Hey everyone!

I return to the blog after taking a few weeks of hindsight.

It is not easy to decide which orientation to give to this blog. I want to describe the disease in my blogposts without being negative or depressing. But sometimes, the anger that inhabits me rumbles and I feel that it is ready to explode as the lack of evolution and medical research to cure my illness and get me out of the state of survival in which I am forced to wander, is incomprehensible.

But let's see the positive, shall we?!

As we have just closed the chapter of the year 2022, it is time to take stock. My condition continues to evolve positively. I was able to do slightly more demanding walks, with some elevation changes. Even though I am very slow and my condition requires me to rest very frequently, I was able to discover new regions and appreciate magnificent landscapes that were still unknown to me. I managed to go to the sea, I who never leave my dear forests anymore. And I visited a few museums and exhibitions, which I missed a lot.

I noticed a curious thing. I can now walk flat for quite a good distance without too much trouble. Admittedly, it tires me out and I often have to take a nap after a longer than usual walk. But going for a flat ride is something I'm starting to master.

On the other hand, the fact of walking while stopping frequently causes pain attacks in the pericardium. I have no explanation for this phenomenon. I have simply noticed this while visiting museums. Each time, this triggers pain attacks that can last several hours.

It seems that the fact of constantly walking a few steps, then stopping in a standing position to read the indications or comments during the visit to a museum is in question. It seems to be a more exhausting exercise than it looks.

Is it standing still? Or is it the fact that the heartbeat is then irregular? I have no explanation, just a simple personal observation after several attempts.

In fact, I had the same phenomenon while shopping in a supermarket. Alternating walking and stopping while standing does not suit me at all, and it causes pain like heart attacks.

I recently visited the Louvre Museum in Lens, and I took the opportunity to test the folding seats that are available to visitors free of charge. There are usually a few seats here and there in the showrooms, but they are often occupied, and that's not enough for me. I need to sit down when I read what is written next to an artwork or on the walls, for example, because it is particularly exhausting given my condition.

These portable visitor’s seats are relatively light, and when closed, they have such a height that they serve as a cane. You can lean on it. You can quickly unfold them and sit down at any time. For their use, they are comfortable and very practical.

My theory was that by using this folding chair when visiting the museum, I might be able to avoid triggering these big pain attacks. And it worked. I was terribly tired, but not in such a sorry state as the previous times. I was far from the only one using a folding seat and I really felt no discomfort doing so. I had to put my pride aside a bit, but since I got sick, I started not paying attention to other people's eyes. The key is to listen to your body and, above all, to make your health a top priority.

So here is a new type of pain that I will add to my already very long list. If you are interested, you will find it in the update of the blogpost ALL THE PAINS.

I hope that the year 2023 will bring us all positive advances and a significant improvement in our health. Happy New Year!

CELEBRATE EVERY TINY VICTORY.

Pericordially yours,

Vali