My story

“Sometimes the one who seems too weak is the one who has had to be strong for too long” cit.

I’m Marco, I’m 33 years old.
I thank from the bottom of my heart who allowed me to have this web space, and who gave me the energy and stimuli to take the step of exposing myself, and telling me about myself, albeit with some difficulty and from a situation and a point of view that I did not want to reach, and not at a young age.

I’ll write a little introduction for the people who don’t know me.
I was born and raised in Lombardy, in Valchiavenna, in the mountains, which I loved so much.

At the age of 18 I moved to Pavia, where I studied Psychology, and got my bachelor’s degree. Here I was lucky enough to live for several years in a Salesian boarding school, where I learned to live together and enjoy the beauty of living in 100 people under the same roof, sharing the canteen, stories, studies, outings, reflections, goals, friendships. In the same years I concluded a course of Shiatsu massage operator, with which I began to practice on friends, relatives and acquaintances.

Later I moved to Lugano, Switzerland, to graduate in Physiotherapy, and complete my university studies.

I was guided by the interest and research to understand the functioning of the mind, body, emotions in the human being and the reciprocal interactions between them.

The research was not only academic but also very personal. I experimented on myself both body techniques (pilates, yoga, bioenergetics…) and mental techniques (cognitive-behavioural psychotherapy, NLP, psychodrama, dynamic psychotherapy…) and energetic techniques (Taiji Chuan, Qi gong, shiatsu massage, which is based on the concepts of TCM – traditional Chinese medicine). In the end I experimented and realized how well the techniques that tended to combine body/energy/mental aspects worked on me.

I think about yoga, Osho active meditations (I lived 3 months in the biggest Osho municipality in Europe, the one in Tuscany, in Miasto), taiji, bioenergetics.
My goal was to discover the human potential, the expressive and artistic ways that were in me, to give space for elaboration of family and childhood dynamics, to live a serene life and then to be able to work with people, cooperating together to achieve a common and useful goal: greater personal well-being, or a decrease in malaise, for people injured by trauma, both physical, necessary for rehabilitation, mental, and emotional.

The more I got into the techniques and experimented, the better I got to know myself and others, and the more I wanted to continue this journey.

This was the dream that I cultivated, and that I nurtured with passion…..
Over the years, the disease gradually began to steal one piece at a time, until it took away most of my baggage, and I no longer allowed myself to experience what I was living with the techniques I had acquired.

I started working as a physiotherapist, where we mainly used manual therapies. But the constant physical work made the symptoms of the disease worse, so after a year I had to stop. There were two unsuccessful hip operations with symptoms of constant pain. I tried to keep working, but the results were very bad. Too much pain, I began to hate the work, which brought too much painful stimulation.

So I thought about what to fall back on as I continued with the medical research, the treatment, the operations. I thought about a less physical job that had a primarily relational and mental component.

With a degree in psychology, I could work as an educator. I found a job in a day care center for alcoholism treatment. I started, I got on well and I began to feel that this work could also do for me: I could express myself, collaborate and bring something good to the users.

Unfortunately, even if the work was less physical than physiotherapy and shiatsu massages, it still required a lot of activities: both cleaning, moving materials, preparing meals, etc., and accompanying the users, i.e. mountain trips, trips in minibuses, laboratory activities….. In short, little by little even there the pains were too much, and I could not keep my job. I lost it, and I realized that for my health even that was too much.

In the meantime I continued to do visits, therapies, exercises, pharmacological courses… all with no results. I’m sorry to hear that.

It occurred to me to try working with dogs, which I’ve always loved. In Pavia for two years I had volunteered at the kennel, and it worked. Together with my dog, Chicco, I tried to take a course as a dog educator. Thinking that, even with animals and their curators, I could feel comfortable.

The passion and enthusiasm was there. But I hadn’t calculated a factor: at each session, you have to lean towards the dog, to give him the signals, to put and take off the leash, for reinforcement, for exercises… Same things you have to do at home, to train with the dog… total bending down in a day: several dozen… plus a lot of time walking…

The pains increased, the opium painkillers I took did little to nothing, and after a while I had to give in and realize that it was not a viable route in those conditions.

As I continued to search for cures, I tried to think what I could do and offer, limited to my possibilities. How I could earn my keep. In the full uncertainty of not knowing if I would ever be able to be a physiotherapist, a shiatsu masseur, or work in social/healthcare settings.

