up, get ready, cook a meal, eat, do the dishes, etc. And if for a healthy person, the stock seems unlimited, for a sick person, it will be necessary to count, to save, to manage these spoons throughout the day.

Before knowing the spoon theory, I explained my condition by imagining myself as an old battery that discharges very quickly, but then takes a long time to recharge. We could compare this battery to an old smartphone. The energy is not only limited, but in addition, the battery is discharged at a high speed rate. It means that I very quickly find myself flat, exhausted and without strength. The will cannot do anything about it. Fatigue inevitably increases pain and crises. My body has taken over my brain and I can only listen to it. I had to learn to respect and trust him. If he's in pain, he's always right. I need to rest and find a position that relieves my pain. Listening to my body and planning my activities has become a necessity.

So, you will ask, how to manage this defective battery which discharges too quickly and takes all its time to regain some vigor? It can take anywhere from a few hours to a few days, depending on the activity I'm planning. I write the activity in the singular, because I should not count on being able to manage several activities simultaneously.

For example, a visit to a doctor means for me three days of rest before the day of the visit and three days of rest after the visit. You calculate well. A visit to a doctor means a full week: preparation, D-day and recovery. I know that I will put all my energy to make this meeting go well, and so I take the lead by resting three days before. I stick to my strict daily routine. No "long" walk, nothing that would drain my battery beyond the minimum subsistence level.

Another example. For a less intense activity, I will simply calculate the efforts that I make during the day. If I want to take a longer walk than usual in the morning, I will plan to take a long afternoon nap. I need recovery time in my schedule. If I can't sleep, the best way is to lie down while watching videos that calm me down. I recently discovered digital drawing on a tablet. It allows me to remain motionless and virtually effortless for long periods of time, while my mind is busy drawing and playing with colors. It calms me down. When the pains decrease, I can consider what’s next. On the other hand, if they degenerate into crises, it will probably take a night's sleep (or two, or three) to raise the battery level above the zombie threshold.

The battery theory is more my feeling than the spoon theory, but the two are equal and maybe even complementary. I really like the name "Spoonie" (it’s kind of cute, isn’t it?), and it can be a good way to let those around you understand the difficulties you encounter. It is also a beautiful community that supports and encourages each other. On the other hand, the battery theory takes into account the fluctuations in my energy depending on the moment. It covers a period of time that can extend over several days. But, one like the other, these theories make it possible to understand and explain to others, my particular lifestyle. Some people say to me, "But you don't look sick! ". It doesn't necessarily show, because I go out when I'm having a good day. But the preparation and recovery parts are not visible. You must also explain to those around you why you can do such and such an activity one day and not another. Whatever theory you prefer, it will allow you to communicate your state of health and manage your energy level.

ADMIT AND OVERCOME.

I ACCEPT WHEN MY BATTERY IS FLAT. I ACCEPT IT IS TIME TO CHARGE IT.

Pericordially yours,

Vali