Let’s talk about AS, baby, let’s talk about its effect on me, let’s talk about all the good things, and the bad things, and what will be, let’s talk aaaaboouuuut, AS, let’stalkaboutAS! Ankylosing Spondylitis. That’s what AS is. I was diagnosed formally 17 ago years this March. Posts about sickness, fatigue, struggle– they’re not very popular, they’re not that interesting really, particularly to anyone but the sickee, I know. But I have had people ask, people close to me even, who ‘know’ but really don’t know. I’m not sure that I should really care about the people who’ve been judgy, and probably talk about me behind the facade, but while I don’t (really!), and I’m enjoying that freedom (really!!), I am also a pretty open person. I don’t hide the yard. I might not invite you into the back drawing room or the bedroom, because privacy is ok too. But like I said– I’m not a recluse either.
Ankylosing Spondylitis is spinal fusion disease. It also attacks your connective tissue, basically destroying it. It causes inflammation, pain and stiffness in your shoulders, hips, ribs, feet, heels, achilles tendons, and hands. It can (rarely) move into your eyes and cause blindness and more rare, affect your heart and lungs. Let’s talk about what it’s really like to live with it: real talk? It sucks ass. It makes you feel, when you’re in a flare, like you have a terrible case of influenza. You live with chronic fatigue. Forget about your prior definition of what ‘feeling good, Lewis!’ is. You probably will have less than 10 days a year where you actually ‘feel good’. You at once both look forward to and dread bedtime, because you’re normal and need sleep (actually probably extra sleep) but when you lie down you feel all the aches and pain in your body, that you’ve ignored all day because you are able to distract yourself with stuff to do; when you wake up, if you’ve had the very rare night you haven’t woken up a million times and/or lied there for a couple hours, you feel like you’ve been working out all night and you’re exhausted and stiff. Like, really stiff. The stiffness is something you learn to laugh at, because you have to, it’s the giant monkey on your back–although you become very self-conscious; you hold on to the walls when you get up to walk to the bathroom, worse at night but even watching TV. You get up at a restaurant and always stand for a moment, pretending you’re fixing your coat, because you know you’ll stumble stiffly and appear drunk. You learn that there are some things you can avoid, but just when you think you’ve figured out triggers, you realize it’s haphazard and you just have to fly by the seat of your pants 99% of the time. You can crash and burn in a matter of hours– you start to feel good in the afternoon but by dinner, it’s over. You are extra clumsy, because your joints don’t respond in quite the same instant manner as someone without AS, so you fall and trip pretty much on a regular basis. You learn to suffer through side effects of meds. You take a low-dose chemo that in the beginning, isn’t too bad, but 17 years in, you have to sacrifice an entire day out of the week to it’s after effects because long-term chemo still acts like chemo– nausea, headache, extreme fatigue. So you look at your week ahead and try to pick which day you want to feel like crap, and is it going to interfere with things you have to do, and should you skip this weeks? ( cough, and you may end up screwing yourself out of the necessary levels to help because DAMNIT YOU HAVE SHIT TO DO!) It’s not a vague diagnosis, at least. There are definitive tests for it, for the most part, ANA, HLA-B27 gene test, etc. Also, progression of fusion of the hip(s) and spine can be tracked with MRIs and xrays.
But you don’t look sick. For the first 15 years of my disease, I didn’t. I didn’t act like it either. The first years were spent in denial. I was young, strong still, stubborn. I was also on some major drugs but I continually argued with my rheumatologist that he was wrong, I was fine, it was just a virus I’d had. Hahahahalolololol. I also cleaned up my diet, started lifting weights in my early 30’s, and was in general a pretty happy, contented person with fairly normal stress levels, or so I thought. After a major infection I was able to go off of the big gun biologic drug and maintain for a long time with diet and exercise. I rarely felt ‘great’, (and mornings have always felt like I have the flu every day), but I felt ok and I learned that powering through it, I usually was rewarded with feeling better after a run/exercise. I learned if I waited for a day that I ‘felt good’, I’d never do anything, but that if I got after it, I actually felt better overall. I also had some pretty good suppression going on after the biologic for a number of years. By 2016, it was getting a bit tenuous but I was staying on the back of the horse; then the nuclear explosion went off that pretty much cratered my life as I knew it. By that I mean my daughter’s descent into full-blown heroin addiction and my prolonged separation and divorce after a marriage that spanned over two decades.
