Chronic Fatigue Syndrome: do just the right thing (and sometimes not even that)

“Until I got there, my life was normal, functioning like any other person. Until you begin to realize that you can no longer do more than is necessary. ” A day before seeing us I called her on the phone. It was just after 10 in the morning. His voice sounded nice and grateful, but somewhat shabby. “I woke up with a headache, do you mind calling me in an hour and a half or so? By then I hope to have recovered a little. ”

In our appointment appears radiant and happy. It moves with agility. Climb a flight of stairs firmly. His voice is determined and alive.

-How are you?

“I’m fine, it’s not a little,” he says while laughing. I have booked for today. Yesterday I was not fine and that is why I did not go in the afternoon to an exhibition to which they had invited me. I wanted to book. We recommend doing one thing a day, this interview and nothing else.

Paloma Sanz is 55 years old and Chronic Fatigue Syndrome (CFS) . He lived until he was 22 in Barcelona and then moved to Madrid, where he lives since then. “I have my father and two sisters,” but none lives in Madrid.

Chronic Fatigue Syndrome or stress intolerance

“I recently heard a definition that I liked a lot: Chronic Fatigue Syndrome is intolerance to effort. They are not my words, they are those of a doctor. We cannot do many things because our state of health worsens. For me it is an effort to walk from here to 100 meters and not for you ”.

Feder explains that Chronic Fatigue Syndrome “is characterized by extremely intense chronic fatigue of unknown cause. It is not a rare disease. The prevalence is estimated between 0.4% and 1%. Chronic Fatigue Syndrome is more common in women than in men, with a ratio of four to one. ” According to the Association of People Affected by Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (MS) and by the Multiple Chemical Sensitivity Syndrome (SQM) of the Community of Madrid , “Chronic Fatigue Syndrome reduces the activity of the person between 50% and 80% of what I did before getting sick. Approximately 25% of patients have a very severe form of the disease. ”

“This has no treatment because the origin is unknown, at least I think that is why,” Paloma explains.

Physical fatigue in Chronic Fatigue Syndrome

“You feel tired as before with the difference that you cannot. And when you can’t, I can’t move anymore. The challenge is to find what activity I do that does not take me to the limit point because from then on it is better that you do nothing more because sooner or later you will have a crisis. Now I am learning to live like this, measuring what I do. A year ago I had a crisis that I have not raised my head. Until then I was in plan: ‘Go ahead, pull and come …’. And every two for three boom! They gave me several crises a year. ”  

“I am afraid of everything that is early in the morning. Mornings cost me more. I don’t rest while I sleep. Why? I’d like to know that already. They say it has to do with Chronic Fatigue Syndrome. ” He had warned me that we couldn’t meet before 12 in the morning. “I have to wake up three hours before I have to leave home. Today I set the alarm at eight o’clock, but until nine o’clock I could not get up. ” Our appointment was at 12 in the premises of the Association of People Affected by Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (MS) and by the Multiple Chemical Sensitivity Syndrome (SQM) of the Community of Madrid, association of which It is part and living very close.

“I have to take a shower sitting – he installed a seat in the shower tray – and, if I have a crisis, if there is someone, the better. I have fallen three times already in the shower, so it does not offer many guarantees for me. But I still haven’t gotten a shower, ”he says with a funny laugh and a gesture with the arms of less bad! Paloma wants to talk and does it without stopping. His eyes are vivacious and he laughs frequently. Today Paloma is pure energy, I ask her several times if she is tired of everything she is talking about, but no, she is well. So good that he offers to take the photos in the street, but I propose that we do them as he is, sitting, without moving from the place where we have been chatting for hours, to avoid unnecessary walks. Accept the grateful proposal, “it is much better, yes.”

Paloma Sanz and fatigue caused by Chronic Fatigue Syndrome
Paloma is learning to live by measuring everything she does.

Mental fatigue in Chronic Fatigue Syndrome

Tiredness in Chronic Fatigue Syndrome is physical and mental. “Today I am very well, what a joy! Because also when the head does not accompany you … You begin to notice dullness. Hearing you talk … I don’t understand you anymore, answer you, complicated. It is confusion, disorganization. Notes general confusion, instability, such as saturation, ugh. And that can happen to me in a conversation, reading a book. Yesterday when I gave you directions on the phone on how to get here: ‘You leave the subway on Navarra Street …’ and you don’t know how to explain more, give more information, although you know them. ‘Pussy, Pigeon,’ I thought. ” There are times when you can’t even remember your phone. Today he came with his email address written on a piece of paper in case he asked for it and was not able to tell me.

Paloma has read the story of Claudia in Major Minorities. “The truth is that I have noticed mental fatigue. It has cost me quite a lot to read it because when I want to read something, I want to find out everything. ” For this reason the text of his story will be shorter than usual.

