When you suffer from lupus everyday can be a battle.

It’s no secret I suffer from a sometimes debilitating disease called lupus. Instead of a casual mention here and there, and an errant whine or moan on FB, I’m going to start a new category called Life with Lupus, because I’d like to document where I am, what I’m doing to fight it, or how I cope with the often daily different symptoms and effects of this zany disease. It’s a roller coaster ride, and the last couple of weeks have had me on a fast dip and I’m struggling to get out of it.

This week’s battle:

{ Get that beauty sleep. }

{ Sleep is good for your skin and your health. Lack of sleep can lead to serious health problems as well as premature aging. }

According to Pamela Weintraub, executive director of Discover Magazine, sleep “is a master regulator of health. A sleep deficit or disruption can create wide-ranging havoc, compromising our immune system, causing inflammation, and damaging our genes. Losing just an hour of sleep a night increases risk of cancer, heart attack, stroke and type 2 diabetes.”

(Click HERE for a list of the different health issues connected to lack of sleep.)

Beauty-wise, lack of sleep can actually age you, says Rachel Grumman Bender, an award-winning health and beauty writer for The New York Post. While you sleep, the stratum corneum, the outermost layer of your skin, repairs itself from the damage of daily pollutants and aging factors like the sun’s rays, environmental pollutants, etc. This layer helps to lock moisture in and prevents germs from migrating into your skin. Skimping on sleep actually decreases the time the stratum corneum (aka your skin barrier) has to repair itself and lock in moisture. The less time your skin has to recuperate, the more dehydrated your skin becomes, and, over time can become saggy and prone to wrinkling.

Additionally, lack of sleep can lead to permanent dark circles, puffy eyes, droopy skin and even worse, loss of collagen. According to Camille Peri and Dr. James Beckerman for WebMD, prolonged sleep debt causes the body to release the stress hormone cortisol, which, in excess amounts, can break down collagen resulting in a loss of skin elasticity. Lack of sleep also results in the body releasing too little human growth hormone, the hormone responsible for tissue repair, bone strength and skin strength (WebMD). Sleep too little, and you disrupt the body’s natural healing cycle, which can lead to premature aging.

I mean, just add those beauty things to the pile of the host of health problems you’re susceptible to from lack of sleep, and you’ve got a serious case for getting those Zs.

Living with Lupus: I have good and bad days. On bad days, I just want to stay in bed.

{ Personally speaking }

I don’t just always suffer from lack of sleep. I often find myself suffering from oversleeping. I sleep 4 hours here, 13 hours there. What results is that my sleeping patterns are messed up, I’m always feeling groggy, fatigued, mentally fogged-up, sore, irritable (sometimes depressed) and NEVER in the mood for sex. So I’m confused. I sleep more than most people (according to Husby), especially on weekends, or when I take a sick day, but I almost NEVER feel well-rested or in tip top shape.

Lately, with my PMS on the rage for the last two weeks, and with the Hawaii Vog (volcanic smog), my immune system has been kicking my ass back and forth.

This is when things have not only taken a dive in my own life, but they’ve taken a huge toll on my family as well.

Marital intimacy can be a problem. I’m either groggy and headachy, or my lower back feels like it’s been hit by a baseball bat several times, or my hands and feet are swollen and it’s too painful to engage in anything more can snuggling or kissing. We haven’t even been able to relax together, giving each other backrubs or foot rubs during our normally scheduled snuggle time, because I’m huddled in a fetal position on the couch or because my hands are swollen and look like Vlassic Dill Pickles. Consequently, we spend different times relaxing, independent of each other, like him hiking two weekend days in a row or surfing, and me crashed out in front of the TV, drinking tea and watching HGTV. Instead of spending time together, growing closer as a couple and bonding as we should be, we’re spending time on our own, with only one of us feeling enriched and fulfilled as a person (i.e., him).

Some days, the pain is unbearable, and it’s easier said than done to pick oneself up by the pantlegs and get the heck up.

