Quarantine Vs My Life

So 2021 has kicked off to a rip roaring start. One week in and we are all inside until further notice.

Over the past year I have spent many days, inside my room, pondering and thinking about life of other people. The ones who say they feel "trapped" or "hate" being at home with their families.

It confuses me slightly to say the least. Many days I have had to restrain my thoughts or voice them to a very small audience, AKA my mother, and pretend like everything is all fine and dandy.

The main reason it confuses me, is that before quarantine started all I kept seeing on social media was people begging to spend more time with their families. Meeting up for impromptu visits to their grans, and giving everyone hugs like it was a new currency. Now all I see is people documenting home-schooling or stay at home and describing it is all going chaotically.

For a number of reasons I agree with them. I remember being home-schooled and I was a chaotic child. Most days I did not want to learn, I was at home why would I want to? I would just sit around watching TV, or doing something other than "learning" because doing school work reminded me of school. To be reminded of my school experiences was like opening a stab wound, very traumatic.

However, I also sit here now as a Chronically Ill person feeling frustrated. Even before this pandemic was on our radars I was never one to engage in social contact. If you hugged me I would get very tense, and my cortisol levels would SKY ROCKET. Social contact has never been easy for someone like me. With a history of being called "mature" and "wise beyond my years" I never felt like I could relate to my peers. How could I relate if all they wanted to talk about was boys and things I had never heard of.

The things on my radar were: How long does it take to get to the hospital? Have I remembered to take my medication today? Have I got my Headphones in case I have to have a blood test? Have I got my list to remind me what I need to tell the doctor? Why am I so tense? How many appointments have I got to attend this week? HOLY SHIT SIX???

Yeah I was never one to understand my peers before let alone now. I mean as of currently I socialize pretty well, but even so I look at my life and think yeah no wonder people did not understand the words "I have an MRI tomorrow". People who are healthier than me, have never had to experience trips to A&E because you feel like you are having a cardiac arrest every time you stand up.

For me my journey through my teenage years was: get up, talk to people, get anxious talking to people, go to the hospital for issues, get diagnosed with a shit ton of problems, have an autoimmune disease, be in immense pain and get told by a lot of people "you are strong enough to get through this", be rejected medication I actually need, go to college, work myself to the point of passing out, be told "why do you feel like you are struggling?", tell people I am struggling, be taken seriously, get shut in my own house due to a global pandemic and continue to watch my health deteriorate like a burning blaze while people are out and about living their normal lives.

This journey has no where been easy. People will often express to me how brave I am, or how intelligent and mature I am. When actually all I want is to be able to be with my peers and know what it feels like to be a "real" teenager. One who can make jokes, talk about things you'd never discuss with anyone else and relax in their company.

And trust me when I say being a modern day teenager has its problems, that are usually expressed to the rest of the group. However with mine, it is quite different. It's not like I could just drop the words "oh yeah I got given a new diagnosis the other day, doctors am I right?", because people would look at me like I am from another planet. Literally.

Even before this pandemic I was still ill. I had to take hand gel wherever I went, record times and dates of medication intake, go to the hospital constantly and stand two feet from everyone due to fears of suffering a bout of a sudden illness. And I will be honest it is exhausting. To make sure you put your health before happiness is not exactly very enjoyable.

Having to cancel planned meet ups, because I am to fatigued to go is like a kick in the teeth. All that planning with my friends, for my body to immediately say "haha screw you, have a bout of severe pain and fatigue". It is no picnic. Even when I went to college, I could never relax properly as I always tried to stand away from people who sneezed or coughed abruptly. And believe me that is not me trying to say "EWWWW GERMS!!". It is a way of me protecting myself and avoiding three weeks isolated in my room, feeling like I am going to die.

Chronic illnesses hit you out of nowhere, and when you have never heard of them it can be confusing. I never knew what they were until my immune system failed on me two years ago, but I learnt how to deal with it and cope with its existence. I have learnt that being away from people helps me to heal and get better from feeling awful.