The thing about stress is, you don’t really appreciate the effects of long-term stress right away; it, well, it takes a long time. You ‘think’ you’re managing your daily stuff ok, but maybe you are, maybe you’re not. I had a shoulder surgery that didn’t go as expected and really took me out of the exercise loop, I wasn’t as regimented about my diet (I mean, when your heart is shredded and bleeding out daily, you don’t necessarily want to go to the store for egg whites, spinach and olive oil daily either.) It’s not like I was eating fast food every day, but I definitely relaxed on the stuff that tends to aggravate my arthritis. It was a perfect storm: stress, less physical activity, diet changes. Suddenly you’re in a full-blown raging flare that won’t calm down. My orthopedic surgeon (whom I know allll toooo well) read me the riot act after seeing the damage uncontrolled inflammatory disease had done to my shoulder. My rheumatologist kept badgering me about starting another biologic. (There are many reasons why I did not want to go back on one. They increase your risk of cancer by 6 times, they leave you incredibly susceptible to infections that are very dangerous to you then, they make you gain weight. Um. I’m a runner and a backpacker. Strap on a 25lb pack and go running and tell me what you think about that.) I appreciated their concern but figured I could still control it with diet and exercise until I saw the results side by side of MRIs of my right hip joint from 2003, 2014, and 2017, and my rheumy finally started to get through to me. My hip went from 0% fusion, to 13% to 84%. From 2014-2017 it fused 71%. This October, my dr did more imaging, and sat me down. It was almost 94%. My surgeon informed me that I would be in a wheelchair by the time I was 60, and wouldn’t be able to even ride a bike by the time I was 55 if I didn’t listen. (As I just turned 49 in November, this caught my attention I must say.) Someone said to me, “The war is over, you’ve won that. Now you must win the Peace- that’s the hard part.”
But you don’t look sick. I didn’t, really. Not to people who don’t know me. To people who do, the ones who love me, the weight of chronic pain is apparent. I’m irritable. I’m so tired all the time. I’m a broken record of “I’m tired”. As someone with an intense love for the outdoors, and running, it appears I’m so much healthier and fit than many people, especially my age. But if you look close, you’ll see that it’s so much more of a struggle than it used to be. This isn’t ordinary aging; not to mention, that the old axiom “Use it or Lose it” is very true. This isn’t that. Backpacking and running are the great teachers of Suffering. It’s really about how well you suffer, I often joke. I’m used to suffering. In that capacity (backpacking and running, although most of the long-term runners I know are same), I do know that I have a much higher tolerance than many. But without the relief of days here and there without pain, you start to understand why your rheumatologist was so insistent. You invest in disciplined diet, consistent exercise, you take the long view. But my reliable old tools were suddenly not delivering the way they used to. My doctor implored me to do everything I could to focus on stress relief and getting my foot back down on this disease, to hopefully achieve remission for awhile again. And here, is where the going gets hard. But you don’t look sick. People have never heard of AS. They don’t understand how someone who’s been so apparently healthy for so long suddenly is sick enough to need sick time. And like, don’t even get me started on the running, the skiing, any type of outdoor activity or trip. Or actually, yes. Let me get started on this. That’s why we’re here, innit?
