When you have disabilities and illnesses, you inevitably get people asking how you live with them. The short, pat answer is one day at a time, and there is some truth to that. The longer answer is what I’d like to address today.
For me, at least, each piece is different. Some you just make little adjustments for; some re-work your world and change everything. Some you hardly ever think about, while others require your attention on a daily basis.
Now, I’ll be frank with you, the list of things that don’t fit the norm with my body is pretty extensive. I don’t have a single system in my whole body that is unaffected. I’m not going to go through all of them because it would take forever.
So let’s start with a relatively common one: asthma. I developed asthma when I was 12. At first, it was relatively mild, so it was just annoying. Sure, I carried an inhaler at all times, but I really only needed it if I was running or swimming hard. When I was 15, it took a sudden turn for the worse. That was when it became terrifying. I remember the first attack that sent me to the hospital. I remember my mother calling the nurse’s line at our health insurance to find out what we could do. I remember them setting me up so I was laying back at a 45 degree angle on the couch and having a humidifier blowing moisture into my face, which only made it worse. I remember getting woozy because I couldn’t breathe. I remember my chest hurting. I remember the tense ride to the emergency room a few blocks from my parents’ house, where they gave me a breathing treatment. There are few things more frightening than the first time you are almost completely unable to breathe. It hits you at a visceral level, it makes you…it makes you fear death is stalking you. I also remember my first coughing-type asthma attack, where with each cough my lungs tightened further. I remember the asthma attack at the Girl Scout camp up in the mountains, where I had to hang on for 30 minutes as they drove to the nearest hospital, desperately hitting on my inhaler and trying not to panic because panic only makes the attack worse. Of all my conditions, asthma may be the scariest, because when it hits you are completely at its mercy until you can get a breathing treatment. You live with it by always being prepared – taking your inhaler with you everywhere, and if you have a preventative, taking it every day. You live with it by knowing where the nearest emergency room is. You live with it by having people in your life around you who know you have the condition and who help you when it hits. You learn breath control and breathing techniques that help you to partially control your asthma attack with your mind. And you live with the fear, this little dragon coiled ’round your heart, ready to squeeze when you feel a little wheeze in your breath or something makes you cough, that tension when you see someone smoking and know that might be enough to set you off. I mean, you get used to it, because it’s always there. It gets less scary, and the attacks are no longer terrifying but more a nuisance. You don’t think ‘Oh god, I can’t breathe, I can’t breathe!’ on your thirtieth severe attack, you think ‘Damn it, off to the ER again, I hate this shit!’
Asthma is one of the hard ones because you know that it can kill you and fast. Hell, it can easily kill you, if you don’t manage it aggressively. When things are good for a long time, your vigilance slackens a little, until that time you get a little wheezy and realize you don’t have your inhaler. Hopefully, it’s a small attack that reminds you to keep your inhaler around; my pediatric asthma specialist told me a story about a friend of his who died because she didn’t have her inhaler on her person and she didn’t get to the ER fast enough.
It’s a strange balance, between the nuisance and the fear. Nowadays, I only get scared by my coughing-type attacks, partly because those tend to be far more severe. Even those, it’s just a case of getting headed towards an ER as soon as the coughing starts, because I can’t stop them without a breathing treatment. The other attacks, I just get annoyed. I know the likeliest result is that I’m going to be stuck focusing on my breathing for the next half-hour, and not being able to do anything else.
Let’s go with the big one – Ehlers Danlos Syndrome. To be perfectly honest with you, it varies wildly how this one hits you. I have a moderate case of EDS, so I can’t really describe what it’s like for people with more severe cases. I was born with naturally very tight joints, so it took longer for EDS to really damage my joints.
You don’t think much of it when you’re young and relatively healthy, and thus undiagnosed. It doesn’t affect you much then. Sure, you get injured more often than other people, and sometimes in ridiculous ways, but it’s not something that really sticks out all that much. People just think you’re a clutz, and for that matter, you probably do too. I sure did! It was strange, because when I was focused on what I was doing, I had unusual precision in moving, but as soon as I wasn’t in that extremely tight focus, I started banging into tables and such.
