Jana Hlavacova

Working in @unitednations was my dream since high school. When I learnt about the possible internship during law school - I was determined to go. MS stepped in, but UN in #newyorkcity was additional motivation to get more than well. I was doing everything to get healthy and stay stabilized. #Yoga, #healthyDiet, #SleepRegime, stress management...and two years after diagnosis, I was selected and ready to go! Four wonderful months, living a dream! Then one day, I started losing vision in one eye and was admitted to #LennoxHillHospital. I learnt what a despair is, hated myself for endangering what I had fulfilling a dream and angry that MS got me despite my efforts. When I got better, I got such a support from my close ones, Czech UN NY Mission and the doctors in Prague, I decided to finish the internship and also join the activities of @mssociety NY Chapter. My fire grew stronger. It took longer...and therapy... to deal with the loss of trust in myself and fear, but even that time I felt those four months were among the best of my life. The episode cost 2 weeks of sickness leave and I was back at work, struggling internally, but back on track! I am so thankful and happy I had people around who trusted me, supported me in NYC and CZ, not to give up on dreams despite chronic condition. It was, and is, sooo worth it. #empowering #msawarenessrun #emsp #brusselsairportmarathon

#Psychotherapy is a necessary part of #MSCare. It took me years to tackle my demons. Anxiety, fear from future, but above all wanting to make everyone happy. Pushing myself far beyond my physical strength to fulfill needs and wishes of others and what I thought society wanted, made me quite self-destructive. There is a lot I dealt with and want to be dealing with in psychotherapy. Which is still so inaccessible to many - myself that time included. All therapy I had was provided thanks to support of foundations, NGOs like Nadační fond IMPULS and the admirable effort of MS centers to provide it even it is not reimbursed as part of standard care. Big thank you to those providing and improving mental health care and its #accessibility as well as those raising awareness, making it ok to seek help. Like Marie Hájek Salomonová #MSAwarenessRun #emsp #BrusselsAirportHalfMarathon

Not many people know I was not able to walk for a week, limped for months and it took me like half a year to regain my full powers. One day a friend was taking me to hospital straight from Uni library as suddenly I was not able to move my arm and leg. This time, I got a #relapse care straight away! Helping me to #RecoverFaster. What got me fully to my feet was again perfect #ComprehensiveCare in #MSCentre. Besides right amount of medication, I was provided with #IntensiveRehabilitation by #SpecialisedPhysiotherapist which turned to a group #training as I was getting better. That time I started #yoga! An indivisible part of my treatment. It was only after my health was stabilised two years later with high-efficacy treatment that I started to run, hike and more…but gradually “little victories” turned to “completely normal”. I train for #HalfMarathon, do several-days #MountainHikes, #AdrenalinSports…of course my beloved #CrossCountrySkiing!! But I always remember that it is such a blessing. And to do so, I have to #KeepMoving! As everyone and be lucky…#MSAwarenessRun #EMSP

When I got off the plane in Prague, it was all boom-boom-done. #MRI, lumbar puncture, tests, diagnoses, large doses of steroids to stop the inflammation and in less than a month #DiseaseModifyingTreatment for MS. In addition to top neurology care in a specialised center, I started physiotherapy and psychotherapy to get me back on track. Coming to Prague really felt like having my life saved. I had everything a person being diagnosed in MS needs – wonderful timely care, loving #FamilyAndFriends to support me and look for #information when I was too scared, and all the time in the world as I was a student on a scholarship with uni so great they let me finish tasks when I could. And again, family to support me... I cannot imaging coming through this without a #HealtcareSystem taking care of me fully and not having a chance to take a break, having people depending on me…which is often the case…I am unspeakable thankful not only to my MS team of specialists, but to all of those working tirelessly so that people with MS have the chance of timely diagnoses and up-to-date treatment and #HolisticCare. It is desperately needed. I had it. Like that I could return to school again. #MSAwarenessRun #EMSP

The 4 months from Dec 2011 to Mar 2012 were the harshest time of my life. Although it coincided with a wonderful year studying abroad at lovely University of Nottingham. My yet unknown MS started to manifests at its best. Starting from feeling of #PinsAndNeedles in fingertips, spreading to the whole body to the level I could actually hear it. Loosing #ControlOfHands, not being able to feel or grasp objects. Experiencing #WeirdSensations in legs, like electric current running through all body, #BlurryVision... Feeling the hopelessness of not being able to rely on my own body. I was unfortunate not to receive help from a Uni GP (yes, we do have the miraculous treatment called paracetamol in the east...I know he was just an individual), and not to get much attention in Prague (try to find a slot in holiday season). When I returned to Uni after Christmas break (of course), I was struggling between trying to finish a semester, finding out what is wrong with me and supressing the thought if I will ever make it to spring. What a relief when my Czech GP and neurologist got me an #MRI slot and later an appointment in #SpecialisedCentre. The idiotic me of course asked for a slot during a reading week so that I can come back to Uni on Sunday all fixed up. Surprise – I did not come back to Nottingham until June…and when I arrived, I did not look the same, and did not look at things the same way either – thanks goodness, finally Thanks to all of those in Prague and Nottingham who helped me get through this time – I will never forget, although some of you are far living on various continents!

I was 21 and thought I can do anything in the world. And I could! I just did not remember that to be able to do that long term, you need to sleep, eat well, take care of your physical and mental health at least a bit - and pay attention if something feels wrong. When the docs told me the reason why I have constant feeling of pins and needles in my arm is unknown, I waited till it stopped after a month or two and thought I can forget about that. Well, it seems I was wrong. Nowadays, neurologist strive to find the diagnosis even before it starts to show - eg. when they find #RIS - radiologically isolated syndrome or #CIS - when clinically isolated syndrome manifests. I am so happy the awareness of MS is growing and young people (MS manifests mostly between 20 and 40 Ys) have more chances to get help asap! Or I hope. Thanks to all of those working on it