I told myself I wouldn’t be in treatment without committing to something. I started offering me bargain-basement reps.
German, English, math…
In the past I had work experience in a restaurant in Ireland, and internship in a hospital in Berlin. Those experiences had brought me a solid linguistic basis, which for basic school levels could be used.

I tried. At first it was just a few hours torn up here and there.
Later the boys and families got along well, and word of mouth began to bear much fruit.

I reached an average of 4 hours of class per day on weekdays, and 7/8 hours per day on weekends. Basically, I had rebuilt a job for myself. Even though it was not my project, my first choice, it allowed me to feel that I was supporting myself and that I had a social role.

Over the years I realized that I was working well in jobs where I was in relationship with people, and together I was building something with them. This work also gave me a lot of time with students, with families, or with adult students, and the relationship we created was part of the job path.

At one point I had to refuse some people, because I was out of room for them. I also thought I’d get bigger, and make a collaboration with someone else.

Unfortunately, my treatment continued unsuccessfully, working hours and lessons increased, but my ability to sit, endure pain, focus on subjects and the relationship with the student became less and less.

I kept on going for a long time, until slowly I realized that in order to have those rhythms, normal for an ordinary person, I had to spend the rest of the hours in bed, with pains in my pelvis and back, irritated, without having energy and the ability to go out with friends, taking care of other things. With constant headaches, which ruined my work with the student, and which accompanied me all day long.

I began to live between classes and bed, and to recover from the hours I had done. But I understood that I wouldn’t have gone on for so long if my condition hadn’t improved. I couldn’t sit and eat anymore. I avoided any journey by car. Cooking was painful and tiring. I could walk less and less…

Pains like nails in my back and hips, and constant headaches were deciding once again what I could and couldn’t do…

With regret I had to start to gradually decrease the hours of work and the students, both students and adults.

Hospitalizations began to become more frequent and longer. (…slowly… )

And over the years, without ever seeing an improvement, but slow deterioration, you lose energy, you lose planning, you lose hobbies, passions, travel, etc.. Not because you don’t like them anymore, but because causing her unsustainable pain…
One begins to have a life and speed very different from those of his peers, friends.

Hard to understand, isn’t it?
I’ve known people who have fortunately had few physical pains in life, not crippling ones. In their eyes I often see amazement and disbelief in front of what I tell them, the pains, that even with the strongest people, become those who choose what you can or cannot do.
The theme is no longer what you want to do, what you need: it is what you can do in that moment, in that day, which often does not coincide with what you need.

Once after hours of static activity I felt the need to do an hour or two of fast walking, physical activity, biking, swimming: I took the time and did them. Period.
Now I constantly feel the need to do lasting activity, aerobics, endorphinics, but I can no longer choose to do what I need, even if the need remains present.

The disease that progresses sucks slowly and relentlessly into a different world from the previous one. And even relationships change, they change.

I had become a different man. I was no longer the Marco who skied, the Marco who travelled, the Marco who cycled, who went to the mountains, who played the drums, who worked in health care, who danced, who did taiji, who could read books and essays, who could concentrate and work….

I became a different man, in a direction that evidently worsened my quality of life, shrunk my world, took away possibilities of expression and passions, drove away friends. On the other hand, as a mockery, it brought you daily companions of the day: headaches, pains and pains in the hips, back, pelvis. A decidedly uneven exchange.

And all this while you’re still in your twenties… realizing that the more time you spend without finding treatment, or working drugs, the more likely it is that they’ll never be found, that maybe you’re destined to stay that way, as long as you live.

And that, you know, you only live life once. And this opportunity that was given to me seems to go in a direction that you wouldn’t want, despite all my energy and resources spent to change it.

Medicine is an inexact science, unfortunately. In the various months in hospital as a patient, and in those as a physiotherapist, you realize this very well.

Experiencing it on yourself, or on a loved one, makes a lot of sense.

CURRENTLY :

I hadn’t thought about writing until a while ago, if not for myself. I hadn’t thought of addressing others. I kept it for myself and for someone close to me. I was doing my best. I did the therapies, the hospital admissions, the operations and I confided that sooner or later it would end. In general, illness and physical pain lead to closure and withdrawal, rather than sharing. So it was for me.

And my social presence in the last 5 years has been almost non-existent. I was waiting for some sun to come back after the storm, which didn’t come. Then I read the story of a boy, with a serious illness, who came to a happy ending, thanks to a post on Facebook, and the help of his contacts and their multiple shares, which allowed him to reach a doctor, who otherwise he would probably never have found. And I was amazed at his power. And I thought that even in my situation we should try with all the means at our disposal.

