It’s already May and I would have never thought that time would have flown so fast even while being isolated at home for nearly 2 months.
At first it felt as if we were all starring in a Science Fiction movie or as if 3rd World War had broken out. Not exactly but close enough as many conspiracy theories, extreme opinions and talks were out there trying to rationalize our new inhumane, social distancing reality due to the pandemic breakout of COVID-19.
I said to myself. “Everyone’s trying to explain what we are going through. Is it real or is it just a hoax? Does it really matter? No, we just need to be careful and do what we’ve been told, especially us who are more vulnerable. Protect ourselves and our loved ones by isolating ourselves. But is it as simple as that?”
As I am one of those, who was born with MPS I Scheie and receives a weekly, enzyme infusion at the hospital I am considered vulnerable and therefore during this crazy period I had and still have to be extra careful, not only for myself but also for my parents with whom I’m living.
At the very beginning I faced flu symptoms that made me isolate myself to my room for 2 weeks before the official lockdown in Greece. I was extremely worried and had to be in touch with my doctor to monitor my health. Following the news or Social Media and the number of deaths especially in Italy and Spain was simply a nightmare and therefore made my situation even worse.
As a result I missed 2 treatments until we made sure I was healthy. But home was the safest place and I was ready to miss even more treatments as Home treatment for patients with Lysosomal diseases is still non-existent in Greece.
During that time we were meeting regularly online with the rest of the Board to see how we could care in the safest and quickest possible way for our patients during these challenging times. I also had to deal with my flu symptoms and my own psychological state.
We had to make sure our transportation to and back from the hospital including our stay there would be a safe procedure for us. Taking a Taxi or public transportation was not safe anymore. Webinars and psychological support groups from “MPS Europe” and other international Associations were organised to help patients deal more efficiently with the situation.
The Greek Solidarity Association, where I was elected Secretary back in March, made sure that the Red Cross would handle my transportation as safe as possible during this crisis. I had to also find a way to transport my vials from a public Pharmacy to the hospital where I receive my treatment. I had no one who could assist me with that. The Association informed me that volunteer nurses from my municipality could offer help and finally they were the ones who transferred my vials.
That was and still is one of the most stressful periods I have ever been through.
Maintaining our sanity was equally as important as keeping physically healthy against the virus. Having no physical contact with my friends made it even more eminent for me to keep an online contact with them. Painting and creating is always an important, creative outlet for me.
Additionally training and not neglecting my MPS muscular challenges had to be one of my motives. Being a Therapeutic Refined Pilates instructor made that “task” easier as physiotherapy is still not an option.
Transitioning now to our new reality where Greece is slowly abolishing its strict measures, we need to keep our social distancing and therefore my life is still not how it used to be.
Sadly most people are acting as if nothing happened and are not really being careful. That makes me feel very angry and realize this pandemic didn’t teach us anything. At the same time I understand we are only humans and I am no exception to the rule. I most certainly miss my old carefree, relaxed ways.
Having to disinfect everything, wear a mask whenever I go out and avoid human contact is part of my new reality, which I don’t really enjoy. Keeping safe though is still a priority and being patient is a virtue that we can all work on.
So I try and see a lot of positive outcomes in this great challenge. We are now fighting even harder to achieve Home therapy in Greece and hopefully we’ll get there.
Comprehending how ephemeral life can be, being grateful for what we have is so important. Some of us reprioritised our values and redesigned how we’d want our “second chance” in Society to be like.
Family and friends hopefully became even more important to us. Social Media and the internet used correctly can be a great tool that can make us more flexible at socialising, working and ultimately surviving. During the “Spanish flu” people were not as privileged as modern Society is nowadays. In a nutshell, the key to everything is balance. I do hope balance can be the medium for us to remain socially happy, humane and ultimately safe in these surreal, momentous times we are living in.
Secretary of the Greek Lysosomal Association “Solidarity”