The Upside To Lupus
I’m happy to be sharing the story of Camela Thompson as part of the Chronically Driven series, Camela is a successful writer with a beautiful family coping and thriving through Lupus. If you like to inspire others too, please get in touch.
You’re going to want to read the rest with a cup of tea, its as motivated as it is heartfelt. Thank you Camela for sharing everything so candidly!
I have always been a perfectionist. I would sit at a table as a child with my nose scrunched up, trying to draw the exact expression of our family’s dog. I would start, stop, tear up the paper, and then start again. I kept going until it was perfect or I was sick. The more unrealistic the goal, the more I would stress myself out. The more I stressed out, the sicker I would get. It’s a vicious cycle that continued to escalate as I aged.
When I was young I had asthma, tons of food allergies, and colds would turn into secondary infections or pneumonia. When I was a teenager, the symptoms turned into arthritis and irritable bowel syndrome. At the age of twenty-seven the symptoms spiraled. I lost forty pounds I didn’t need to lose, had a constant low grade fever, felt like a fuzzy blanket covered my brain (I couldn’t think straight), was so exhausted it hurt to move, and eventually the pain escalated in my joints and abdomen until I couldn’t sit up for more than twenty minutes or dress myself on my own. It took about a year of symptoms and blood work to determine that I have systemic lupus erythematosus.
The diagnosis was frightening, and at first I sat drenched in pain, wallowing in a depression. My own immune cells were out to get me, attacking my central nervous system, joints, and intestines. After hitting a low that involved lying in bed all day, I picked myself up and started researching diets, alternative medicine, and low impact exercise. Lupus has forced me to make some changes in my life, and a lot of them are positive.
It’s Okay to Ask for Help
This has been the hardest lesson for me to put in practice. I love my independence, and I like the feeling that comes with achieving something by myself. I also hate being a burden. When I’m not well, my energy is spent at work, leaving me with just enough steam at the end of the day to crawl into bed and pass out. Because of mast cell activation problems, I’m allergic or intolerant to a ton of foods and have to make all of my own meals. If I neglect cooking, I go hungry. There are times I can’t work and take care of myself, and I have to lean on my husband or family for extra help.
Only Attempt What is Reasonable
I have to limit what I do on weeknights and weekends. If I want to go to a friend’s house on a weeknight, I’ll need extra sleep. If we go to a party on the weekend, the rest of the weekend is spent bundled up in blankets and working on small projects on my laptop instead of cleaning the house. If I’m not well, I may have to reschedule with friends and family.
Stress is Bad — You Can’t Control Everything
If I sign up to take a big project on at work or publish a book, I have to work with my teammates and delegate responsibility. This is what I should have done all along, but I spent years taking on every aspect of a project because I needed to be in control. Lupus has been teaching me that control is an illusion and that it’s foolish not to leverage the talents of people around me.
Choose How You Spend Your Time Wisely
Focusing on a few things rather than taking everything on that comes my way can mean the difference between leading a pretty normal life and going on medical leave. Family and friends are important — work can wait.
Identifying Real Friends and False Friends
It’s hard for healthy people to understand what it’s like to be sick and in pain all the time — especially if you have an invisible illness. I was guilty of this myself before I got hit with my worst flare up. Close friends know I have lupus and that I will do my best to keep up with their functions. They understand when I need to reschedule. Limiting my schedule has caused “break ups” with people who just think I’m grabbing for excuses to not do something.
Each Person’s Journey is Different
I have a rheumatologist and a general practitioner. I also see a naturopath, acupuncturist, massage therapist, and chiropractor depending on what is going on with my body. I’ve done an overhaul on my diet and take supplements. I respect that others don’t feel these things are necessary and prefer to stick with whatever their rheumatologist prescribes them. It is important people trust their health care practitioners. I’ve also been told I don’t really have lupus enough times to know that it feels awful when someone questions a diagnosis. It’s hard enough to get diagnosed accurately by health care professionals. Being told the experts were wrong by a layman who has read an article online is very frustrating.
If I didn’t have lupus, I would have an ulcer, a weight problem, and work eighty hour weeks. I would have focused on my career and let relationships suffer. With lupus, I’ve been forced to take a hard look at my life. I prioritize time with friends and family. I eat well and exercise when I can. This doesn’t mean I’ve given up on my career — I just work differently. I’ve received two promotions in the last two years and I’m up for a third. Booktrope published All the Pretty Bones, and I’ve got more novels in the works.
I am chronically motivated, and lupus is teaching me to focus on what is really important.