And this story of mine can be a testimony. In defence and in favour of all those who live and experience situations like mine, or similar. There are many

According to some doctors the diagnosis was made too late, 12 years after the onset of symptoms: I diagnosed it myself, studying physiotherapy. I didn’t have the chance to find a doctor to recognize it before, despite the fact that I always had daily pain and symptoms: SPONDILOENTESOARTRITE PSORIASICA AND IMPINGEMENT FEMOROACETABULAR RIGHT AND LEFT HANDS with associated chronic pain and central sensitization.
I am considered a rare case, as I have not responded positively to any therapy tested so far, to any medication, and the pathology progresses.
Some doctors speculate that mine is a rare form of some disease, which has symptoms very similar to those mentioned above. The fact is that, at the moment, I remain without treatment and care.

Some numbers, which perhaps allow us to better understand the situation:

• 105 number of physicians and medical personnel consulted both in traditional and alternative medicine
• 60 months since I can no longer do the jobs I studied for and have peace in the day
• 204 months since the first symptoms and pains started, worsened over time. The months in which I share the day, without excluding minutes or bonuses, with the physical pain and its consequences in terms of concentration, mood, relationship with family and friends, possibility to work, to travel, to act in the world.
• 6 the total months of hospitalization
• 4 operations carried out without benefits
• 29 types of medication tested to contain pain
• 23 anaesthetic infiltrations proven
• 13 the daily hours I have to sleep so that I can endure the pains in the following 11 waking hours
• 4 changes in work
• Thousands of hours doing physical therapy exercises at home
• Tens and tens of thousands of euros for health care, because you have to pay them, even if they don’t bring improvement
• 2 the degrees taken fighting against the pain and hoping that sooner or later they would leave me in peace.

I am considered a rare case, as I have not responded positively to any therapy tried so far, and to any medication. After years of physiotherapy, osteopathy, chiropractic, shiatsu and numerous other therapies,  I have received 4 operations, but none have brought benefits. The last two led to further injuries, resulting in increased pain and disability. What I feel is the continuous presence of nails pressing in my pelvis and groin and in my back and knee, without pauses.

For 5 years I have had intense pains; constant: nails pressing down on my hips, pelvis and groin, back and one knee. I have been back from 8 weeks of therapy in hospital, which unfortunately did not bring the hoped-for improvements. And now, I could only access experimental therapies, with possible uncertain results. For 48 months, due to a collapse of health and constant pains, I had to leave the  work  and try to reinvent myself 4 times.

Leave the professions for which I had studied and trained. The ones I loved: psychology and physiotherapy. Shiatsu. Community education. Animation and entertainment. The dog sitter and the baby sitter. Cutting down the hours more and more, to 2-3 hours a day. And then having to give up those too, no longer being able to. To be unable to look after my dog anymore. The same one I’ve always loved. To slowly get to have the same lifestyle as a 70-year-old. With the difference that some 70-year-olds do not constantly have pain in sitting, eating, walking, sleeping. Some can travel, move, interact, live.

Worse slowly. From month to month. Without being visible, credible, noticeable and palpable from the outside. But inside, extremely clear, conscious and worrying.

The story, however, began much earlier, when already at the age of 15 I had to leave football matches with friends, the team, training sessions, football mates. Skiing and snowy slopes. Cycling and hiking in the mountains. And all the wonderful sensations connected to these activities in nature, in the company of good friends.

I started to fight in high school sitting with unbearable pains in my pelvis, groin, lumbosacral area. Like nails pressing relentlessly into my pelvis and back. And in the age of high school and college you sit even 8 hours a day…. To have pain at every hour, it gets tiring, to say the least. I was fighting, but the war I was fighting did not see or recognize anyone outside, and it remained a personal, solitary war, and destined with the years to drain my strength, my enthusiasm, my resources.

Anti-inflammatories and painkillers are ineffective after the first few months. Morphine, Fentanyl, Palladone and morphinosimilars are no longer effective. In one of the pain centers where I was hospitalized in Bern for 40 days, they tell me that this is the situation of 30% of the population: opiates and drugs help a lot on acute pain and trauma just happened. If you twist an ankle, if you cut yourself, if you have an operation

To get up in the morning, and feel that the day’s endurance limit is already exceeded… but in theory you still have to live out the remaining hours.
And your friends, your peers, can, and do, work 8 hours, stay focused, play sports, go out and sleep 7/8 hours. This is possible and sufficient for them. Impossible when you’re fighting a war with a disease like this.