EDS is mostly a nuisance. Dozens of braces I’m supposed to be wearing at any given time (finger, wrist, elbow, knee-and-ankle-and-foot). I hate the way it makes me stand out – there isn’t really a way to hide braces that run from the middle of your thigh all the way down to the sole of your foot. Nor can you hide braces on your fingers, unless you wear gloves, which would make you stand out even more. (I am thankful that I have the relatively pretty finger braces – I know some people are stuck with ‘fleshtone’ plastic, while I wear much more slender bands of silver.) I hate that I can’t carry my own groceries. If I go grocery shopping, I have to get someone to help me out to my car and have someone at home to lug them in. I can’t even pick up a gallon of milk without hurting myself.
I hate that my hips and shoulders sublux at the slightest provocation, and that we haven’t been able to effectively brace them. I hate the pain that comes from all these injuries that have happened over and over and over. I sometimes feel defective. I often feel broken, hence the title of my blog. Certainly dysfunctional! After all, I can’t function in the ways I used to. I don’t usually compare myself to normal, but I do compare myself to younger Kali. The Kali who danced 12 hours a week. The Kali who went to grad school and carried an overload on classes. The Kali who liked strength training at the gym. Even younger, the Kali who loved to play soccer. The Kali who drove an hour and a half to go shooting (archery) twice a month with her friend, and shot for hours. The Kali who could hand sew like lightening. The Kali who wore high heels. Kali the swordfighter and fencer. I miss being that Kali.
Some of living with EDS is embarassing. My bladder leaks, so I have to wear pads all the time. It’s frustrating – it isn’t the typical kind of leak people have, where a few drops escape when they laugh or sneeze. That kind, you can do exercises to strengthen the muscles. Mine just seems to be this light, constant dribble. When I have to use the bathroom, it usually hits suddenly with a great deal of urgency, which means I have to abruptly break off conversations to run to the bathroom. It’s also embarassing to be a twenty-something who has to ask people to carry her groceries to her car and ask people to give up seats on public transportation and use a scooter and park in the disabled spaces. I’m mostly okay with it, it just twinges when people look at me like there is something wrong with me for needing assistance. It embarasses me and it makes me mad, because what the hell do they know? Who are they to assume that everyone who looks ‘normal’ doesn’t have some kind of disability? Who are they to judge me? If my doctor is willing to sign off on disabled plates and placard, who are they to think I don’t need it?
Onward, next disability: POTS (Postural Orthostatic Tachycardia Syndrome). This one has been extremely hard for me, in part because it kind of comes and goes. There’s a baseline that’s always there, that makes me extremely sensitive to temperature and even mild dehydration. It’s annoying, especially when I go somewhere that doesn’t allow me to bring in water and I have to pay a fortune for drinks. I often get a bit light-headed and dizzy when I stand up, and I have to hold onto something until it passes. I suppose it’s a little embarassing, especially when people freak out because I abruptly sit down in the middle of the office to avoid falling. Mostly, in that stage, it’s managable, as long as I can avoid heat and keep fluids in me. When it gets too hot, or I get too dehydrated, though, it’s…well. It’s unpleasant. One of the first things to go is my ability to think coherently. By the time it physically shows that I’m not okay – when I turn scarlet and collapse – I often can’t even explain what’s wrong to people around me. “I have POTS” doesn’t mean anything to most people, and it’s about the limit of my explaining. I can sometimes manage to tell people that I’m too hot, or that I need water, but not always. That’s the scary part of this condition – I can’t really take care of myself when it causes problems.
But then there are the flares – in the flares, I can’t sit up without medication, because it makes me so dizzy, and I get headaches. When I’m in a flare and it’s bad, I can’t walk without someone holding onto me, supporting some of my weight and keeping me from falling. I get stuck in bed because sitting up is impossible. I fall asleep. I can’t remember anything, and get nonsensical. Part of what has made this post take so long was the tail-end of a POTS flare.
And that’s not all the symptoms that come with POTS. I get random episodes of tachycardia, where my heart just starts RACING, racing so hard I stagger and lean into a wall or fall. I get occasional extra venticular beats, which feel like being kicked in the chest.
