TBI One Love Survivor Inês Fonseca
Hello, My name is Inês and I have 46 years old. I´m portuguese. Live in Oporto.
I worked as a Medical Information Officer for 19 years. Between study, goals and many miles traveled…I experienced various feelings and emotions. From joy, ecstasy and happiness to pain, frustration and anxiety. But this was me. It was in fact this that filled me.
In June 2012 I was working (Monday 11), and after stopping for coffee, I was literally hit by a rearview mirror. That mirror set me on one of the biggest challenges of my life. I had mild Traumatic Brain Injury (TBI).
All of a sudden these 3 letters were brutally heavy in my life. I discovered more about them and about myself than I ever imagined. After four years I divided this "more" one step of my life, curiously in 4 periods:
Post-Accident Period I do not remember the moment of the crash and the report that I make is based on the witnesses: According to count, when being hit with the rearvisor in the left arm my body swung and fell to the right side banging with the head in a wall. The impact caused my body to be thrown to the left side (onto the road), banging my head again with an open wound.And it is from here that I have some memories. I will not describe them in a linear way in time because they are just memory flash with no set time.
I remember hearing voices around me, asking questions, and I remember that I answered at least two.I felt myself physically walking around, and I remember trying to grab something because the feeling was that it was completely in the air spinning and that it was going to fall at any moment. There is a sound, like a "click", that made me take my hands to my throat. I could not breathe and felt something like that squeezing my neck. From now on I do not know what happened. I came to know later that I was immobilized with a vest and that "click" was when, inside the ambulance, they closed the vest on the part of the neck.
The nausea appeared here and there and some mental confusion very punctually.
I remember realizing that they were visiting me, but I was not aware that I was in the emergency room. As well as I have no memory of being transferred from one hospital to another. I know I always had my husband with me because the only memory I have is his voice. When I really became aware of where I was, it was Wednesday at the end of the day. That's when I felt a lot of pain in my head and body. Between Monday morning and Wednesday until the end of the day I do not remember feeling any pain. I just have these loose memories. But I have no memory of pain.
From that day, Wednesday, headaches and widespread pains throughout the body were a constant. I could barely sleep, and my appetite was little or almost none. I already had the information, but I do not remember having any definite thoughts on the subject. The only thing I know is that I really wanted to get out of there. The mental confusion was enormous. My physical condition was bad, I could barely walk.
After 5 days I went home.
The first days at home (from my mother) were spent much sleep. The headaches and body aches were a constant. It hurt so much that I still can not define exactly what today. Despite the awareness of what happened, I was unsure of the future. There were moments (very few) where I felt perfectly normal emotionally and all of a sudden the whole mess was coming back. I lived a mixture of calmness with confusion, of good disposition with irritability. Watching television and reading were difficult tasks.
For one day I had mood swings and brutal behavior.
The articulation of the speech was very confused in my head. Both spoke super fast and ran over words, as I could not verbalize what I had and wanted to say. After a week I decided that I wanted to go to my house. I thought all those symptoms were going to happen right around the corner and that I was perfectly fine. I thought I was going back to my normal routine. The truth is I did not come back.
One big change I felt was that I did not feel like smoking. After 20 years that will disappeared overnight. It was as if he had never smoked.
Doing small household chores, like picking something up from the floor, has become completely impossible. In doing so the dizziness appeared and either fell or had to cling to something. Getting up was also a difficult task. I had to be careful not to get dizzy. Leaving home for a walk was unthinkable. I started doing it with my son, but always on full alert. It was stressful to walk on the street, to hear the cars, the movement around me made me confused and whenever I heard the siren of an ambulance was immobilized. That noise in my head left me completely in a state of "shock." Still, I tried every time I could and even went to the crash site to try to figure out what had happened to the detail. With the whole story told by witnesses who witnessed everything, my feeling that everything was going to pass quickly remained. Until then I had no idea of the gravity of the situation and I still did not have it.
I reinforce that in the first 3 months I really believed that everything was going to be ok.
