What’s the Problem?

Secondary conditions have a misleading reputation. If they’re secondary, then they’re obviously not as severe as the primary condition, right? Wrong!

My juvenile idiopathic arthritis is my primary condition. Like many other autoimmune diseases, the arthritis can cause other conditions that are equally debilitating and sometimes more difficult to treat. My doctors have assured me it is common for people to have more than one autoimmune disease at once, too. For me, this all adds up to:

• acid reflux – chronic heartburn, vomiting, chest pain, nausea, gas
• duodenitis – inflammation of the duodenum, which is just below the stomach in the digestive tract, with similar symptoms to the acid reflux but with the bonus of abdominal pain
• irritable bowel syndrome – soupy poopies, gas, abdominal pain, constipation
• chronic urticaria – chronic hives and sun sensitivity caused by elevated anti-thyroid antibodies, which is a precondition of Hashimoto thyroiditis
• type 4 hypersensitivity – delayed allergic-type skin reactions to common household chemicals
• Reynaud’s syndrome – loss of circulation in the fingers and toes in cold temperatures, leading to numbness or pain
• fibromyalgia – a nerve disorder that causes muscle pain, chronic fatigue, and brain fog

All of this is in addition to my active inflammatory arthritis. I actually didn’t realize how long that list was until I started typing it out just now. It’s a doozy. Some of these ailments were caused by my inherent health problems, and some were caused by medical treatments. Some are under great control or cured, while others sometimes eclipse the arthritis itself.
Currently, I’m dealing with some skin problems flaring due to a combination of medication, seasonal allergies, and a severe sunburn. Before you ask, yes, I was wearing sunscreen. However, I did not plan on being in direct sunlight for the majority of the day, and I needed a stronger sunscreen applied more frequently. I saw it coming about halfway through the day. I got hives before the sunburn hit, and then I felt like my skin was literally on fire for several hours until I could get indoors. My skin is now incredibly dry, peeling like a snakeskin, and still red and itchy over a week later. Accidents happen, and now I am dealing with the aftermath. I could have planned better, but I took it for granted that I hadn’t had a skin incident in months.

The fibromyalgia is more subtle, but also a bigger hindrance to fulfilling my daily responsibilities. It flares when my arthritis flares, and it’s not always distinguishable from the other diseases. I don’t always realize I have forgotten something important, and that worries me. Maybe I am exhausted, but is that from the arthritis, fibromyalgia, medication, or stress of living a normal life? I may feel great and go all out at the gym, causing severe muscle pain and stiffness. I then spend the next week recovering and uncertain if the pain is from a tough workout or a real problem. I have even been unable to straighten or raise my arms over my head for up to a week on multiple occasions after an aggressive gym session. I know that is not normal. Is it? Mind you, my aggressive gym session is not all that aggressive compared to my athletic friends. I can’t do a pull-up or run six miles a day. I’m doing good to walk two miles on the treadmill at a slightly slower than moderate pace. I pace myself, and these incidents still happen.

All of this is to say I spend much of my time feeling like crap for what other people see as no apparent reason. It’s difficult to get my day started due to the digestive issues, fatigue, irritated skin, morning joint and muscle stiffness, and occasionally numbness in my fingers and toes. None of these alone is reason enough to take a day off work. Have you ever tried calling in fatigued? It doesn’t work. Have you ever called in achy or itchy? I don’t imagine that going over well with my boss. But here’s the thing: secondary conditions are still medical conditions with real symptoms. I have to treat them and cope, just like a primary condition.

Housework

I am a terrible housekeeper. I live alone, so all of the household chores are mine. I sometimes go on cleaning rampages, but not nearly as often as I should. I make charts telling me when to clean what, assigning each task to a particular day of the week based on the rest of my schedule. The chart is useless when my first flare happens.

If I hurt all over, the last thing I want to do is get down on all fours and scrub the bathtub. I hate doing dishes because the hot water makes my hands swell. Running the vacuum makes the bursitis in my shoulders flare. I don’t cook for myself as often as I should because standing on the hard linoleum floor hurts my back, and standing in general makes my feet swell.

