Don’t lie, you look healthy

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Stress. Lyme disease. Hospital.

Last year was a nightmare. My body was in a terrible condition. I was always active, I was dancing, I was riding a horse. And now? During the dance competition with my formation, I almost passed out before the jury. Performance, lights, makeup … and I felt like I was drunk and I was about to black out. do not know how I finished this dance, I felt several times that I would fall over. I danced to the end. The group dancers led me outside. I sat on the ground, my head was spinning so that I could not keep my head in one place. Everything was spinning. Vomiting appeared and lasted for a week. This week was the worst time in my life so far. I could not go to the toilet. I could not dance or paint, I couldn’t do anything. The only thing I was thinking about at that time is, does my future life have any meaning? I did not want to live on. I was getting out of bed and the world was spinning right away. There was no option for self-reliance.

This ‘adventure’ ended with an evening visit to E.R. My exhausted body had no strength at all. After a while there was a decision – “You will have to stay on neurology.” Before I got to bed, I was already in the PET scan and before the lumbar puncture (which was postponed to the morning due to vomiting). That day nothing really mattered to me. My panic fear of needles suddenly disappeared. I did not know what was happening, it was all the same to me … The morning brought some hope. Drip with painkillers + glucose repaired me a bit. I could start figuring out what to do next …

Sounds like a trailer to a movie? Unfortunately, it’s a cruel reality

Recurrence can be very difficult. The body is sore and out of shape , it feels heavier by several kilograms and isn’t as flexible as it used to be … Once, I could do the splits at will … Today? Hormones go crazy, cortisol (stress hormone) reaches huge levels, causing easier injuries, the tense body does not want to cooperate. Everyone who has Lyme disease knows that these problems are a norm, weight fluctuations are a standard. In terms of weight – I am currently on the rise. Despite exercise and diet, I have gained a stunning 5kg in 3 weeks.

This disease teaches patience and acceptance. I have a strongly mauled body, but this is the only body I have. Despite this hopelessness, there is something in this story that allows me to look forward to the future with joy. It’s called PASSION!

 

I do not think about it only when I’m asleep

I do not only pretend when I’m asleep

During my studies (Architecture and Urban Planning at Poznan University of Technology) I set up a blog with tips for architecture students. I added some tips on how to solve tasks in descriptive geometry, how to understand the perspective in drawing, what classes are worth going to, and which aren’t. One day I had a dream. A dream in which I painted a pattern on a T-shirt. After waking up, I decided to go to the store and buy the merchandise. I came back with fabric paints and painted my first T-shirt. I painted a horse, of course;)

I uploaded the t-shirt photo on my architectural blog (it was called Forever Scribbling). After a while, a friend with whom I used to ride horses together wrote to me asking if she can buy the t-shirt … It was a long time ago. Much has changed since then. I quitted architecture. I do what I love. I paint, I dance, sometimes I ride a horse. I never thought about the Scribbling seriously. However, the event from a year ago changed a lot in my approach. A photographer (living in England), who once did a photo session with me, posted on her Facebook information that she won a radio meeting with Hugh Jackman !!!!!!! I immediately felt that it must be a sign! I wrote to her if I could paint a shirt for Hugh if she could give it to him. She agreed! And we did it! Anita handed the shirt to Hugh and supposedly he was delighted. There was only a commemorative photo from that meeting but after I threw it on my Facebook Fanpage a real storm unleashed! Such were the beginnings of the Scribbling with the stars project. I started painting for the stars. I went to open galleries, festivals, concerts and many others … The security guards in the nearby galleries knew me already 🙂 I was joined by more people: Edyta Górniak. Martyna Wojciechowska, Marcin Prokop, Ewa Chodakowska, Margaret, Sarsa and many other celebrities. And still I felt like it wasn’t enough for me. I’m constantly coming up with something new! I would not be myself without it!

My friends are calling me the Scribbler

You never know how each story will go … My writing is totally spontaneous. Just like my last idea. I came across it accidentally. I came up with the idea to record music videos in hand-painted stylizations. With no funds whatsoever, I found a riding clothing manufacturer who sponsored the music video outfit I had painted and recorded with it. I collected funds for the recording thanks to the Polak Potrafi service … and … I succeeded. Today I am after recording the fourth music video. I have a head full of ideas, and many more plans for the next ones. I’m doing photo sessions, I’m painting more stylizations, I am a director, actress, manager and I love it! I cannot imagine not being able to do it any further. Although Lyme disease is sometimes different, I learn to negotiate with it. I’m learning that I will not jump over many things, I will not be a great dancer anymore, the body is stiff as a peg, but oh well … I will not look like a model, because the hormones go crazy in my body and when they have a bad day, they click the “gain weight” button and then hmmm I gain weight. Lyme disease is a disease in which we have to learn to compromise …

Why am I writing all of this?