Time was passing and my state was still. I felt sick: headache, body pain, fatigue, psychological tiredness. My sleep was fickle. I had days that I was afraid of going to sleep. Night was coming and I was afraid to fall asleep and not wake up any more. Other nights I lay in a state of anxiety for fear of waking up with headaches (they appeared and appear almost always at dawn).
I was inconstant in a way never felt by myself or other people. Every day was a mystery. Either I had spikes of energy or I was in bed with aches. I got to go do some kind of physical therapy for muscle aches, but they were no good. Leaving home and going to the physical center was a stress factor. The very way the approach was made, and only massaged with a kind of electrodes, was a stress factor. I was full of pain and often left there waiting for I do not know what. I began to think that in fact I was not an urgent matter. They looked at me and there was no visible sequel (injury), so why hurry? But what is fact is that I was in a hurry. I was in a great hurry to get back to me so I would not have any pain.
The sexual appetite disappeared and I even stopped having a menstrual period.
Excessive peaks of irritability always increasing .... Here, too, out of nowhere. For no apparent reason, in seconds, it would start screaming, and in seconds it would return to normal. It was something I could not control. It was at one of these peaks that I went back to smoking as if I had never left (after two and a half months). I could not read, could not watch television almost any time and being on the computer was almost unthinkable.
When people talked to me, it took some time to get the reasoning in place to give the answer. My speech was not consistent. I felt my thinking very slow. I said something now and after a few minutes I could not remember anything. It was as if he had never said or heard anything. Everything was very confusing for everyone. I looked at myself in the mirror and despite seeing my "picture" as always, the truth is that I did not know me. I felt like the strangest person in the world. I felt like I was not being able to control anything at all and my self-esteem, frustration and anger increased every day.
I came to the point where I often said "I do not act on myself. "When i had the days called "good" and woke up full of energy, i took the opportunity to search for answers. I read everything I got on mild TBI, but the information was very little. I could not get access to anything that gave me a logical explanation in my head of what was happening to me.
When i had "the days of Tbi" the only thing i wanted was to disappear. I even thought I'd rather be dead than feel what I felt. The feeling of impotence and non-control over our lives is a brutal psychological torture.
For 8 months nothing would regress. Everything was new to me. In 41 years i had never been in the low for a long time, much less felt so much at the same time:
•Lack of concentration
• Lack of memorization
• Lack of sexual appetite
• Muscle pain
• Constant fatigue
I felt that I could not "surrender" myself. I have always tried to keep my routine, especially at the timetable level. I looked for alternative help, reiky and acupuncture, which in fact relieved my aches, but after a few days everything returned to the same.
I've been down for 8 months. I lost touch with a lot of people, I left others and at work I felt completely alone. I had never experienced anything like it. Until October it did not drive so, for anything, it depended on hitchhiking. As there were not always, I was on public transport. Suddenly I came to depend on other people, on other things .... On "good" days this was even faced with some good mood. In the days of "TBI" the revolt and anger mixed with the severe headaches and in the body.
During these 8 months, I went to the hospital once to take injectable pain medication: about 2 weeks before Christmas I had a peak of so-called "good days". Almost 10 days without pains led me to think that it was finally okay. I believed in a "magic pass." All the other symptoms held, but being painless led me to forget everything back and to have my normal routine. I was wrong. I spent the 25th of December in the hospital and spent about a week practically at rest.
I had consultations, in the context of an accident at work, every month. And in all the consultations I was duly informed about all these symptoms. One of the phrases that I heard in one of the consultations, and I never forgot it again, was "Inês you must realize that you are note the same person" That day I left the office and thought, "It's all crazy - nothing like that will happen. I just have to be patient. In fact, I had so many trials in my life and had passed, that this would be one more.
It was in one of these consultations that my doctor loaned us a book in English for us to read.
This book described in a very clear way everything that was happening with me to date and everything that was still to come. I did not read it (I could not read almost anything). Read my husband and my mother. It has helped a lot, but days and months to deal with a patient like me does not teach.