So, I live in a less than presentable home. I rarely invite people over because I know it’s a mess. I get by. I’m not exactly a hoarder or living in complete filth, but my cleaning habits are taboo enough that I keep my apartment closed to the outside world. There is clutter. There are dishes in the sink. There is dust. There is always laundry. Always laundry.

But you know what? It’s okay. Nobody has to live with this but me. The handful of times I have invited people over, they have not hidden their criticisms, so I have revoked their visitation rights. It’s my mess to manage. Sometimes managing is good enough. I can handle the mess when I feel better. When I do, my cleaning rampage will be for my own satisfaction.

Peace of Body, Peace of Mind

Getting in a little more yoga in the hallway before bed.

I mentioned in a previous post that I was looking for a gentler yoga class than the vinyasa class I have been attending. Over the past couple of weeks, I have been to a beginners/relaxation class, my usual vinyasa class, and a beginners/strengthening class. They all have their benefits, and they are all so different. I enjoyed each of them, but I suspect that was mainly because my body was behaving itself. Today, I paid for an eight-week session in the relaxation class, and I am glad I did.
After class tonight, My body felt more peaceful and relaxed than it has in a very long time. I have struggled for months with poses I have previously done for years with no trouble. It was a great reprieve to Get back to basics and focus on getting it right. I could then dig a little deeper if and when I felt capable. When savasana came around, I felt like time flew by. My back was flat on the floor and fully relaxed. In the seven or so years I have been doing yoga, I can count the times this has happened on one hand. After class, I was able to catch up with old friends who also took the class. Yoga, hugs, conversation — what’s not to love?

I left feeling relaxed, not depleted; present, not focused on pain; and rejuvenated, not anxious. I am looking forward to next week’s class. I still hope to get back into a more advanced class eventually. I may pop in to the other classes I have tried from time to time, but I know I am in the right place right now. Reconciling all of my concerns about my body function with the experience that originally drew me to yoga brought me a tremendous sense of peace and gratitude.

Workplace Fashion Tips for the Chronically Ill

When dealing with a chronic illness in the workplace, it is important to keep your style on pointe. Brain fog and chronic fatigue should always occupy your thoughts, making their way into your wardrobe. Looking literally effortless during a persistent struggle to “just get it together” can only help you in your professional endeavors. Follow these six simple rules to present your best self to clients and colleagues.

Shoes are for losers, but socks are for puddles.

Who doesn’t love that damp and cold feeling of stepping out on a rainy day before putting your shoes on over your socks? It doesn’t happen nearly enough for me. If socks aren’t your thing, try heading to work barefoot. Walking across that gravel parking lot with no barrier between your flesh and every little pebble will only thicken your skin for those days when your style is too normal to be noticed.

Matching shoes are so last season. 

Everyone will be looking at your shoes when they see you coming. Make sure they are different styles and colors so everyone will see how trendy you are. Bonus points if one shoe is a heel and the other is a flat. The limp is your own expression of swagger. “Correcting” this look will only make you late for work.

Wear as many items as possible backwards or inside out. 

The “Look, Mommy, I dressed myself today” look is in. Backwards and inside out at the same time is even better. Work it, girl.

Spandex is so slimming. 

Yoga pants, biker shorts, and sports bras in public are making a comeback. What could be more attractive than always looking like you are fresh from the gym? Buy all the spandex!

Trompe l’oeil polka dots are fierce. 

Those aren’t stains! They’re tromp l’oeil polka dots with a balayage fade. The more smeared, smudged, and bled out the better. Spill everything. Only use water and napkins to spread those dots.

Greasy hair is in. 

Your thinning hair doesn’t want to be clean! Showers are the worst time for strands of hair to commit suicide. Keep those locks dry and wadded up in a messy up-do. The more visible oil at the roots, the more luxurious the shine. Dandruff adds to the look. White clumps of dead skin and oil — that’s the ticket to the beauty train.

Work that fatigue and brain fog. Ain’t nobody got time for a put-together look. That’s so mundane. This is your disease, and you should feel confident when wearing it on your sleeve. Go forth and be fabulous with your new fashion tools.