‘You need to isolate immediately.’ The chances of survival for me are extremely low.’ : Woman with asthma, stage 4 endometriosis says, ‘I’ve been fighting my whole life, I don’t plan on stopping now’

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“It never occurred to me that one day, I’d wake up sick and never get better. This feeling has occured twice in my life.

I have severe asthma and Stage 4 endometriosis, and was recently told I also have Thoracic endometriosis. I didn’t always have asthma. I was diagnosed when I was 17. My doctor told me developing asthma later in life makes it even harder for your lungs to work properly and can cause symptoms like breathlessness, coughing, and tightness in the chest. Thankfully, I have it under control and well managed. Nevertheless, I am prone to more chest infections than the average person.

In the last 2 years alone, I have had pleurisy (lung inflammation)  five times and several chest infections. I get so sick and I’m in such pain that I have to go to the hospital. Also as I mentioned, since 2016, I have been suffering from endometriosis and PCOS. I’ve had eight operations in 4 years. Because of my constant surgeries and due to the many side effects of having endometriosis, my immune system is comprised.

I think it’s safe to say I have felt a rollercoaster of emotions already and it has just been about a month since the virus really took hold. This week, I began thinking about life before the pandemic. I can barely remember it. It feels like it was a lifetime ago. What was life like before this happened? What scares me the most is we don’t know when this will end.

Courtesy of Sarah Jane Allen

No amount of dystopian novels could have prepared me. I never could have imagined enduring a time like this. It just doesn’t feel real. I feel like I am watching an apocalyptic movie which just goes on and on.

This whole concept of self-isolation doesn’t really bother me. I grew up an only child so I am quite comfortable with being on my own or with just my parents. I have been sick the majority of my life and have missed out on many, many things and I’m somewhat used to having to amuse myself, due to frequent hospitalizations and being homesick. Being housebound isn’t new to me. Canceling plans isn’t hard.

Courtesy of Sarah Jane Allen

However, this time, it feels weird on a whole other level. Due to my eighth operation for endometriosis, I am back living back in my family home. I am beyond grateful that I have the opportunity to do so, and it allows me to hide away in the countryside and feel somewhat sheltered from this deadly thing controlling our world. But I won’t lie, living with my parents only heightens my anxiety. Every day we are updated on what exactly we should and should not be doing to limit our chances of bringing the virus into the house. Right now in Ireland, they have advised if you are in the high-risk category, you must cocoon. Sadly, in my household, all three of us are at high risk. However, because one of my chronic illnesses is lung based, each time my dad leaves the house, I am at risk of contracting this virus upon his return. But he has to go, or we won’t have food.

Courtesy of Sarah Jane Allen

For my most recent operation, I had to travel to Birmingham in the UK as the treatment I needed isn’t available in Ireland. When I was at the airport, I felt as if I was going to have a heart attack because of how anxious I was to be around so many people. The airport was quieter then usual, but it didn’t matter. I cried the whole night before and questioned if I needed this operation while clutching my stomach from the pain the endometriosis was causing. As soon as I got to Birmingham, I went nowhere but the hospital. I also managed to get the first flight home four days later.

On March 2, the company I work for announced we were going to be working from home for 2 weeks because of Coronavirus. We were the first company in Ireland to do so. This was when I truly started to panic about the virus. Beforehand, I was a bit flippant about it. I kept saying to myself, ‘Oh it will never come here.’ That afternoon, my teammates started expressing their worries about me and my health. They told me to ring my doctor to see if I should start isolation. When I spoke to her, she told me I was on her high-risk patient list she was going to call at the end of the week – and yes, ‘You need to isolate yourself immediately.’ I did for two weeks until the 12th of March when my mom came to bring me back to Laois (as I live and work in Dublin). It has been 33 days since I began working from home and it has been 16 days of isolation since coming home from my operation.

Courtesy of Sarah Jane Allen

Right now, I feel as if I am in a bubble. In my head, I’m only trying to focus on recovery from my operation, but at times, it is hard when all I am hearing and seeing is about Coronavirus. Restricting my news intake has really helped. So much so, I even sometimes feel normal. I keep telling myself, the reason I’m at home with my parents is because I’m recovering from a major operation — not just self-isolating from the world. I’ve been turning off my phone during the day because it’s so overwhelming. I’m reading books again and writing letters to my friends. One main thing I’ve been doing is just resting. We spend so much of our lives rushing around, feeling afraid to say no to events and such with friends and work. I’m taking the time now to just unplug and unwind. There was one day last week when I spent almost two hours just staring at the sky, thinking of nothing. Just being.

Courtesy of Sarah Jane Allen

I think people’s fear of quarantine is they aren’t comfortable with being with themselves. Being alone. There always has to be noise or someone around them. I guess I have the advantage of being an only child as I’m used to being on my own. Someone mentioned to my dad this week how a doctor has said, ‘Everyone is going to get this virus before it ends,’ and that terrifies me. I take medication on a daily basis just to breathe normally. My body is weak, even more so now after my operation. If I get coronavirus, the chances of survival for me are extremely low. I’m 26. I have so much left in life I want to see and do. I want to fall in love and get married and hopefully have kids. I want to travel the world and excel at my dream job. I want to laugh and dance with my friends. I want to celebrate life with my family. I don’t want to die now. This experience is having so many obvious negative effects on my life. I check my temperature daily. I wash my hands so much and use so much hand sanitizer, my eczema is going crazy because they are so dry from all the cleaning.

I’m terrified. My anxiety has never ever been as bad as it is now. I cry almost every night. I have tight pains in my chest from fear, constantly making me feel like I’m on the verge of having a heart attack. I mistake these symptoms of anxiety for Coronavirus symptoms several times a day.

However, as I’ve told all my friends who are anxious right now, we can’t control what happens, but we can decide how we react to it. Don’t let your sadness or anxiety over this rule. We’ve got this. If we stay mentally strong, our bodies will stay strong, too. Our immune system is stronger when we are mentally strong. It’s okay to be bummed out right now. Feeling some sort of anxiety or sadness around everything right now is normal. If we didn’t, it would be weird. We must allow ourselves to mope or cry or have a moment. But we must not do it for too long. We can’t let that feeling consume us. This won’t last forever. It may not feel like it right now, but it won’t. We need to focus on better days that are coming.

Courtesy of Sarah Jane Allen

It’s tough and it’s scary, but we can get through this. It will make us appreciate the small things in life once the world goes back to normal. We won’t be taking life for granted. Despite everything, I have never had more contact with my friends around the world and I have never felt closer to them. I am grateful for my family and friends and I can’t wait for the day I get to hug everyone I love again.

All we can do right now is to stay strong, stay positive, and follow what our governments are telling us to do to stay safe. We can overcome this. I know I’m a fighter. I’ve been fighting for my life all my life and I don’t plan on stopping now.”

Courtesy of Sarah Jane Allen

This story was submitted to Love What Matters by Sarah Jane Allen from Dublin, Ireland. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more Covid_19 stories from those with chronic illnesses here:

‘I see you refusing to give up your nights out with friends, your weekend bar visits. I see you, and quite frankly, I’m fed up. My life is on hold.’: Woman with chronic illness says ‘we are vulnerable and we matter’

‘Did you think we were ‘lucky’ to stay in bed while you go to work? Reach out to us.’: Fibrodysplasia Ossificans Progressiva warrior says, ‘Check on the people you know who have to stay home for disabilities’

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