At some point I chose not to speak much of what I felt. In fact, I did not speak. I often heard the phrase - "you look great" - and I think even I started to doubt myself. So I preferred, as in several phases of my life, to try to show that I was recovering. This phrase, which we all hear so much from day to day (and even like this praise), has become the worst to hear in my life.
I cried a lot, always alone. Crying around someone was unthinkable. And the phrase "you look good" appeared so many times that he was already ashamed to say "I'm not well."
It was extremely difficult to deal with this roller coaster and I was exhausted. The whole situation was complicated and being at home was stressful. I basically lived with a stranger inside me.
Return to work (February 2013)
I started working with a 40% disability. I knew and was informed that I had to take it easy and gradually return to my daily life. The first reaction I had when I learned I was going to work was "euphoria." At last I was going to be busy, I would go back to my day to day and everything would be back to normal. I had had this hope a few times. But now with his return to work, I was sure he would.
But I was very scared. Afraid to go back to work that actually put me in this situation. After all it was working that everything happened.
I felt pretty tired and driving was a difficult task. I did not have the strength or the stamina to walk again so much time by car. At this point I got to walk in a gym to physically recover from being 8 months off. I was going to the gym anxious and stressed. He wanted immediate results. There I would come home one day or another, but it was the opposite, worse. I became sick after training.
In the first days of work I followed up with colleagues. Meetings with clients made me mentally tired. Before long I could no longer keep up with the conversation. I could not concentrate. Walking in the car and on the street, with all the movement, was confused and the dizziness (although with the medication) appeared soon.
In the second week of work, due to the long absence, and to readapt and update, I went to Lisbon (I went by car and got back by train).
I had a medical appointment at work, with the company's doctor. I realized that finally someone outside my normal circuit understood and understood what I felt, although it was apparently optimal. It was recommended that I do my work tasks more calmly and not have as many meetings as I have with clients. I also was in training. Concentrating on myself was a difficult task. Memorizing was unthinkable.
After the first 2 weeks of work I had:
• More frequent dizziness
• 3 consecutive days of headache
• Almost constant head pressure
• Increased irritability
Another factor that caused me a lot of anxiety was during the work day being questioned by my clients about the accident. I did not want to talk about it, but I knew it was bound to happen. It gave me stress and more anxiety ahead of time and even before things happened.
During the day I had to walk from pharmacy to pharmacy. I had done it for so many years…but this time, it was not morning yet, and I was already tired.
At this stage I was still thinking here and there that everything was going to happen. It was perfectly normal to be difficult, to readapt me .... I noticed a lack of concentration and lack of reflexes in driving. When I tried hard to do everything I did, I could not. Suddenly I feel more frustrated, sadder, more angry, more nervous, just wanted my life back.
My job was being readjusted and I ended up with fewer clients. At the time I reacted very badly. I felt I was passing a certificate of incompetence. In fact I could not keep up with the workload I had, but otherwise I was not accepting it. However, even the employer had some confusion and doubts about how to proceed with an employee who is still with a disability. My fickleness has shattered everyone. The disability attributed was lowering month after month, and in June (2013) was discharged definitively by the insurer.
In June I had another job readjustment and I started working only hospitals. A new project was started, along with some medical specialties and this area was in fact my usual area. However I started to have to do more kms, namely going to Coimbra. I was very aware of my driving limitations (I had to deal with them every day) and during my first trip to Coimbra I had an anxiety attack that culminated in a severe headache. I stopped in a service area, took the medication as I always did in these cases and waited for it to happen, to continue my work day. The second time I went, I was talking to a doctor and suddenly I started to get dizzy and the headaches appeared. The doctor suggested I lie down for a while, I took the medication and waited for him to make the trip back to Porto.