This, of course, confounds, hurts and frustrates Husby/N to no end. He wants his wife in tip top shape and he can do nary a thing to fix it (typical male response). And he wants his partner to be the person that she was before all this pesky disease stuff got in the way (note: I was diagnosed 7 years ago). Not only do my health problems and mood problems get in the way of a physical relationship, they get in the way of me being a proper partner to a very overworked husband. It takes me a week to fold several loads of laundry and put them away. I put off vacuuming the house and cleaning the kitchen. I can’t clean the bathtub without twisting out my back. I can’t sweep or dust or mop unless I set aside a whole afternoon so that I can do it meticulously and slowly, so as not to incur or trigger a flare. Simple things like keeping the house clean or snuggling on the couch can become sources of pain for me, and sometimes I avoid them altogether… which makes me kind of like a deadbeat wife without wanting to be.

A lot can be fixed if I could just get my sleeping patterns back into better form. I’d probably flare up less, have more energy, have some libido (please, God), remember more stuff (yes, please!), lose the tummy pooch (seriously!), be less irritable (miracle) and all-over generally more youthful and bubbly. How can I do this? Oh, God.

I see more of these than I care to admit, as a lupus survivor. If I can learn how to get my sleep problems under control, maybe I could visit the doctor less.

{ In Practice }

Here are some things I’m going to try to get my sleep cycle back on track:

• Give up caffeine. Just say no to that coffee.

*I did it once for a year before our wedding, and I felt amazing.

• Exercise more.

*I felt amazingly well and recovering when I was doing pilates-based physical therapy twice to thrice weekly (a two month prescription that ran out in December). Now that I’m left to my own devices and meant to do these exercises at home, I’ve found my exercise regimen has fallen by the wayside and, as a result, my joints are not happy campers. I need to stop being so lazy/mindless about exercise–specifically when there are workout routines particularly created for core and joint strength!
*I’ve tried to incorporate more activity into my day in small ways here and there so I am not stressing out over one hour long workout session if I miss it. I climb the stairs to my office three to four times before going in, or I make a point to climb the stairs in sets of 4 over the course of the day, to have a total of 16 flights of stairs climbed. I walk laps of a store before shopping, and I park my car at the far end of the lot so I have to get more walking in. I park my car in between places when I have to run errands, so I have to walk back to my car across the lot before I go to the next spot. When I go to lunch, I park at the far end of the parking lot far across the mall and walk to my lunch spot to get my food, so I’m throwing in more steps that way.
*I set an alarm every 5 minutes before the hour to get up, stretch for two minutes and do some plank ups (push ups from a standing position against a wall) and squats to stretch my core, so I’m not building up fat tissues in my legs from sitting too long.
*Am I disciplined? Not really, but I’m trying.
*If only I could make myself wake up and do it in the morning.

• Eat less processed food, fewer animal-by products and more fruit and veggies.

*Doubtless this would be much better if I ate breakfast. But kicking the cheese and pizza habit may help by body combat inflammation much better.
*Lunches usually consist of huge salads as big as my face with tuna salad, carrot sticks, whole grain toast with jam, celery sticks with peanut butter and some hummus. Occasionally, I’ll have a piece or three of cheese along with the above. Once a week or so, I binge and eat from the hot bar at Whole Foods across the street.
*It’s when I eat out that I eat like sh*t or forget that my body hates dessert.

• Eat most of my food for the day prior to 3PM.

*Gotta stop eating those huge dinners. My Diet is so back loaded… I always eat my heaviest meal at night, which is backwards. And I almost hardly eat breakfast.

• Put a nightly moratorium on technology 1 hour before sleep.

*This will be the hardest to kick.

I’m sure there’s other stuff for me to try, but I need to start small and manageable and snowball my way to the next thing I can accomplish.

It’s really eye opening, learning about how sleep affects your health, and how lack of sleep can worsen auto-immune symptoms. If you’re like me… you should know that proper, restful sleep is pretty much your best friend.

Do you suffer from an auto-immune disease or condition, or do you have some condition that has really taken a huge toll on your personal life? If so, let’s share. Nothing helps recovery more than a community of people who empathize and can help encourage each other where the lay person can’t always truly understand, even if they want to.

Rock on, Lover!
Me ke aloha ~ With love + aloha,
Mae Xx

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