Reflections of my Big Sick

As the end of the year approaches, so does my fourth anniversary of the big sick and I always use this time of year for reflection…

Back in 2016, I had a stressful December overall. I had just gone through exams, I had just started a new job, and I had a whopping nine different Christmas events to attend that were scattered across Victoria. It did not even occur to me that I could say no to some of them (serious people-pleaser alert). Glen also had to go away for work and that felt like the straw that broke the camels back with my stress levels.

The night before he was supposed to leave, we enjoyed some Indian food and I developed gastro symptoms. I thought I just ate something that upset my stomach and didn’t think much of it but that quickly turned into hives and soon I knew something wasn’t right. I spent the evening in the hospital where they gave me steroids, antihistamines, and medication for the vomiting. But all I could think about the whole time was that I had to get out of there so that Glen could go to work. I kid you not, it did not even cross my mind that I needed to stay in hospital or that it was okay for Glen to call in sick to take care of me and be with me.

So, we went home. I fell asleep on the couch and woke up with even worse symptoms than before. But Glen was at work and I was too scared to go back to the hospital by myself. We had doctors come out to the house who said it might be an allergic reaction, but they were not sure. So, for the next week I still couldn’t keep down food, and the hives took over my whole body, shutting down my eyes and keeping me awake all night with severe itching and pain. Most nights I sat in the bath the whole night crying with my cat J.D by my side and tried to sleep during the day. And all I could keep thinking was that I had to get better soon so that I could attend the Christmas events, work my shifts at the gym, and not let anyone down.

And after about a week of this, each morning I would wake up and a rash would clear from one part of my body. First, my hands cleared, and it was like the rash never happened. But wherever the rash left, it was replaced with searing joint-pain. The worst pain I had ever felt in my life and I could no longer move my hands. And each morning this would happen with a new part of my body until the rash was finally gone, and all of my joints were seized up and on fire.

I lost all strength in my muscles (especially my legs) overnight and could barely walk but I refused to not take myself to the bathroom no matter how much it hurt me. And guess what. I wasn’t able to attend one single Christmas party that year and spent my 27th birthday inside, under the air conditioner. Glen did bundle me up in the car and take me to the beach that evening, however, because over those weeks I had been having a reoccurring dream where I would swim in the ocean but I couldn’t get my head under the water no matter how hard I tried (the same dreams came back during lockdown). I was so scared that I would die and never see the ocean again so still to this day, I ALWAYS put at least my feet in the water no matter how cold it is.

And as time went on, I had some small wins, my joints while still in agony started to move slowly again and I was able to turn a doorknob. I was finally able to get myself down the steps in my townhouse and see my other cat who had spent these weeks meowing at me to come down but too scared to come up and see what was going on. And it truly felt like a miracle when I was strong enough to finally take a three-minute walk to a big tree near my home just to touch it.

Soon enough I could drive again and was able to take myself to a doctor’s nearby to get some tests (my regular GP closed down over the Christmas period). My inflammation was through the roof and my liver was shutting down, but I was just told to keep an eye on it all and see what happened. And while my results did indeed get better with time, they are still slightly abnormal even to this day. Years later I was told by another GP that I had a case of reactive arthritis that was caused by an infection in the body.

And in the four years since then, my body completely changed. Now joint pain is just a regular part of my life, I get night sweats if I spend time in the cold, if I don’t pop antihistamines when I feel itching I can break out in hives, and overall I struggle to exercise and have put on almost twenty-five kilos since that event. I have had all sorts of loose diagnoses ranging from rheumatoid arthritis, to fibromyalgia, to just “well that sucks.”

And while there are times where, yes it really does suck (such as typing this blog post with searing pain in my hands) something else changed in me too, and some things came up that I did not expect.

The first thing that occurred was fiery balls of rage building up inside of me. After a lifetime of keeping my emotions in because I thought that made me stoic or something, it all came gushing out without any control. I would wake up in the middle of the night in a sweat thinking about a certain situation where I didn’t stand up for myself and I would feel rage completely take over me. Not only rage at other people but rage at myself for being so passive and for caring so much about what other people thought. For not implementing much-needed boundaries and for not saying what I meant. So now I have a golden rule that I never bottle anything in, even if I am scared about what the other person is going to think.

I also felt an insane amount of gratitude, something that I have noticed that not many healthy people have. Once you have things taken away, you can’t help but feel insanely thankful for every little thing that you do have. Being able to drive my car to the beach, walking around the city holding hands with Glen, having the ability to work from home, listening to my favourite music. These are all things I will NEVER EVER take for granted.

And while many things have been taken away from me after this big sick such as long car drives or nights without pain, I have found freedom in the things and the choices that I do have. In those four years G and I both graduated from University, both started our businesses, paid off all our debts, and even survived a pretty intense lockdown together.

But I still have frustrating moments too. Such as forking out thousands of dollars trying to find a helpful practitioner and still not finding anything useful except anti-inflammatory drugs. Or sitting down with loved ones and having them ask lots of questions about my health without them ever really understanding why I can't do the things they ask such as travel. But I know now that I do not have to explain myself and that someone without my body could never really understand what it is like. Or, worst of all, when people feel sorry for me and tell me how sad it is that I am not the way I used to be or that I can't do x,y,z.

And while I do have personal goals regarding my health, I do not feel sorry for me. This big sick made me change and upgrade immensely. I say no all the time now, no matter how guilty I feel. I know that my health is the most important thing in my life, and I can find a miracle in almost any moment. I now have so much of empathy for people and I also have wisdom, knowing that life is full of twists and turns and we just have to sit back and enjoy the ride.

And as for Christmas, G and I have narrowed it down to four Christmas events each year and I refuse to drive long distances. We even have started a new tradition where we book a lunch just for us Christmas day and then drive into the city and lay on the grass next to the State Library and dream about the future. I can tell you now that this kind of magic is not something my life had before the big sick.

So, here I am reflecting and no longer feeling anxious when I look at these photos and recall the events. And hoping that I can pass on to you that our greatest pains can become out greatest lessons. And hey, maybe there is something you can say no to this Christmas. With all the love in the world, Shalee xo

P.S. When I was searching “reflections of” trying to make sure that I was using the correct grammar, I came across this song and thought it was beautiful and summed up my experience! Thanks Universe xo.