After these two attempts I did not go again. August has come and vacations. I was still exhausted and just wanted to relax and relax. I felt myself collapse. It was on this holiday that I realized and became more aware that:
• Being in the sun and wind caused me what I call "pressure" on the head (they were not the usual pains, but the closest definition is this);
• If I went to places with a lot of people (even if it was on the street) I would be dizzy and tired;
• I realized that having a lot of movement around me made me tired. Suddenly I had the feeling that I could not even think. It was as if my brain stopped;
• Being indoors with lots of people, made me have a seizure of claustrophobia (in this case it was inside a museum). I was beginning to be unable to breathe, and immediately there was an anxiety attack. I just want to get out fast.
In 22 days of vacation, I had 19 with headaches. Everything tired me, everything stressed me and I was afraid to try to do whatever it was. The probability of not being able to do anything, as it was then, was enormous. I realized that, after all, I still could not have a normal routine. I had to stop going to the rhythm I've always been used to. The truth is that I could not.
The end of the holiday is over and after a week of working I entered the emergency room with severe headaches and muscle aches. Even the medication was not working. It was coming out on vacation. In fact I had only been able to really relax for 2 or 3 days. They gave me the injectable medication and I went back home.
All these factors together have led me to stay a week off. I realized clearly that I took myself to the extreme of my limit. The months that followed, until October, were more of the same. The pains appeared 7 to 10 days in a row and disappeared for a few days. I know there were times when the pains were more spaced out and it suddenly seemed like it all came back to the same.
In October, the Labor Court, together with the insurer, gave me a permanent disability of 15%. I understood at the time that this inability had to do with concentration and memorization (cognitive área). But what about the rest? And where was I? I felt completely lost. Another doubt I had was, what these 15% implied in my working life. The answer was clear: "Inês you will have to have a readaptation to your work and, together with your company, to understand what you can and can not do."
Until the end of the year, nothing has changed. Headaches, days in a row start working later, anxiety and a lot of tiredness. A pattern in my headaches was that they always showed up at dawn accompanied by neck and shoulder pains.
Cognitive Rehabilitation (January 2014)
In January 2014 my cognitive rehabilitation consultations began. This rehabilitation consists of doing, through the computer, a series of exercises for concentration and memorization. Each session took 30 minutes and was done at home, if I am not mistaken, 3 times a week (online application with monitoring by the Psychologist).
The first exercise sessions were extremely difficult. After ten minutes my brain stopped thinking and I was so tired that I just wanted to sleep. Every exercise that I was able to do increased the level of difficulty, and I would come back again.
Had sessions every 15 days and I honestly do not remember for how long. Cognitive assessments of the tests were made, and personal evaluation was also done through "conversation" (this was how I saw all this at the beginning and I honestly did not believe in any of it).
I had never had a Psychologist and for me Psychologist was a waste of time.
At first consultations I was almost always furious. They were more questions to me and I felt my "space" to be invaded. I ran away from everything that tired me, and the consultations were getting tired. I was so but so exhausted that the only thing I wanted was some "thing" that would give me back my life ... my "I".
The first homework I ever had was to write every day what I had felt during the day. I had 15 days until the next appointment. As I always liked to write I found the task easy and left confidently.
It was not easy. It was super difficult. In fact I did not feel like doing it. After 2 weeks, and already with some written sheets, I returned to the consultation in a certain proud way, and since I did not believe in any of that, I even thought, "This is not where you're going to help me and I'll show you that."Basically I had an account, like a diary, of my days. And the answer I heard was "This is not what I asked of you - you are reporting what happened as if you were a spectator of your own life and not an integral part of the event." At first I did not realize. But then I realized that I did not know how to describe in a simple way what I felt, whatever the situation: sadness, joy, comfort, fear, shame ....
This analysis made me so much, but so much sense that it was at this moment that I gave myself wholeheartedly to this treatment (it was my first lesson). I had spent almost 2 years looking for answers ... looking for me, and in reality I had not found anything. My days were still unknown. I was already thinking how I was going to be the next day. In fact, I had been anxious for days when night came. The headaches appeared almost always at dawn and as always fear was a constant.