To avoid that mental fatigue, that saturation, “I have become methodical because it helps me. I didn’t want automatisms before, look what changes the story. Now I try to leave everything ready. Never before, ”he says laughing. “For example, the clothes I am going to wear the next day. I used to be: ‘today how I feel, what I want to wear’, and not anymore ”. Since mornings are the worst moment of the day, there are times when you get up confused and don’t know what to do first: shower, have breakfast or whatever. “Since I’m better in the afternoon, I try to take a shower at night. And so in the morning you have already done that, you know? ”

Diagnosis of Chronic Fatigue Syndrome

“When even I didn’t know what was happening to me, I said: ‘Oh, I’m very tired. And me too, ‘they told me. Then I could not reason and say: ‘Yes, but you rest and recover, I do not.’ Now I know everything more, I know myself and I can give a better answer. ”

Paloma is an employment technician. “I work at the Madrid Employment Agency”. When he started with the symptoms, he was alarmed that his daily routine was limited to: “Prepare to go to work, work and return home. After eating you can’t move anymore. And in the afternoon what you did before … and you see that not anymore. The first fight with myself was to tell me: ‘you are a vague, how can you not’. I laugh now, but I’ve had a really bad time. ”

“It all started in 2011. I bought and then I no longer had the strength to make food. And zero organizational capacity. I was active before, took advantage of all the hours of the day. Now forget it. I danced, hiking, taichí, training courses, languages, astrology, cooking. I spent the whole day away from home many times. ”

His life had changed so much that he went to the doctor, starting a pilgrimage that lasted for years. “The doctors did not know what to do with me. I was diagnosed in 2017 by exclusion and in 2018 by analytics ”.

When an endocrine told him that he had all the looks – everything looks, not an official diagnosis – that his thing was Chronic Fatigue Syndrome, Paloma sought information and turned to the Madrid association because he had no idea what they were talking about . “In the association they gave me – among other things – psychological support, I was screwed. I didn’t get to depression, but jodidilla. ” Since then “I come to collaborate when I can.”

Environment Response

“I used to be ‘where there is a party, where there is jarana’, always predisposed. Now I take the bus, I’m going to see my friend, who lives four stops from my house, and at half now I say: ‘Come on, I can’t go anymore’, and I’m leaving. I was a very social person and that comes down to that today you have almost no one. At first I blamed people, ‘Joe! They don’t want to be with me, they just want me to mess up,’ he thought. Until recently I realized that myself, when I was in that maelstrom that is life, I did not know everything that was not in the rhythm that you carry ”.

Her perception about people and about herself changed one day that she went to a doctor’s office. He arrived exhausted and as soon as he arrived he found some stairs. “That day was pretty bad,” but he had no choice but to try to climb the stairs. Then a girl arrived and asked if she was well, if she needed help. Paloma was physically and mentally exhausted, so she couldn’t explain anything. He barely spoke to him to say he was fine. But still that girl stayed with her and stood behind while climbing to prevent her from falling. “He saw me very badly and stayed there. There I realized that rarely I had stopped to see if something happened to someone. In the social whirlwind we live how complicated it is. Now I thank who wants to be with me. And I have people, not many, but I have people. I believe that society does not see me because I am not aware that I am wrong, when I am wrong I cannot leave home. Only who loves me and the portal girl see me. ”

Now Paloma is down, she is the second of her life and the longest. The first shortened her to join before working and it was a bad idea, “I relapsed”. He is awaiting the medical court to obtain work disability and has an appeal because he was denied assistance to the agency.

Paloma spent years from doctor to doctor until he was diagnosed.

Loneliness and learn to ask for help

“I live alone in a small house. It is training to ask for help. Suddenly an autonomous person who has done everything herself … and above ask for help for something as basic as be with me because right now I do not stand, ”he says laughing. “I have a friend, Carmen, who sometimes helps me with shopping and encourages me to go to the movies, to the theater. But I miss having more personal resources so that one is not overloaded, because Carmen is 70 years old. ”

So “I need someone. I need a person, ”he says with a smile,“ that if he is not permanently, be with me for a long time, to make my life easier. That it is not necessary to reach limits for not being able to attend to things such as shopping, food, medical appointments, my bank account, that I do not visit it only when I am in full power because if not, I do not find out, ”he says With a laugh.

“I don’t care what people think of me, what worries me is that I need a seat and not have it and be so lazy that I can’t even speak to ask for it. A few months ago I bought a folding stool, which weighs very little, to always carry with me because when I look for a chair that I need and can’t find it, it distresses me. ”

The crises I talked about before “often give me and I think the cause is because I am alone and I have to do everything myself. That is why I would like to go to live with my family – but I will not be able to leave Madrid until I get a job disability – because I do not assume everything by myself, which I cannot do with everything. Because the challenge is to have less crisis. In my case in a crisis I am running out of strength, I feel that my legs can’t stand my body, you can’t even speak. I want to avoid them always and I measure myself a lot. ”

Before and after Chronic Fatigue Syndrome

“If I’m like today, I prepare the food. When I’m better, I prepare several things to keep them frozen and ready for the days I can’t cook. ” Paloma spends most of his time at home, although “I am not permanently sitting if I am not intuiting a crisis or after one. If I sense a crisis, I better sit as long as possible ”.

“I always have the radio on. I always have a notebook and a pen – which has been brought to you today and you have them on the table while we talk – because if I hear something that interests me and I’m not well, I write it down and look for it later when it’s better. ”

“Chronic Fatigue Syndrome totally affects my life,” he says laughing. “It has turned it upside down. From being very active to being almost passive. I have concern for knowledge in general, but many of the things I liked to do, I can no longer do almost none. Because I can even read, but little time. My way of thinking has had to change, I don’t think how I thought before. We have a print that has to be done, must be done, must be done, ”he says with a smile. “If I don’t do something, it’s as if it didn’t exist.” Paloma is changing the “I have to do” to “I’m going to do or I’ll see if I can do,” he explains with a laugh.

In addition to what he can and cannot do, Paloma faces this challenge: “How do I consider my life now?”

Leave a Reply

Your email address will not be published. Required fields are marked *