POTS is, to me, one of the hardest to live with. It’s not predictable, and I have only so much control over it. It traps me in the house when it’s hot, and stops me from being able to tolerate much less enjoy what was once my favorite season: summer. I miss the days when the glowing warmth of the summer sun was pleasurable, was an excuse to break out little strappy summer dresses that made the boys stare.
Next up, migraines. Migraines are a royal pain, and somewhat dangerous. They creep on, slowly increasing pain until that’s all there is. All my senses become jagged spikes of pain, and I need to close myself off to as many as possible – I need to lay down on smooth sheets and a soft bed, in the dark, and quiet. I usually end up putting on a blindfold in addition to being in a dark room, because the dark has to be absolute. I turn on a fan to provide a constant noise that smoothes over the serrated teeth of other noises. I’m nauseated, and unfortunately the migraine medication is a nose spray. Postnasal drip means it ends up at the back of my mouth, and it is incredibly, horribly foul tasting. Not a good combination with the nausea (and dizziness) that are already swelling up. Sometimes I throw up, especially with the more painful ones.
The complex migraines are even worse. The pain is indescribable, and is bad enough to make me vomit over and over again. I hurt so much I want to whimper and sob, but the sound and motion of those make the pain even worse. Sometimes it gets so bad that I can’t stop myself, even though I know it’s only making things worse. Lights blur into giant stars of blinding light, like a sunset on a smeared windshield. Sometimes my hands twitch. I lose spots in my vision sometimes. This is when the migraine gets dangerous – I can’t transport myself, by driving or by public transit. I often end up in the ER because I can’t stop the pain with the migraine medications I have and I need IV pain medications. For those of you who know your opioids, morphine usually isn’t strong enough; I usually need dilaudid if it’s one of these vicious beasts. For those of you who don’t know them, I need the STRONG stuff. The stuff they normally give you when you come in in extreme pain? I sometimes don’t even feel it.
With migraines, you live knowing that you carry around this mostly quiescent beast that will occasionally turn and rip into you. If you’re lucky, you have triggers you can avoid, foods or smells or lighting effects that you can avoid and prevent the migraines. My main trigger at this point is tension in my neck and shoulders, which doesn’t sound all that bad, but I’ve been in 6 car accidents, partially torn a muscle that connects the shoulder to the neck, and have dislocated both shoulders frequently. I have chronic problems with the tension in all of the muscles in my back, neck, and shoulders. Sitting in a less-than-comfortable chair for an hour can trigger a migraine if I don’t keep shifting and stretching.
GERD + IBS. Ooh how I hate these. GERD is gastro-esophogeal reflux disorder, which basically means that there isn’t as good a seal at the top of my stomach as there should be. I take an acid-blocker to help with this, but it’s not enough on its own. I have to mind what I eat, and I’ve had to eliminate caffeine except for chocolate (which I couldn’t bear to get rid of). If I have a greasy meal, I have to be good for the next day and a half at least. I can’t manage really spicy meals anymore, which is a shame because I love me some spices. And when I say spicey, I don’t just mean heat – I also mean pepper and cinnamon and whatnot, because they’re hard on the GI system. The other issue with the acid-blockers is that I have an astonishing ability to acclimate. I get an average of 6-10 months per drug before they stop working well enough. Right now, I’m probably at the end of a drug. It’s scary, because I’ve gone through all of this class of drugs. We tried moving me on to the next alternative class of drugs, and it was far worse than the failing drug – I felt like my stomach and my esophogas were on FIRE, and I kept vomiting small amounts.
Then there’s the other half – IBS (irritable bowel syndrome). Caffeine makes me have horrible cramps, if I have much at all. Hell, I get horrible cramps for no apparent reason – they just strike all the sudden, and BAM I’m curled up in a ball because it hurts like you wouldn’t believe. Spices will trigger that, too. Appalling amounts of gas, which is of course embarassing. Diarrhea and constipation. I rarely get that sense that I should go to the bathroom soonish – it’s always NOW NOW NOW. Very inconvenient when you’re travelling. It hit on the road at one point, when I was maybe 10 minutes from home, and I thought I could make it home. Um, well, let’s just say it didn’t work out that way. I pulled into a fast food place that I sometimes ate at and cleaned myself up as much as I could. (Worse, I was on a date – he was following me to my place, where we were going to have tea and snuggle. It was probably our third date. We got to my place and I told the now boyfriend that I was sorry, I needed to shower RIGHT NOW and I understood if he wanted to leave. He was still there when I got out of the shower, and wasn’t phased when a very mortified Kali explained what had happened.)