The first few months of consultations were complicated. We always find that we know exactly what we feel, think we own our reason, and are too inflexible about other points of view. And when we live a long time in pain, we do not want to touch it. We worked hard on the accident episode and always had homework to do.
My return to work was almost all treatment. And everything revolved around him.
When I returned to work and went to Lisbon, I heard 2 phrases that marked me a lot:
• "Look, the cripple has returned"
• "We thought that in the month following the accident you would come back and you would always be low month after month"
It was in the consultations that I told this for the first time. And these two sentences caused me immense pain. My physical appearance has not changed, it's true. But my emotional part was less than zero. I had already realized my limitations, but accepting them was difficult. To accept that other people did not understand them was difficult.
It was also through the consultations that I realized that society is not prepared for non-visible disabilities.I realized that after all the word "mental illness", although it is strong word, does not mean that we are crazy (as we were formatted to think). It means the largest part of the time that we lost ourselves and that we could not manage and accept a certain event and / or change.
The lack of concentration in driving, the daily computer work, the headaches and the tasks that required me some more effort, ended up for having interference in my family life. The peaks of irritability to increase, the lack of patience was constant and the fatigue as well.
However, my family experience tells me that if our family members are properly informed about the situation, if they clearly understand what is going on and above all if they are always by our side with a silence that welcomes and convey understanding, the path becomes less painful. And indeed it was.
The book I mentioned earlier, which was borrowed by my doctor, and his constant explanations month after month, helped in an incredible way the family process, which never at any moment collapsed.
Anxiety, frustration, lack of acceptance, fear, panic, lack of concentration, aggression, confusion and a great lack of understanding to accept these facts.
I also did not understand. It's normal. I did not understand why I was angry, I remember asking myself several times, "But how come no one sees how I am?" It's hard for other people to realize why they look at us and apparently we're great, but it's not impossible. The tendency is to begin to carry a "guilty" that is not ours, is normal.
I think that in more than half of the consultations, when leaving, it would be about an hour alone crying. This is a reality that I think should be emphasized. The psychologist, through questions and answers, makes it possible to get to the bottom of our pain and identify it clearly.
In the first year of consultations (from January to December 2014), I noticed some improvements. As I went through cognitive rehabilitation tests I was able to have some more resistance in my understanding and reasoning.
Memory exercises have always been the hardest for me. However work remained an anxiety situation. With the help of the consultations, I had more days a month relatively calm, I learned to rationalize the situations better.
But there were situations that I could not yet control at all:
• Claustrophobic situations (elevators, particularly in hospitals)
• Driving with rain / bad weather triggered me with stress and anxiety
• I was talking to someone and I forgot what I wanted to say
• Drving by car,excessive tiredness and following
Another holiday period has arrived (August 2014). Until then I felt much more comfortable dealing with my day to day, although still with limitations as I have already mentioned.
But if I compared what I was like before I started the consultations and how I was already with the proper follow-up, I realized (I thought) that everything was finally going to its proper place.
I ventured into different family vacations and did many kms, on this 3 week vacation I had 12 days of headaches.
When I returned from vacation, I went to an appointment with my specialist in Neurosurgery. I suppose I should have been quieter and more rested, after all I had been on vacation a few days ago and suddenly I got worse (I thought). The strong and intense pains returned, the mental confusion, irritation, fear and fatigue. I thought I had regressed and I panicked.
The answer I heard was "Ines derailed you were on the line, already feeling comfortable and making a curve derailed. " I fully understood the message, a message I had already heard and never believed, "Ines recovery can take months, years or be for a lifetime." I continued with psychology appointments.
With the help of the psychologist I realized that it was time to try to overcome another fear. To realize that I had to try. I myself wanted to realize how far I could go, and I started to fight myself. I clearly realized that my attempts to drive were really limited to life.
The summer vacation came in August 2015. For the first time I had the so-called "holidays in conditions".