The pain can be fine one minute, and the next it feels like you have been hit by a truck. All your bones are broken, and doctors look at you and say "you are fine go home". Hours of rest later you are no better, but have to leave the house because you have an event to attend. Even though you cannot physically stand up, you still force yourself to go. You plaster on a thousand layers of make-up to make sure people don't comment on your paleness, and practice smiling in the mirror to make it more believable to others that you are fine. However once you are there the noise is too much. Everything is brighter than it should be, and your head physically hurts to touch. But your family is enjoying their time out, you should too. So you stay out, which causes more harm than good. People you know talk to you about how you are, but all you can think about is how dizzy you and counting down the minutes until you go home. Once you get home, you take your pain medication and lay on your bed for hours trying to command your body to stop hurting. Even after sleeping for one, three or twelve hours you feel exhausted. People ask how you are, but you are so fed up with answering that question you smile and say "I am fine thanks" which is code for "For gods sake I feel like I am dying". After that the process starts all over again.

Even by telling people how you feel or show them your medical history some do not believe you. People will disregard your symptoms and say you are not valid enough. Others will say they know "cures" that can help your chronic illness, even though you've been through ever medical textbook and know its incurable. I spend most of my days doing everything to please people. Even if it physically annoys me. I feel like I have to explain my health history every time I go out with someone, to compensate as to why I might end up passed out or screaming in agony.

But I will smile all the time, even when I feel like shit because people want me to.

My brain will go on autopilot mode when someone mentions the words "essential oils", "just think away the pain" and "you look so healthy" in any given sentence.

My body has tolerated so much pain that to me, I am in a constant state of unease.

And yet here I am. In my house typing away at a laptop with my back feeling like its breaking every vertebrae, just to tell you this.

When people get let out of their homes, and are allowed to see people freely and hug them my life will not change.

Many people's lives will not change and never have changed, because our body's experience this battle constantly. We have no other choice.

I rely on help from others to help with domestic chores. I rely on mobility aids and pain medication day-to-day. I rely and my doctors telling me when is the best time to do something.

Just because a pandemic is over, does not mean my health problems will too.

It's not like I will be skipping around a field and singing "The Hills Are Alive With The Sound Of Music" because lets face it I cannot skip or run. Even if I tried.

My life will remain the same: socially distanced, applying alcohol gel to my hands every time I am in public and having doctors appointments to figure out what is wrong with me.

And I know I have things that I should be positive about, but really? Do I have to be a constant beam of positivity for people? I feel like that is my full time job now, making people happy that someone like me (i.e. someone who has been through a shit ton of trauma and side-affects from treatment) can "survive" and be "positive".

To be honest, I understand people who call me all these positive phrases and congratulate me on being brave and wonderful, but is that a good thing? Is it so amazing that me a seventeen year old is inspiring to so many people because I survived cancer and battling chronic illnesses?

I do not think I will ever know, but what I do know is that just because the world changes so rapidly, does not mean I will as well.

I have to learn to live with my body constantly changing its mind on things. I have to learn to be able to speak fluent "doctor" and address nurses like I have a degree in medical science every time I visit the hospital. It is very hard. It is no picnic for sure and I know other people who will feel the same as I do.

Whether you have faulty genes, lungs that don't work or joints that just do not do what they are supposed to. We all know how it feels to have the whole world act like everything will be normal in a "few" months for them, and not think about us.

Be honest before the pandemic how many workplaces, education centers, hospitals or family members were so accommodating to having you being chronically ill? For me it was not very many.

I spent years trying to address my concerns to people only for them to push them away and tell me to do "exercises on the internet", because that will help me.

Yes that is very much true.

However, I know people who will be desperately to hug and kiss everyone after this pandemic is over. Desperate to be able see others and know what a hug feels like. And to that I say: Enjoy it. Enjoy your Nan kissing your cheek, or your partner hugging you after so long, or even high-fiving a friend you have not seen in a year.

For me, I will still be in my room playing vinyl records, and drinking tea like it's going out of fashion, carrying on like nothing has changed. Still the same old me, just a little bit more annoyed if people start getting in my personal space.

Molly-Tastic Treves