Living With Chronic Illness: How I Cope (And Sometimes... Don't)
Chronic illness is a huge part of my life, and has been for a decade, but lately it's been the biggest part of my life. With chronic illness you go through flare ups, so sometimes you're dealing with major symptoms, you're in constant pain, and your daily task is simply getting through the day and making it to tomorrow. Then it passes, and you're back to being (relatively) normal. Flare ups last anywhere from days to weeks to months, but for me I'd never had a flare up last more than about five or six weeks - until this year. I've been in a flare for the past six months.
There have been ups and downs within this flare, so there are days when I can't get out of bed, and other days when I can get dressed and go out and be part of the world - maybe even socialize like a normal person! But I still haven't gotten out of this flare. I've been in tears because of pain, but also because at this point I just can't see a way out of this, despite knowing that flare ups do end eventually. This is exponentially longer than I've ever had a flare, and morale is low.
There are no good photos for this, so here's Hero in his Hallowe'en costume (He's Godzilla, maybe?). Also, that's my knee brace in the bottom left corner - more on that later!
This week I reached the lowest point in depression I've had for a long time. Before chronic illness I had a total type A personality (this, I have found, is incredibly common in chronically ill people) and I was very motivated by making goals and undoubtedly achieving them. During the lowest points of this flare I can't even depend on reaching a goal of getting dressed, or walking Hero to get coffee. Some days my goal is to wash my hair, and that goal can't get met.
This is a blog about problem solving (it's also about consumerism, but we'll talk about that another time), and right now my problem is trying to feel like a person again, instead of a shell filled with disease. If you found this blog because you are also struggling with chronic illness or disability, welcome! There's a whole category for disability posts that you can find in the menu at the top right, or just click here. I'm also going to include some of my favorite mobility/pain aids in this post. One important note: I have an amazing rheumatologist (here's a post on why I switched doctors) who is helping me through this flare like a champion. I see her every month, but now that we've realized I've been in a flare for six months I'm actually going more often. We agreed that since I'm so miserable we were just gonna throw everything we could think of at this thing and see what sticks, so I'm currently on all kinds of delicious drugs (steroids, multiple anti-inflammatories, and of course, my beloved anti-malarial) plus I'm in physical therapy. So these over the counter aids are helpful, but not nearly as helpful as having a good doctor in your corner.
This flare up has been particularly hard on my hands. I've been having a hard time holding things, typing, using my phone, basically using my hands. These are all tools I've mentioned before, but they're great aids when your hands are just like, "Nah." Arthritis gloves are great for when your hands are aching. I particularly like to wear mine to bed, when my hands tend to ache so badly I can't sleep. I also cannot recommend Ereaders enough to those suffering from hand/finger/wrist pain. Holding a book can be agony, but reading is a wonderful distraction from pain. I personally prefer to use an iPad mini with the Kindle app (added endorsement: My mom is a librarian who does research in ebooks and she says this is the best method, and she's tried them all), but you do you. Last but not least, a PopSocket will make using your phone far easier on your poor little paws. I got one this year and I was immediately like, "Forget selfies - these are clearly meant for people with disabilities!" I've been singing the praises of PopSockets ever since.
My hands are their own little mess, but I've also got to contend with all over joint issues. For this I have an arsenal of braces and mobility aids. Because of my hyper-mobility I have managed to give myself tennis elbow in both elbows in my sleep, so I have these braces for when that pain is flaring up. I also get bad aches in my knees so I have braces for those as well. I like the kind that are just sleeves you pull on - they're easy to throw in a bag in case you need them, and easy to wash. I have two of these and highly recommend them. I also use a cane when I'm having a rough time with pain - particularly when my hip/knee pain is high. I like this folding cane because I can fold it down and carry it in my bag when I can walk un-aided, but it unfolds and is perfectly sturdy when I do need it. It also has a nice pattern that I call "If Anthropologie made canes." Bonus: This cane weighs about a pound, so it's not adding more stress on my achin' bod to carry it around just in case. Also bonus: My cane is from a site called FashionableCanes.com which, I mean, jackpot.
We've covered hands, we've covered all those other achy joints, now for the other things. There are other little bits that I think are essential to Flare Up Survival. First and foremost: A good heating pad. I wrote a whole post on what I think is the best heating pad out there. It's not cheap, but also, it's not cheap. What I mean is, what you get is exactly what you pay for, and you won't regret it for a second.
Next let's talk about apparel. You've gotta be comfy while your body is hurting. With fibromyalgia you experience a lovely condition called allodynia. It is the fuckin' worst. Basically, any touch on your body can feel excruciating. The one that gets me all the time is feeling a little itch, so I go to scratch it, and SURPRISE! Allodynia strikes and instead of feeling the relief from scratching a minor itch I feel like I have been struck by an axe. The point is, sometimes wearing clothes is horribly painful. I really feel like the athleisure trend is one of the best things to happen to chronic pain sufferers - we can look nice but also feel nice! My personal favorite essential is Athleta's High Rise Chaturanga Tights.
So you've got your comfy clothes on and your heating pad is chugging away - you are now essentially one with the couch and things are good. But crap, you have to eat. Listen, when you're in flare up mode, you've just gotta outsource certain aspects of survival. We live in the 21st century and you can get anything delivered to your house, so don't creakily shuffle to the kitchen to eat cereal for the tenth meal in a row or try to subsist on protein bars. Download one of the 700 meal delivery apps on your phone and order some real food and have it brought right to you. The biggest thing you'll have to worry about it getting up to answer the door. My personal favorite meal delivery app is Eat24, because they always have a $2 off coupon and they're the app used by the Thai restaurant that, yes, is 0.5 miles from my home. (I have never been there in person but during bad flares have ordered from them four days in a row. The delivery guy buzzes and says, "Sarah, it's me!")
Last but not least, sometimes you need one task that will get you out of the house and into the world. Listen, sometimes that's just not going to happen, and that's absolutely fine. But sometimes you could go for a little walk, but you lack the motivation. This is where I am grateful that I have a dog and live a half mile from Starbucks. Countless times I have fulfilled my obligation to "just get a little bit of exercise" by telling myself that well, Hero has to walk, and if we walk in the direction of Starbucks I can get a chai, so I'm taking care of multiple tasks at once, AND I get a little treat. However, there was one month recently where I destroyed my budget by relying on this tactic a little too heavily, so WATCH IT.
