2023-05-24 08:35:02
The Covid? Far from being a thing of the past for Flavie, it has invaded – and ruined – her whole life for 3 years. It is the long Covid which, according to patients, can take many forms, have many symptoms. Flavie suffers from a severe form of long Covid, to the point that she can no longer work, barely go out. She’s been in “survival” mode for the past 3 years. She was kind enough to welcome us to tell us about her daily life. We thank her for her trust.
The text below is the transcript of the video associated with this article.
Flavie, can you tell us about your daily life?
My name is Flavie, I am 43 years old and I have been suffering from a long Covid for three years. I do, I’m a mom at the very least. All my energy goes into taking care of my children and going to medical appointments. I rarely go out, in a wheelchair because I can’t walk. I have a very very low autonomy in walking. And then the outside tires me a lot. The noise, the bustle. I still have a lot of symptoms so I have headaches, chest pain, shortness of breath, body aches, muscle aches, severe muscle weakness which means that sometimes I can barely raise my arms to look for something in a cupboard in the air. I have tremors, digestive problems, with pain, food intolerances.
During the same day, often in the morning, I am very bad and I start to get better. That’s why I told you to come at 4:00. This is when I start to feel better.
You suffer in particular from MPE (post-exertion malaise). What is it about ?
I find that the word crash is still quite telling. That’s really what it feels like it can appear after a little effort. For some it’ll be taking a shower, for others it’ll be walking five minutes too long. where after the fact, so a few hours later or the next day, even the day after, we can have a physical dejection, a very very very impressive collapse with an exacerbation of all our symptoms, but in a totally exaggerated way compared to the effort provided. And it can last for days, even weeks, even months.
Feelings of vagal discomfort, actually, or like I’m going to pass out. But with pains, very strong headaches, pressure in the head, tremors, even convulsions. So it happened to me, I was in the kitchen cooking dinner, I had my little girl next to me and all of a sudden, shaking, convulsing, I fell to the floor and I was convulsing, but completely uncontrollable. Difficulty breathing, dizziness, screaming tinnitus and not necessarily unconscious, but I hear, I heard what was happening, but I could not react to it.
“MPEs too little known to caregivers”
Palpitations… When I say the heart falls, it can also go up and down. It is heart arrhythmia and very very unpleasant sensation in the body. An exhaustion. And that, I had. I still have it after three years and it can still last several weeks. Where I can’t do anything, not even read. And that is unknown to caregivers and it is very important that we talk about it because it aggravates a lot of long Covid who are prescribed rehabilitation. For some, it can help them, those who are less affected. But for others, and I know a lot of them, it makes us worse and it leads to a chronicization of this disease. So these post-effort discomforts are caused after the fact. So at the time, caregivers do not necessarily see because we are often able to make the effort and we want to get better. So we try and we are generally good students.
It is very important that we talk about these post-effort discomforts, because it aggravates a lot of long Covids who are prescribed rehabilitation. For some, it can help them, those who are less affected. But for others, and I know a lot of them, it makes us worse and it leads to a chronicization of this disease.
What are the repercussions on your family and social life?
The family is also children who suffer from not having a mother who is present at a choir, at a school party, who cannot take them out. When my husband is away, I am stuck at home. So four children in an apartment, things can go wrong quickly. So it’s very heavy for them too.
They knew me very dynamic and they don’t recognize me. And then precisely, I don’t know what I was going to say, but it reminds me that I forget a lot of things and suddenly they don’t trust me too much. Even in family, friendly, extended relationships: we really need support and not everyone understands it. And it’s painful.
Can you still make a meal for your children?
I can’t do it anymore and it takes too much effort. Both physical because we move in all directions. Even sitting down, I have to get up to grab things in the air or turn around. And it also requires a cognitive effort because you have to be aware of several things at the same time. And so both at the same time, I can’t do it. And right now, I’m really unable to plan a meal. So it’s very complicated.
What are your current treatments?
In terms of care, it is very limited. We have no treatment so we are all looking for what could do us good. So we’ve all tried lots and lots of things. I have three antihistamines, drugs for cognitive decline, dozens of dietary supplements. If I have a drug that is given in myasthenia gravis, which is a serious disease of total muscle loss. So it’s still quite limited compared to the extent of the damage.
I am under oxygen at home, so 4 to 5 hours a day it helps me a little bit. But hey, it gives a little bit of energy, it also relaxes me, but it doesn’t do much more, for me anyway. These are therapies worth trying. We take breaks, we resume, we don’t know, the doctors don’t know, everyone is lost. So that is what is also very difficult. Beyond the handicap, it is that it is a new disease. Doctors don’t have an answer, they search, at best they seek because some do not seek. Sometimes we are not listened to. We can be quite despised. It’s easy to put the psychosomatic label when you can’t find it.
What message do you want to convey?
We are still not heard enough. So that, it makes us angry because I warned from the start, I said to doctors: “I feel that there is something outside me which invades my body. I’m not as usual, I don’t recognize myself”. At first, they didn’t listen to me and then it took a very long time. That, I lost months to be taken care of.
We alerted the deputies, the government. There is a law on the long Covid which was passed in January 2022. It has been over a year. No implementing decree has been passed. We expect recognition of the disability that is induced by this disease on many of us. Some can work, others only part-time, others like me not at all. SO I have been waiting for three years to have recognition in ALD (long-term illness) to at least benefit from a contracted taxi. Just that, anyway it won’t bring me anything else. Because the care we have is not reimbursed for the most part and I am not an employee. So ALD or not, it doesn’t change anything. I am self-employed, I have not had any income for three years.
Some are 20 years old. Some are 10 years old in this condition! who are there studying. We are in fact manufacturing potential long Covids, potential future disabled people. Especially by no longer putting on masks in medical places. It is completely absurd. There is really an effort to raise awareness among the general population as well. So barrier gestures: we must continue.
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