SLE or lupus and other autoimmune disorders often have higher incidences of flare ups during certain seasons, and for different reasons. Because of this, summer carries a high risk of danger to lupus and mixed connective tissue disorder patients in particular. Both extreme temperatures and sun exposure itself cause an already unstable body system to really go off kilter.
Because these disorders can impact the heart, kidneys and lungs, it is extemely important to try and prevent further damage to our bodies. Dehydration poses a much greater threat to us, so it’s important to remember to drink 6-8 glasses of water a day, and add other beverages such as fresh juice or refreshing iced teas.
Never go outdoors during the peak heat hours between 12 and 4 PM. Wear a big hat to shade your face, and an SPF sunscreen of at least 40. Learn to heed the signs of impending high blood pressure or kidney problems. If you begin feeling a tightness in your head, accompanied by a pounding pulse and often spots before your eyes, lie down immediately and call your physician.
If you stop urinating, or only are producing scanty amounts of urine, accompanied by intense headache, have someone drive you to the ER immediately. Do NOT try driving yourself, you may black out. As an example, I’ve been having periods of feeling as if I am going to pass out, something I’ve never had before. My husband drove me to the doctor who discovered yesterday my blood pressure is at a very dangerous 170/150. Needless to say it frightened us all out of our wits. When we asked why, she explained the combination of high heat, dehydration and constant pain from the still unhealed ankle breaks had cause my lupus to go into “crisis’ flare.
She, when asked for tips I could share with others, pointed out a few less obvious contributing factors. One is the light/heat from windows unless covered and draped. The damage from sun coming in an uncovered window is nearly twice as bad as being outoors itself. The same applies to flourescent lights. For some patients the UV light causes tremendous irritation for patients with SLE and Sjogrens.
Eyeglasses should be heavily tinted against UV rays. In Sjogren patients, who often suffer from dry aching eyes, the glasses afford them some relief and protection against the sun. Use eye moisture drops regularly to stop the aching, stickiness and burning.
Swimming is an excellent way to ease fatigue and joint pains. During summers peak heat, try going very early in the morning, before 10 AM is perfect, or after 6 PM at night. Walking at a leisurely pace at those times is also a great way to get outdoors for a half hour or so. You might be surprised at how either of these things done two to three times a week, will improve your mood and your sense of fatigue.
Watch out for insect bites or other minor cuts or scrapes. Our systems are hyperreactive, making a small injury something to pay attention to. Especially if you are experiencing a flare up of your disease and being treated with Prednisone, Cyclosporin or other immunosuppressive treatment. Clean the area with soap and water, then lightly cover it with a bandaid treated with neosporin or other antibacterial agent.
Your appetite may be way off. So tempt yourself with small meals made up of fresh organic fruits or veggies, crackers and cheese or toasted english muffins with butter and fresh jam. If abdominal pain and diarrhea develop due to heat stressing, shower, wear something light and soft, and lie down in a darkened room. Take your meds on time, and notify your doctor if they are failing to control your pain or other symptoms.
Living with lupus or MCD doesn’t have to mean you have to avoid having summer fun. Like everything else involved with these disorders, it’s a matter of adjusting your schedule to adapt to the season, and to maintain a positive attitude. Relax, be aware of your body and don’t apologize to anyone for not being able to join in every single activity. And that means not doing things to harm yourself, just because you feel people may see you as lazy or somehow faking it. They don’t walk in your shoes, nor experience what you do. As I learned, much to my regret, is when you hurt yourself because of neglect or someones attitude towards you, you end up paying much too high a price. Enjoy life on whatever terms are safe and comfortable for you.