To show you that it is worth having a getaway from the disease. Lyme is a very mean disease. It does not reckon with me, does not respect me, does not care about my plans. Comes uninvited. It eggs on, gives a bit of slack and then attacks again. Sometimes it looks like I’m making up that I’m sick. Because I have so much energy and I make dreams come true! Nobody sees me in moments when I lie, swollen, without energy and willingness to live. You are lonely in sickness. The people closest to me are there for me and support me, but they will never understand how do I feel when the attack arrives. Do not be too mad at your loved ones when they do not understand. Today I know that it is very difficult to imagine how bad can a person feel, when you have never felt so. My medicine is my Scribbling! New ideas and hope that goes with it. I meet wonderful people, I make dreams come true.

And what about Lyme Disease? It accompanies me at every step, it watches and waits. Waiting for every moment of doubt, fatigue and drop in immunity. What about it? Sometimes I let go when it is stronger than me and I wait patiently for my sick body to mobilize and let me return to the ring again. Living with Lyme disease is a constant fight. With depression, weak immunity, with yourself! Sometimes it’s a matter of luck, because the attacks are different and at different times, for example when driving a car, when your meter is over 100km/h You suddenly do not see where the road ends and so you think that tears are running down the cheek because You feel that it may end badly, or when you go down the road and you feel that half of your body is paralyzed and stand on the leg in which you actually have no feeling.

My tip at the end?

Take care of your mood. A lot depends on your mood in this disease. Surround yourself with good people, end toxic relationships. The only toxic relationship you cannot end is Lyme disease and it is enough for you.

How it started (if you still have the energy – read!)

Something strange began to happen to me a long time ago … It’s been ten years since the first strange symptoms. I was explaining the rapidness of my eyes, drowsiness, total lack of energy with a fast way of life. I’ve always been the type of child who had a lot of classes. I have been dancing since I was 5 years old. I started riding horses a bit later. In high school times, I was just a mere guest in my home. School, dancing lessons, horses, traffic … I loved it. I could not imagine going home after school and doing nothing.

The time of studies has come. A trip to a foreign city, new duties, stress … And it started. I felt eternally sleepy, my eye and forearm swollen from time to time. I began to associate that the forearm always swells in the same place where something had once bitten me. I did not see what it was, it all happened in just a blink of an eye. The erythema came out. Terribly itchy erythema. But it disappeared. For a while. Everything returned to normal. At least that’s what I thought back then.
It was difficult to study at the third year of studies. Architecture and Urban Planning at Poznan University of Technology is a difficult direction, and the third year was the most difficult year for me. Most projects, least sleep (there was a time when during the week you slept 2 hours a day). A sudden decrease of energy I had back then was hard to even describe. I felt so bad that I decided to do blood tests. OB level high, TSH too high, PLT too high …

A visit to the endocrinologist – hypothyroidism with Hashimoto, all at once. I got meds and from that moment it was supposed to be all good. Well … it wasn’t. Increasingly, I swelled, I swelled to such an extent that I could not see my eye … my lips were as if I had failed to inject Botox. I went to the hospital, first for dermatology, then a branch of tropical diseases. Lots of viruses, bacteria, medicines … Private tests and no diagnosis. Nobody knew where it all came from and what it is. Allergic tests came out clean, and I was still swelling. It was bad. I could not plan anything, because the swelling came suddenly. The swelling was so bad that I was not able to leave the house. I had to change all the plans. My heart ached. The dances had to wait for the swelling to come down. This lasted often 4-5 days .. What was left for me to do? Lying and feeling sorry for myself? What came later was even worse … imbalance, paralysis of the body … I was looking for help in diets, specialists. I could not find the solution. It is still not perfect. But as everyone affected by Lyme knows, the only option is to look for your own way. Herbs, bioresonance therapies and other mojo things, whatever makes you feel better … and sometimes it was, but sometimes it wasn’t. Borreliosis sinusoid. Just like on a roller coaster … it has its ups and downs …

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