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Getting Through the Days With Chronic Illness When Life Just Sucks

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This is not a positive or inspiring post. I debated whether I should revise it to be more uplifting and decided against it. There have been times when I’ll search for posts from other people dealing with their issues and am disappointed when it’s all super positive and happy. It’s great to get to the point where you can look back and move on, but there’s a big chunk of time between when something happens and when you get over it that most people won’t talk about. So let’s be honest, sometimes life just sucks. And that’s OK to admit, and it’s OK to talk about it.

I had my first more-than-mild lupus flare since the original six-month debacle, which I have to say, was an experience. Since getting the lupus diagnosis I’ve tried to avoid things that come with the possibility of promoting a flare. From not going out to parties to limiting sun exposure to avoiding concerts to any kind of social interaction that could include bright fluorescent lights, loud noises, close quarters… you get the picture. This has, as expected, affected my life in ways I never wanted to admit.

I’ve often wondered why anyone would want to be friends with someone like me now. I have to cancel plans and can’t really do a whole lot of anything. How boring have I become?! I think this is something that many people with chronic illnesses face on a day-to-day basis. Who we were is not who we are now. There is a grieving process that has to occur and then we have to figure out who we have become.

It’s easy to say you are not your illness, but that may be the type of luxury thinking that people without this kind of issue try and throw at the problem. No one wants to deal with the fact that you have changed. Your life has changed and how you function in it has changed. In reality we are not our illness, but we are the person dealing with it. While you can push through the cold/flu/whatever, we are left trying desperately to figure out if pushing just a little bit more will end up being the last straw for our bodies to give out. And then of course there are the situations that cause a flare that we can’t control, which is exactly what happened this time.

I went to the dentist. It was not going to the amazing concert with my friend (which I didn’t go to for fear of a flare) it was not the strenuous activity spent outside in the beautiful mountains (which I ended up enjoying for about 30 minutes before turning into a boring person sitting on the bench for fear of a flare). Nope, it was the dentist. Who I had to go to. It was the bright lights, the drill, the shoving of needles into my gums and the normal trauma of a crown. Months of playing it safe ended up with my immune system attacking multiple organ systems.

It started with a low grade fever at the doctors office, after about a week my platelet count had dropped, my hormones were a wreck (think PMS on steroids), my back was a giant painful spasm, migraine in full swing, pure exhaustion and there was a giant cage wrapped around my chest, just to name a few. All I could do was lie in bed and think. The idea of seeing anyone else was something I just couldn’t imagine, pretending I was OK was not an option. I’m lucky in that I have family and friends who care and check up on me. Throughout this I’ve met some amazing people who seem to be able to see beyond the “sick me” to the “me” underneath, and for that I am grateful.

I’m lucky not only for the people I have in my life but for the fact that this is one of the few moderate flares I’ve ever gotten, and it’s already going away. Many people deal with much worse on a normal, everyday level. I’m also lucky to have found a doctor who worked with me to find a cause and start treatment.

Not that this is easy. It’s a struggle to think about the fact that this is something I’ll have to deal with for the rest of my life. It’s also something that those who are close to me will have to deal with for as long as they’re around me. Whatever I do I have to consider the potential options, from whether I stay out that extra hour to whether I chose to have kids or not. I have to think about how what I do will affect the people around me.

We all have our issues that we deal with, the everyday struggles and the ones that tear at our souls. But on some level it doesn’t really matter. Regardless of whether we “figure it out” the world still goes on. Life doesn’t stop to give you a chance to catch up, it just keeps going. One day you’ll wake up and it will be a little bit easier to just keep going. Cheers to the good days.

Originally published: January 6, 2018
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