My story: Fibromyalgia and me. please share my story
Who looks at me, does not find anything out of place. Did not go through surgery, hospitalization, no broken leg or something. So, the first reaction of most people is always the same: find that it’s okay with me. After all, if you can not see anything, it did not happen anything serious, which is why it’s all right, is not it? It is I who should stop complaining and thank you. Or, in the words I have heard many times: “Do not you see people dying out there? People starving? Cold? With cancer? You should thank God because it is good. ”
Well, after all, I can even say that I’m fine. I have more health than many. I have many benefits and privileges. I never failed to recognize every grace and blessing that I receive daily with the life I lead. My reality is not perfect, in fact one of the is, but it is much, much, much, much, much better than the many, many people. I never stated or expected otherwise. Despite collecting sick days, I never fail to hold on to the good days. Or the smiles, hugs, and beauties that populate even the bad days.
But who even know me can realize those (many) days when I am not well. Those where the pain comes without respite. Throbs. Itches. Estrala. Burn. Impales made needle. Gives dizziness. Migraines very strong. Indigestion. Twinges. Tiredness (much). Sleep (very well, but always at the wrong times). Irritation. Morning stiffness. Insomnia. Tingling. Cold. Lack of sensitivity. extreme sensitivity. Malaise. Lack of concentration. Anxiety.
The head goes to the cloud (I am literally in a ‘fog’). Depletes. And then comes a horrible feeling, as if I were trapped for days in a very small box, extremely disproportionate to my size, squeezed, listening to a loud music.
It’s exhausting. And I feel it every day. But I always speak to myself: “Come on, be strong.” And, after all, put a smile on your face and go. Therefore, most people can not imagine the pain I’m feeling inside.
Why do it? In part because they do not want (trans) appears. Pain is my problem and not like other people to be worried, to feel sorry, that judge me (and believe a lot), or that may throb.
The Roles canceled. Justified problems “because she is / is sick.” The daily questions – “better?”, “Better?”. I think beautiful care of people come to ask me if I’m better, but I do not know what to say, because the honest answer was always a resounding “no.”
And it’s not morning, I swear. That’s not even better. For fear that people have the impression that I only complain, sometimes even say that I improved a little bit. A little bit. Just to say AGAIN, I STILL, CONTINUOUS evil.
So sometimes I prefer to keep silent about what is happening to me. I confess that there is also another reason for the few words: avoid overdose of “foolproof tips to end your problem.” I tell very little people not to run the risk of hearing 15 miraculous combinations of guesses about the doctors who should go, exams I need to do or teas that should take. In addition, of course, the conclusion that all this is only happening to me because I’m lazy.
Lazy! Not that I’m REALLY interested in how others take care of my life and believe me, but the point is that people do not even know about all that has happened. The number of doctors, examinations, tests, side effects, fears, ready wrong aid and procedures that I’ve been, the sustained walking, people squeezing me where it hurts, struggles to accomplish tasks when barely stand on my feet, the Negligence the destratos, hidden cries or even visible well. Each with his cross, is not it?
Listen THOUSAND TIMES a list of guesses is WELL boring. Notice, never told antirheumatic that if he ate more broccoli suddenly the body would not attack himself with an autoimmune disease, they said ?! Nonjudgmental, live with pain is a challenge. When then start telling me things and question me, the walk is even heavier.
There is a good mood. Disposes. There leg. There arm. There head. I do not take a rest for some time. And when I say rest is not working vacation or lie on the sofa. This sometimes I do, but it makes me rest in fact.
A friend would tell me not to care about what others say. But as “damn” you mentaliza fills the SIM bag when someone or “someones” sticks his nose in your life all the time. Upsets. I remember a few days as it was yesterday and it’s not because I have as a hobby brood and making me dodói. It’s that were difficult days that hurt deep down muscles, tendons, joints and soul. Maybe I never told you this because … Well, I will not be repeating, and become a boring. Each has its internal holes.
The truth is that behind the discourse of “I know how you can cure” there is a void. One does not make the slightest idea how to cure someone! I know that no one is required to know, but the fact is that people could respect the other a little more. It costs nothing. (More love please?)
If you know something, or know much of what I went through, you know more than most. Because often keep me. For few. Anyone feel compelled to understand me or comfort me (If it should I need comfort.). At the end of the day, me and me.
Has times the emergency room is like my best friend and worst. I am reluctant, I’m sick of having to go AGAIN, but in the end, that strong and painful injection ends up being the best thing that happens on the day. Because it is one of the only things that will be able to ease the grief.
