Hey everyone!

Every article I write always feels very important to me. I have learned so much about how to manage the disease over the past 3½ years that the urge has grown more and more to bring all of this information together in one place.

To be sick as I have been means to be extremely weak. It’s not just fatigue as some may think. It is truly a state of intense exhaustion, not to mention the incessant pain. I had to learn to manage all this, without too much outside help, as it is true that health professionals are, unfortunately, not at all trained (nor informed) to provide any help to patients with chronic illness and even less to people who have the misfortune of facing pericarditis like mine.

Without blaming them (they are obviously not trained for this), we have to admit that we will have to fend for ourselves!

My hope is that my experience reported on this blog can reach those who need it, because I know the loneliness is immeasurable when faced with the ignorance and denial of medicine. The tests are normal, the professionals tell us. I have never seen this. It does not matter since the blood tests are good, etc. The reasons for being gaslighted are numerous. And the catch is that family and friends follow, since the doctors can't find anything, you have nothing. It must be all in your head. So do some yoga to relax!!! (to give just a few examples of judgments to be faced).

I do yoga! And yes, it relaxes sometimes, but it doesn't heal. This other misunderstanding must be emphasized. No, it's not in the head. Yoga is a mental discipline that I have been practicing for over 25 years. It is an art of living, not a therapy that overcomes the shortcomings and mistakes of current medicine.

But there is one thing that yoga has taught me, and that is to think "out of the box" in an unconventional way and to take care of my health, both mental and physical.

Surrounding yourself with the right people is also essential. And I'm fortunate to have a few friends (very few!) who I can count on and lean on if need be. I cannot thank them enough. While I was particularly weak and in bad shape, at such a point that it was difficult for me to maintain any hope of ever seeing my condition improve, a friend suggested that I establish a daily routine by depending on my abilities at the time, and to stick to it, to hang on to it.

So I started to think about what would do me good and motivate me to get off my couch every day. Which would be most beneficial in improving my health, both physical and mental.

Above all, my diet seemed essential to me. That’s why I put the cooking first. Preparing 3 meals a day when you're alone and sick is a big challenge. This single objective, with its counterpart, the dishes, is already exhausting a good part of my strength. Yet I am convinced that it contributes to my healing. I took a board and highlighted it in front of my couch. And I wrote the words COOKING and DISHES. At each meal, I draw a small vertical line next to the task performed. For these 2 goals, I need 3 bars at the end of the day. I can then feel this joy of the work done. I feel like a winner. Although I realize that for those who are in good health, it seems ridiculous. For me, considering my current state, it is an achievement and every day one more step towards the final victory, the recovery.

I added other goals, all related to my health and recovery:

My daily WALK which I mentioned in a previous article (The Promise).

My vestibular physiotherapy exercises (PHYSIO. EX.) to improve my balance and reduce dizziness. Here too, a goal to be fulfilled every day with constancy.

And the “extras” that I don't necessarily do every day, like YOGA (or meditation), DRAWING and SEWING. A good day will result in a small line next to any of these activities, but no pressure if I can't.

In the evening, I contemplate with satisfaction the little lines on my daily activity board. And in the morning, I erase them to start over and over again the same tasks that I know are essential to my recovery.

This makes me realize the importance of my daily efforts. I feel less like an “unnecessary patient”, an “incapable” or a “failure”. You will understand, the goal is also to silence this little inner voice that constantly seeks to devalue me.

I also note daily in my diary my symptoms, my evolution, the medications and food supplements that I take (and this is constantly evolving), extraordinary activities (visits to doctors, examinations, meeting with a friend or family, etc.) so that it gives me a timeline and benchmarks. Otherwise my life seems frozen in immobility and I feel useless. I also forget a lot of things because of the brain fog.

Another advantage of these notes in my diary is that I can refer to them to see my progress. I usually go 2 or 3 months backward because over a few weeks, the change is not obvious. You usually have to go back further. It gives me courage to see that it is certainly slow, but my evolution is positive. I will make it!

I think that as a bonus, this little strategy allows me to fight the medical gaslighting that I am constantly subject to on the part of doctors, medical staff, and relatives and less loved ones. The ignorance is such that the chronically ill will still have to fight against this form of sabotage. But that would deserve an entire article ...

Every day taking notes in a diary and / or on a board allows me to make my experience real so as not to doubt the reality of my experience and my illness in the event of gaslighting.

Here are my few tips to motivate yourself on a daily basis. The people who support me are very important, but I cannot rely on them alone. I also need to find my own resources to keep moving forward and not fall into a spiral of dark thoughts and anxiety.

And if you too worked out a daily routine, what would it be?

YOU ARE ENOUGH.

Pericordially yours,

Vali