When You Do Everything 'Right,' but Chronic Illness Strikes Anyway

This weekend I ended up in the back of an ambulance. This is shocking for a lot of people, but those who know me know it is just a side of my lupus I usually keep very well hidden. It is a running joke that people with chronic illnesses fake being well more than people assume we fake being sick. I remember the EMTs telling me in the back of the ambulance, “Well if your face didn’t give away how much pain you are in, your stats definitely do.” This is something I fight constantly: deciding what to share and what to keep private. If it had been a private incident I would probably choose to keep it that way, but so many people showed love and concern while having questions about what had happened.

Almost a year ago to date, I competed in a beach volleyball tournament while at the tail end of chemo treatment. It was physically challenging to say the least, but mentally I felt nearly invincible. As my women’s partner and I placed fifth overall and my coed partner and I pulled out a first place win, I look back still stunned at having made it through.

To most people, competitive sports are just that, sports. A fun athletic activity that is an enjoyable hobby. For me, continuing to play volleyball is about so much more. It might sound cheesy, but in a way, it is my way of clinging to a stubborn grasp of control over a very uncontrollable situation that is my lupus diagnosis.

Ever since I completed my last chemo treatment last April, I have been working to regain my strength and stamina and rebuild what I can of my body. It hasn’t been easy. In fact, it has been quite frustrating. I remember what I once was. I remember how my body used to operate. I know I will never be that again. For most people, they get out what they put in. I often have to put in double or more to get half the results. Most decisions create a catch-22 result, but still, I go to the gym, I eat well, I don’t smoke, I take my medications and supplements, all to try and win a foot race against a racecar.

This past weekend, I lost the race.

On Saturday as the sun went down it got chilly (by Florida standards). In the quads quarterfinals, I had an annoying hip cramp, but I played through it and put on layers in between games. I had a collision with a teammate that left me with a pounding headache for which I took migraine meds and chugged water. In the finals, I had a calf cramp that turned into an excruciating charlie horse. After a timeout, some watermelon juice and stretching we resumed the game and placed second overall in the tournament. I started to pack my things and then went to get my car to move it closer to load up. A good friend who was visiting for the day sent a message that I had forgotten to say goodbye. I got out of my car and went to say my goodbyes.

As I was hugging him my back started cramping causing me to double over and then my leg. The next thing I knew, I couldn’t stand up. As I was lowered to the ground my vision started getting fuzzy. I couldn’t bend my legs or breathe because I was in full body cramp. I don’t remember much. Some people play all day, drink alcohol, party all night and get up to do it all again the next day. I had drunk fluids, ate snacks, stretched, stayed warm, etc. None of it mattered.

I’ve been in the ER more times than I can count and my pain is always nine or less. That night it was a hard 10. I just wanted the pain to stop. And I couldn’t make it go away. Finally, the fire department came. They put in an IV and pushed fluids.

As I was being put in the back of the ambulance, my left leg started cramping so hard my blood pressure shot up to 170/122. They were worried I would have a heart attack or stroke. They laid me on my side, packed my leg with heat packs and started squeezing the IV bag to push fluids faster. After four bags, over an hour and my blood pressure returning to normal they let me sign a refusal to be taken to the ER. (Once the issue was taken care of the last thing I wanted was to go to an unknown ER with doctors who know nothing of my medical history and would want to run a million unnecessary tests.) Sometimes lupus just doesn’t want to cooperate. Sometimes your body just can’t take any more. Around 2 a.m. I got in an uber and went home. I drank Pedialyte and ate potato chips as per the EMT’s instructions while sitting on the couch with two of my best friends. And I cried.

I cried that this had happened in front of people who only ever see me playing volleyball. Most of whom don’t even know I have lupus. I am selective about what others see. This incident had taken away that aspect of control and I was once again in an uncontrollable situation. I know it could have been worse. I know I might have been driving when all this had happened. Instead, I was on the sidewalk surrounded by friends.

It didn’t matter that I had done everything right that day and leading up to that day.

On Sunday I could walk so I went and played in the coed tournament. By the time the day was over I couldn’t walk up stairs and when I woke up on Monday I couldn’t get out of bed. Sometimes stubbornness contributes to the symptoms, sometimes it doesn’t matter if you do everything “right.”

Lupus has other plans.