Already I have taken more medicine than half of people my age (seriously!). Sometimes even gives a little afraid of that in a few years the kidney begins to complain. The liver. I do not know. Something like that. And no longer enough others, people question himself, from all sides. Is that it? Is it my fault? What is this “new” I’m feeling? Do these drugs do more harm than good? Can I even take it all? It is so much that goes head that I’d rather not say, will I pass crazy. I have felt so many side effects “visible”, that I begin to think of the “invisible”.
Added to all this the pleasant sensation of feeling the body as if it had been crushed by a machine. Do not think it’s an exaggeration or a joke, despite being so comic as tragic. Believe me, it’s true. I know what I can handle and already stand it. I SWEAR I strive not to neglect of others’ pain, as close to know how much the neglect hurts.
Some days I get (more) boring. Pain takes our patience (I doubt not you take yours). The good mood. Reasoning. The concentration. The memory. The fun. Do not let him sleep. Do not let relax. There is no comfortable position. Do not let you do anything without her desperately shout in his ear, in his mind, saying that it is there and will not leave you so soon !!!
I do not say this to be pitied. I know it’s hard, but I have to turn around. It’s just a rant. I thank her shoulders and hugging friends, these angels that now and then appear and are by my side when I feel lost. No one is iron, and I should not feel guilty for not being well.
I think no one likes to go through these things. So I wonder: why do you think I should like? In the diagnosis say some trauma can lead to fibromyalgia. Like everyone, I lived / live problems, challenges, but I really do not know what happened (as) wrong along the way, do not even remember exactly since when has become so suffered. So heavy. So hurt. Does internally has so much mess?
Also I do not remember if it was more sustained experience symptoms without knowing what it is, afraid of what might be, or receiving this diagnosis. And since that day, I have been living testing and more testing, switching medications, different and varied treatments, mindsets tests, attempts to find the best way to face it, plus of course all the money spent (never put ” the tip of the pencil, “have you ever stopped to think how much money is it?).
I remember flashes to 9, 10 years old, from doctor to doctor doing tests mainly the knee, to know why always hurt. I remember my parents doing massage on my leg to help, or sleeping in their bed, warm and cozy when I, as a child, crying in pain.
Still brand new had said I wear both cartilages, pies kneecaps. Later, bursitis on one knee by a drop in school. Then tendinitis in his arms. At 16, 17 I remember other flashes me deeply crying in pain, physical and emotional, in the schoolyard of the banks. In piano lesson venting with the teacher, that one day I would not be able to use one hand. Me away from music, forced, was one of the worst pain of my life, that’s what I loved to do more, the conductor of the orchestra called me wonder !!! How so I had to stop? Crying on the pillow, in the emergency room (at the time of injections and infiltrations), on the shoulder of boyfriend or on the school bus back. A teenager and did not know what to do.
They were numerous resonances, X-rays, CT scans, blood tests, etc. etc. It was a pain in the shoulder, but not much on the shoulder, you know? I could not explain right. Now I understand, because this pain “walks”: it is undefined, it is general.
In college, routine work, training, travel, and everything was overwhelming. I cried a little during the most consecutive periods until, at 19, I was diagnosed with fibromyalgia. More or less at 23, I discovered two protrusions in the cervical spine. The sum of it all made me lose the forces and ended up getting a few years away from college.
I graduated recently. Even catching, even crying in pain, I promised myself I would have to win (more) this. It seems like a simple requirement, a simple thing for you? Simple things for you may not be so simple to me. For me it was a great achievement. I was dragged, but I managed to complete the course.
At 25, another diagnosis: myofascial pain syndrome. Now I understand a little better what happened, live with chronic pain being aware of it, although it is still learning how to handle the situation. Resilience. Determination. When anxiety and low mood began to evolve, I ran to the therapist. I gradually learning the arsenal that I have available for this battle: coaching, psychologist, nutritionist, rheumatologist, orthopedic surgeon, general practitioner and I, myself and my thoughts.
Some days seem even last three years. Others feel like I have not moved. Sometimes it brings me down, no matter how strong I am and how much will have. Force applied without any break leads to exhaustion. There is a limit. Mine was overtaken a few times.
I’ve tried to look at the other side – suddenly ignore all this mess she decides to leave, is not it? But I have to confess, it did not work. I read the other day here in Ufa! You have to learn to accept the pain, not escape it. Try to find ways to deal with it.
Then that’s it. I am in another treatment. I have a huge affection for the doctor who is helping to treat me. It’s hard, but I am confident that this time it will work. I will be high. I will be able to live, really live !! I remember every word of support from my friends and family when needed and accurate.
Currently, I’m coming to play. Another achievement is reached.
And what will the other days I have to go (thank God always!). You may feel little pain or moderate. Maybe a lot. Perhaps one day with more smiles than pain. I do not know, I can never predict the “decisions” of my body. Still, I will always try to fill my days of smiles and more smiles.