"Vacation in conditions" - It will be reasonable to realize what this means. As I have already mentioned, there are some symptoms of mild TBI such as irritability, fears, low self-esteem, frustration, lack of acceptance, physical pain (head, shoulders, neck), anxiety. I know what this is all about. So let's see: last year in 15 days of vacation were 12 headaches; anxiety installed at various times like simple tunneling on the road, elevators, and a few peaks of irritability.
Reaction a year later in identical situations: I spent the same in tunics, but I closed my eyes and controlled the mind with the breath. Lifts? Resolved: I went upstairs contented and happy. In 15 days of vacation I had 2 headache. Angry? Almost never. I looked and felt things differently, the way she taught me in the consultations and that greatly increased my quality of life!
But when we think we have all the answers, life comes and changes all the questions. In March of this year (2016), after 19 years of profession, almost four years after recovering and learning to overcome the day to day of having no visible disabilities , unemployment knocks at the door.
"The way we perceive things can transform an experience of suffering into an experience of wisdom."
I know that sometimes (many) it gives fear, that appear (almost always) the doubts, I feel that I am at my limit and I can not see a comma in my thought (only an end point).
I know I'm going to have days like this ... The day of the TBI, where it seems that everything I walked there receded.
Yes, I will have days like this.
Yes, I'm going to have great days and not counting I wake up on a day like this.
Yes, this day will pass .... (I believe) And with a comma (not with an end point) I will continue other days to overcome!
It is perfectly normal to admit that we are not well and this is what the vast majority of people do not do. The vast majority of people who experience having mild TBI or other sudden personal / social changes do not say they do not feel well ...
Does not say you're frustrated
Does not say you feel lost
Does not say you have anxiety attacks
Does not say he has not slept in days
It does not say that it can no longer do a certain task
He does not say that he goes on crying for days
Do not say...
For thinking that just around the corner everything will pass
You do not say because you think you're going to do it all by yourself it does not say, because above all, and in the first place, does not accept the situation. I have already been there and I give you an advice: do not let your mind enter a vicious circle. This circle will quickly turn into a spiral and you will live longer in the pain.
I learned and I realize that:
•As best as I am, there will always be people who think everything is simulation
• There will always be people who will doubt
• I learned that the invisible to the eye is the hardest things to show and to prove
• The headaches will always appear here and there and the way I deal with some situations has changed.
• I learned to respect my limitations of concentration and memorization
• I learned that despite my limitations, I should never lower my arms and should at least try to
• I learned that I will have peaks of irritability coming from nowhere, but soon they pass away
• I learned to respect my body
• I have learned that many times the symptoms years in a row are like the Titanic siren warning you that you have to change the way
• I learned that I am not a poor person and my truth is my truth, not the truth of others
• I learned to find my self-love again
• I learned to ask for help
• I have learned that living with a mild TBI, from outside looking in is difficult to understand and from the inside out is difficult to explain
• I learned that when you strive beyond your limits, you release mental and physical reserves that you did not know to have.
• I learned that when you have the opportunity and the courage to talk about your pain, and to ask for help, you come to the conclusion that the sign that says "Return" exists and was right in front of me. I did not see it sooner because I had something to cover it .... Me.
• I learned that after all I can not solve everything myself
• I learned that the psychologist is prepared not only to listen to me, but also to help me learn to welcome my emotions, pleasant and unpleasant. Showing me aspects of myself that I would not be able to discover on my own. We are not good at judging ourselves, although the human being almost always cherishes the illusion that one knows oneself well
• I learned to readapt myself
• I learned to look forward to fear
• I learned that a civil legal process in court takes a long time to be resolved (not yet) and that with non-visible disabilities is a very painful and difficult process. But I also know that when you speak the truth it is impossible to pretend authenticity.
• Every day remains an unknown. I continue to have the good days and "the days of the TBI" with regard to my limitations.
At last I learned that what I thought was going to be resolved quickly became a journey, that my non-visible limitations will accompany me throughout my life and that to accept this I chose the best path - Psychology.
Thank you for reading my story.
Thank you for writing your story. Together we can help other people who pass through it.
Thank you TBI OneLove.
Thank you James for the inspiration!