As a society, we don’t understand chronic disease. We think every handicap or health issue is/should be visible. * (see note) And people who change jobs, stop working or do something in that vein as a result of that disease, and then dare to do something physically active— why, what the hell? What gives? I’m mean, you’re sick, right? If you’re sick, you’re supposed to stay home incapacitated on the couch, calling your maid to bring you soup and soda crackers, you absolutely are not allowed any type of joy in your life until you are better and can return to the drone assembly line. We all know they’re just scamming. Fakers. I mean, I’m working, and I can’t do that, how can they stay home but still be able to run 5 miles? I’m healthy and I can’t run 5 miles 3x a week! How can she go backpacking and claim to be sick? Well, Friends, Romans, and Countrymen, here’s my answer: There is a big difference between working an 8 hour day, 5 days a week (we won’t go into jobs that require people to be on their feet all day, or jobs that are physically stressful, such as laborers or people in the nursery -horticulture, etc- business, nurses, retail, etc) and going running for 45 minutes a few times a week. Or skiing once a week. Or backpacking something not too hard for a few days. See the difference? And imagine feeling like you want to die on the couch all day long, 23 days out of 31, knowing you need to physically be active or you’ll rust like the Tin Man on a wet Georgia spring day, your disease will continue to destroy you, you MUST GET UP AT THE CRACK OF DAWN TO EXERCISE BECAUSE WE ALL KNOW IT HELPS but you have to work from 8am to 5pm, and you know it will kill you physically? Or conversely, you tell yourself ‘ok, I’ll do it tonight after I get home’ because you slept maaaaybe 2-3 hours last night, but you are completely wiped out after 9 hours at work. Never mind that at some points, just exercising will exhaust you to the point that’s all you can do that day; and you know, that strengthening your muscles will help you avoid an artificial shoulder before you’re 50, but fuck, you know it’s going to take everything out of you. This is where as a society, we fail. Whether it’s from suspicion, our own fatigue, or just the fact that we rarely spend that much time actually considering others as we do ourselves, we don’t view unseen illness as ‘real’. Especially when it’s a whatthefrickingweirddiseasedidyousayyouhave type of illness. (*Disclaimer: I’m really addressing physical illnesses here, the world of mental health and mental disorders/diseases are a whole ‘nuther ballpark, albeit mirror imaging, in terms of most judgments.)
You don’t look sick but I know your disease. The other side of that coin, is, well, thank god if you have a disease people know and understand, even a little bit. Cancer, MS, Lou Gehrig’s, Parkinson’s….at least these are names circulated in public discourse, that most people are familiar with. It’s the unfamiliar we always suspect. I don’t include arthritis in that, because arthritis is this umbrella term that really doesn’t say shit. Lots of arthritis is age or use-based. Some of the symptoms are similar (joint pain, swelling, aching in the joint) but auto-immune based arthritis is where your own body causes the damage, because it attacks itself. It doesn’t recognize its own tissues, cells, as part of the friend zone, it thinks they’re intruders. It causes the systemic fatigue and pain. It’s fighting a war every day inside while you’re just going about your business trying to pick which lane is going to move faster in the daily commute traffic. (Fun Fact: the weight gain from inflammation alone, and it’s symbiotic relationship to water retention can cause one’s body weight to vary as much as 6lbs a day, and it has nothing to do with diet or ‘drinking enough water’. If I had a fucking nickel for every person that told me to ‘be sure to drink enough water!’ I’d outspend Bloomberg in the quest to defeat Trump.) Anyways.
As for me, a person that has always lived for outdoor adventure, who’s found solace and strength and medicine in running and backpacking, hearing someone say “Maybe you’ll just have to give all that up now. Maybe you can’t do it anymore” is just. so. irritating. Why? Why should I accept that I can’t continue to be physically active in the ways I want, especially if I have the option (or not option, if you’re my rheumatologist) of focusing on *gasp* my health? Why should I go the American Way of the Couch? Most people do, they gain weight as they age, they ‘can’t do that anymore, my knees are bad’ –news flash, lifting weights and keeping your muscles strong to keep your joints functioning properly goes a long way, and psssssst I haven’t had really any cartilage in my left knee for oh, about 7 years now, and that is the LEAST of my issues– and you know what? That’s ok. FOR THEM. Not for me. I hardly feel that 49 is the age to be sent out to pasture. You know, what they do with racehorses, when they retire them from racing. (I mean, my dad is almost 90 and recently, when I called him ‘old’ he bristled. I said “Dad. I mean, you kinda are. If you’re not, what age do you consider old?” His steely reply was “I don’t know. I’ll let you know when I get there”. Ok then.) First off, imho, that’s the surest way to stop feeling better; fitness is always better than sedentary, it’s proven that exercise helps joint disease AND mental health. When your days are spent under the cloudy grey skies of constant chronic pain and fatigue, even though your backpacking trip (or ski trip) might take every single drop of your energy, and leave you utterly spent, the mental relief, the joy you experience is why you get up the next day and continue on. It’s the bright spot in the clouds– the sucker-hole, as my partner likes to say. It makes you believe that one day, the clouds will blow out for awhile.
