Living With Chronic Illness in a Time of Pandemic

I knew this virus was serious before it even landed in Canada. Anyone with a chronic illness knows just how quickly good health can be taken away, and with that, we’re hyperaware of these things that may impact our well-being, regardless of geographics. It’s shared empathy. Shared caution. Shared fear. Shared with those affected, no matter how far away.

For me, being diagnosed with Ulcerative Colitis ten years ago was life changing in so many ways. My doctor at the time gave me words that would stick with me – “This is life altering, not life ending.” And for the most part, this is true. I say “for the most part” because it does end some parts of your life. It can sometimes feel like it is over, however in the end, I always come back to those words, and remind myself that it could be worse.

I also say “for the most part” for one heavy reason, and it is this: Complications from the illness, and it’s treatment can, in fact, become life ending. Not always in totality but for some of us, nearly so. I experienced this first hand three years ago when I was diagnosed with a blood clot in the base of my skull. A rare complication from the combination of both my illness and treatment. Something that wasn’t even on my radar was suddenly inside of me – Narrowly blocking the entire vein. The fact that I didn’t have a stroke, or any number of further complications was a miracle.

I overcame this obstacle with my life fully in front of me, and in fact, feeling better than I had in a very long time. One major thing had become clear, though – My current treatment was failing me.

In came Remicade – My miracle drug. I had been against it for years – If you read anything about it, odds are you would be too. It’s a scary medication. From the way it’s made to it’s potential reactions, however for many, including myself, it’s a necessary one.

I began infusions shortly after my blood clot diagnosis, and three years later I’m still on them. Fortunately for me, I’ve experienced no major side effects aside from general tiredness, sniffles, and nausea, especially after treatment. Nothing that I can’t live with, and more importantly nothing that isn’t worth it.

Every eight weeks I sit in a reclining chair while a nurse pokes me (up to three times, thanks to my stubborn veins), and receive infusion treatment for roughly three mind-numbingly boring hours. The medicine is cold so I bring a blanket and wear comfy clothes. Is it fun? Nope. Is it worth it? Yes. I cannot stress this enough – For me, it’s a resounding yes!

The things I do on Remicade are things my illness stole. Am I 100% healthy? Unfortunately, not. Is life easy? Not at all. Am I cured? Not yet. But do I have hope? You bet. I will never be a “normal” person but I’ve come to terms with my version of “normal”. Or I had, until now.

“Normal” – This simple word has lost it’s place in the current state of our society. Our world has been completely and utterly rocked by the COVID-19 pandemic. Our lives, our “normal”, well, they just aren’t normal anymore. We are living in a time of extraordinary circumstances, the likes of which I don’t think anyone was truly prepared for. I know I wasn’t. I live in Canada. We saw it coming – We did. We prepared, physically – That was the easy part. What I wasn’t prepared for was the emotional and mental toll it would begin to take.

At the beginning of this year, I moved to the suburbs, taking the train into the city each day for work. A nice, easy commute. Or it was, until the number of COVID cases in the city and it’s suburbs began to slowly increase. Day by day the numbers came in – Slowly increasing, and with them, my anxiety.

You see, Remicade – My miracle drug (along with another medication I take), is an immunosuppressant. It works to tear down the overactive immune system that causes my Colitis. That leaves people like me vulnerable – Not so much to catching this virus but to complications that could stem from it. I am, as people online have begun referring to themselves, considered #HighRiskCOVID19.

“High Risk” not the term you want to be lumped into at a time like this. Alas, here I am.

As it became more apparent that the case numbers were rapidly increasing, and that people were being diagnosed only after taking public transit for up to a week before testing positive, I knew my daily life had to change with the world around me. Blessed to work for such a supportive company, I took the necessary steps to begin working from home.

Now, a lot of people would leap at the opportunity to work from home. A lot of people pine for it. I, however, am not one of them. I may be relatively young but I still believe in the old school way of doing business. I believe in collaborating and meeting face to face. I believe in the inspiration that comes from the world around you, and that includes the people you work with. I enjoy my daily routine and the sense of purpose it gives me. I enjoy going to work.

One of the main reasons for this – My illness. I’ve experienced two hospitalizations in my career. I know what it’s like to be torn from daily routine. To be robbed of the ability to go outside. To interact. To be a part of society. I know what it’s like when your days begin to blur, and you feel like you’ve lost your sense of purpose. I know what it’s like to have all of the things people take for granted away. So I choose to participate in life to it’s fullest extent, and for me, that includes something as simple as going into an office every day.

That brings me to now – I’m six days into self-isolation. Ever-so-grateful to have moved in with my boyfriend at the beginning of the year. And even more grateful that we chose to move out of the city and into a townhome with lots of space, and rooftop patio that is still too cold to use. Grateful to have the support, however also back in that familiar territory. The one that took it’s toll on me both mentally and emotionally before, is now surrounding me once again.

I cannot catch this illness. Period. Which means I also cannot do pretty much anything outside of the house. At least I have my work. I’m happy to remote in every day – I still do have THAT purpose. I do love working at my pretty home office set-up in our living room, with the light from the day pouring in and my cat snuggled close by. (Not to mention, the coffee is better, and I don’t have to worry about how my stomach will feel each day). There are silver-linings to all of this, if you pay attention. However, it’s hard. The days are blurring together, time is losing it’s meaning. I’ll work longer hours to keep occupied, and at the end of my days I’ll craft. I’m also here, finally writing again, so there’s that. But I’m drained. I miss people. I miss meaningful interactions. I miss the office banter, and the lunchtime equivalent to the movie Groundhog Day, which involves shopping at the same one store, over and over. I miss putting on my grown-up clothes (though, don’t get me wrong, the comfy cozy wardrobe life isn’t so bad either). I miss going out to dinner (my wallet doesn’t). I miss family. Friends. Special occasions, and togetherness. I miss hugs (okay my boyfriend obviously hugs me, but you get my point). I even miss grocery shopping.

I miss everyday LIFE.

Some may say “Why stay on this medication?” The answer is simple – Life. Living. Without it, I’m back to where I was before. It’s worth every bit of self-isolation to come out the other side of this strange new world with the ability to do all of the things I love. All of the things this medication allows me to do. To truly live.

The benefits of staying on this medication greatly outweigh the risks of stopping. This virus will pass and what we’re left with after is what truly matters. I have my next treatment next week, and my body is already craving it. I feel the symptoms of this illness coming back as my last treatment fades off, and I’m ready. Not to say that I don’t fear the fact that I’ll have to head out into the world, and into a clinic with potentially sick people to receive it. It gives me great anxiety. Sometimes this all brings me to the point of tears. It truly does. It’s what needs to be done though. People like me, we don’t have a choice. We do what we have to do.

I think for the first time the world is seeing this too. Seeing the way illness robs so many of us. Seeing life through the same lens we do. I’m grateful to those who are healthy who are choosing this same life of isolation I am – Not necessarily for themselves but to protect people like me. People worse off than me. All of us.

It’s sad and overwhelming when it feels like the world is falling apart but then you look around and you see that we’re all in it together. If you really look, you’ll see the perspective we’ve been given over what’s been taken away. If you really look, you’ll see what I’ve seen for ten years now – That life is what you make of it in between the battles.

Illness is hard work. Even if you don’t catch this virus, you’re affected by it. There’s no escaping that. We all are, in some way or another. Life with chronic illness in a time of pandemic is not ideal but, really, none of this is. We make the best with what we have, and carry on.

 

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