Of course I stopped to look around and think. There are many people on this Earth in similar or worse conditions. Who are more limited, who have no access to health care facilities. And who would pay to have my pains, but at least be able to walk. I’m aware of that.

In any case, to clear up misunderstandings, I am not talking about annoyances, as they are often interpreted. I am not talking about pain that is bearable, sometimes present and sometimes not. I am talking about pains that force you, (and if not I would never have allowed it) month after month, to abandon what you love and loved in life. That which gave meaning and enthusiasm. And what has been built with years of study, commitment, passion and experience. The work as a shiatsu physiotherapist and masseur. The work in the psychological field. The work in education in the community. Football. The mountain. Skiing. Travel. Cycling. The bike. Animation in the holiday village. The cabaret. The battery. The Latin American dance evenings. The travel for pleasure with friends, or alone. Using the car. The possibility of reading a book, having a conversation, or watching a movie, without having pains that rumble between pelvis, back and brain and that pollute and destroy even the experiences that should be pleasant. The ones you remember that gave you pleasure. And that you used to have in a natural way. And without the mood, before or after, being inevitably and significantly affected.

True, difficult to understand for those who do not live it, or for those who live it for a few days a year, and then return to “normal”. For a few months, for a few years, you can bear it. We can put up with a lot. But not forever, we have limits.

It’s a very bad quality of life, for the age in question. I have loved and defended life, in many forms. But in some cases my opinion changes. And this experience confirms to me that it is unbearable in the long term.

I’m not the only one. There are many people, including many young people, who feel something similar, and who can confirm it. Whether this story is about me, or about someone else, I find it unfair. And deserves to be changed. To give it this social chance.

There are people who don’t believe a word I say. I’m used to it. I’ve met some. They think maybe I’m looking for attention, and that the role of victim can lift them up. I’m taking you off the hook. I don’t need people questioning what I’m verbalizing. I wouldn’t risk my credibility for so little if I didn’t have to. And not at this level of resonance. Maybe they don’t want to believe what they or their loved ones wouldn’t want to happen.

Some days I leave the house and see some acquaintances. In that small period of time when I interact with the outside world, I try to endure the pain, to converse, to move. And there are people who, seeing me like that and talking to me, can’t understand that I have difficulties, at that moment, that pollute the brain. The reality consists in having pain in different parts of the body while talking, walking, sitting, eating, reading, washing, waiting for the bus, doing any daily activity, the ones left over. Smiling doesn’t mean that you don’t have pain anymore. It means smiling despite feeling pain all the time. For those moments when you can. If you still can. For the rest of the time the need is to lie down as much as possible. Without any sound or light stimuli. And it goes without saying that cultivating relationships by staying in the room is not easy or effective. You may hear me say, “I haven’t seen you around,” because you can be around a lot less and do a lot less. But it’s no longer a choice. It’s a necessity, no longer questionable.

At the moment, several doctors tell me to live with the pain, to accept that I can’t use drugs to help me, to give up my job, my passions. They raise their hands, saying that medicine is unfortunately limited, and that on certain pains today, in 2019, we still do not know what we can do. I remain and I am amazed several times, thinking what man has known and knows how to do in certain fields. 50 years ago we sent three people to the Moon. And they came back. He lives. All three of them. Today, in 2020, man cannot take away the pains of thousands of people who suffer from physical pain and who inevitably deteriorate their psyche and emotions and life in general. That afflict family members, impotent. And friends.

Then, thanks to the story of the boy I mentioned above, I realized that if there is a way that I have not yet tried, perhaps the only one, it is to make my story public, to launch an appeal, and ask for help.

The goal of this site and the post me and some friends put on socials is to move contacts. To make this issue known to doctors and healthcare professionals. Until maybe reaching someone with problems similar to mine or with solutions that I am no longer able to find. Or people who have relevance and possibilities in terms of medical research. Make the best possible use of this tool and see what it can bring.

Secondly, it’s a space where people interested to can follow the development of this story.

I probably won’t be able to answer every person who writes me right away. This is because I find it hard to concentrate and maintain communication, for the same reason I have been telling you so far. But any information, sharing, “like”, research, or greeting from you will be welcome.

THANK YOU for your interest, your patience in reading and your contribution to this cause.