And my life is my life. I don’t tell others they should lose weight, get fit, etc. I don’t and will never understand why people feel the need to tell others how they should live their lives, if it’s not hurting them. Most things we do as individuals don’t hurt others (obvs not talking about armed robbery or assault here, or dousing yourself in a gallon of perfume before you go to a packed movie house). If I want to focus on the viability of my body, and forego the rat race of pursuing the almighty dollar so I can have a big fancy house and lots of toys and such at the expense of that body, so what? It’s just less competition for those who want that. Is it subconscious anger, not understanding? What fuels the snarky comments “Oh well. You’re sick, lololol, but you can still ski?” :dramatic eyeroll: Even from people that are supposed to love you and support you– my ex-husband, who lived with me for most of my disease, never really believed, even though he went with me to dr’s appts, to Seattle for specialists, he saw the tests, saw the effects, saw the meds (um. They don’t just put you on low-dose chemo because you ‘say’ you don’t feel good.) I think some of that is because I’m stubborn. I pushed through a lot of pain and stiffness because I wanted to. I didn’t want to admit I was sick. In the one bit of kindness to myself, I admit: I do the things I want to because I refuse to give in. I refuse to admit defeat. It’s probably a little bit detrimental, at times, but I have learned and I do modify my activities a bit now. Because I have to. And frankly, honestly, I have had many days the last 6 months where I DID want to say fuckitall. Where I did want to just. lie. down. and. stop. trying. But I rested more than ever the year of 2017, partly because of surgery, partly because I was drowning in the despair of my daughter. And it didn’t help. It made me worse. I wished for all the things, that year. Some of them came true, in 2018. But mostly, the thing that I wished for, I still wish for, would give anything for, are those bodies getting wasted on the couch. That aren’t at war with themselves, that only require getting up and getting used, that don’t try to kill you with fatigue and chronic pain every day. How I would love to live in a body that I can use and enjoy most of the time. “Excuse me, I’d like to return this body? It’s malfunctioned well before it’s life expectancy” Everyone deals with fatigue and few haven’t had something. But I would give my firstborn (sorry Hal, it’s been a good run, proud of ya, you’ll be fine) to have even a week –hell, right now, I’d take an entire day– where I didn’t feel like I have influenza and my body’s been hit by a mack truck over and over. I’m fighting the good fight– going to bed early, exercising, eating very mindfully– when do I crest the hill? When does it start to ‘kick in’? When do the meds get control, and how much of my life do I have to sacrifice to them? (Full disclosure, if you’ve even read this far, the latest med adventure has had the lovely and delicate side effect of constant diarrhea, combined with a colon that feels like the Royal Fireworks are being played all day long and all you can eat is plain rice. Sweet!) It’s been months. Seriously, months of really, truly, trying, including meds. I’ve lived with this for 17 years. I ain’t new to the game. (I’ve pretty much accepted all there is to be accepted, but dang, Universe.) If you look at me–or someone like me– and make an underhanded comment regarding ‘how lucky I am’ to ‘be able to do this stuff’, please know that it’s my fear of uncomfortable jail beds and lack of windows there that keeps me from violent response (I kid, but come on man, only about the jail part. It’s really usually the fact that there are witnesses.) I might smile at you, but my kids can tell you I can kill you inside over and over with just one look.
Life goes on, for all of us. I certainly know it could be worse. I am actually grateful in many ways for the lessons I’ve learned from this disease. I’ve learned about choices, and what I really find important. I’ve learned we, and we alone, choose what is important in our lives, when we can’t fit everything onto one plate. We have to decide what we want on that plate, why should/am I putting what you want or think should be on my plate? Why aren’t I putting what I want on my plate? On my plate, I’ll take the outdoors, pleaseandthankyou, because if you’re going to be miserable anyway, might as well do it with a beautiful view.