I also have Raynaud’s. Raynaud’s is basically an extreme sensitivity to cold. See, when your body gets really, REALLY cold, it starts closing up the veins in your extremities so that your blood stays in your core. It’s why people get frostbite on their extremities mostly. My body starts doing that sort of thing at much milder temperatures than most people’s do. It means that I tend to have corpsicle feet, waxy pale colored and cold. My hands also do it, and my nose and ears. And don’t get me started on how incredibly painful it is when it hits your nipples. (Our bathroom is really not insulated enough, and this was before I started using my little space heater to warm it up in the winter…) I suppose when it’s cold out, I’ve also had it hit on my butt, where it’s not covered by my jacket. This is one that is mostly just a nuisance, where you have to be careful to bundle up properly and gently re-warm things that have gotten too cold. It’s uncomfortable, sure, and sometimes even painful. It’s a little embarassing. It’s also made the boyfriend almost jump out of bed – I curled up against him and my foot hit his shin, and he JUMPED.
I’ll finish up with the last big one: mental illness. I am bipolar, not certain which type because I was originally diagnosed type II but started having symptoms more like type I a couple years ago. I also have PTSD and panic attacks. The three end up kind of interwoven, with each affecting the others.
The primary piece is the bipolar, though. Looking back, I’ve probably had it since around puberty, which I understand is pretty typical. I was diagnosed at 17; I suppose it would be more accurate to say I self-diagnosed and had it confirmed by my therapist. I was taking a psychology 101 course, and we addressed abnormal psychology for I think two weeks. I read the description of bipolar and went ‘oh my god, that’s ME! Except that I don’t get angry like it says in the book.’ My therapist said that it’s because I’m type II rather than type I. The thing about bipolar is that essentially your emotional state is a tightrope walker. It’s easier for us to be pushed over into exaggerated agitation and exaggerated depression by life events, and sometimes they just happen without triggers because it’s a chemical imbalance. The depression is the harder part, for me. You just feel…stuck. Tasks feel far larger than they really are when you look at what needs to be done, and far smaller than they really are when you look at what you’ve accomplished. It’s hard to feel inspired to do anything. Hard enough to make yourself do the things you love; nigh impossible to make yourself do things you don’t like. You feel so insignificant, as if nothing you can do makes a difference, nothing matters, why the hell are you trying? Don’t you get it, you don’t matter! It’s very hard to get out of. It’s like being in the bottom of a pit with a shovel and trying to get yourself out of it. If you do what’s natural with a shovel and just keep digging, all you do is get deeper. You have to make yourself try to dig one of the sides into a slope you can walk up, and you deal with collapses and sliding and losing your footing and ending up back in the bottom of the pit. Often, you need a rope lowered to you – therapy and appropriate drugs.
Mania is harder to explain. First, let me say this – there are two levels, there’s hypomania and ‘true’ mania. Hypomania is often not uncomfortable to the person who has it. In my case, I get hyper-focused and goal oriented, and work for 8 hour stretches without remembering to eat, find myself looking up from my work to see I should have been to bed hours ago, sleep 6 hours and bounce up like I’d had my usual 9 hours. That’s what I had as an undergrad, and it wasn’t really all that bad to deal with. I got a lot of things done, and if I occasionally prioritized creative things over academic things, well, I didn’t do myself much harm. True mania….well, a therapist explained it to me this way. In mania, your baseline arousal gets raised. With a higher baseline, something that would have worried you normally consumes you, something that would have been an irritation becomes infuriating, and something that would have given you a moment of pause becomes terrifying. It’s like all of your emotions got amped up.
My bipolar is mostly managed via medication. For a long time, I only dealt with depression and hypomania, so I just used antidepressants when I was depressed and came off them when I wasn’t, with a therapist’s supervision. Nowadays, because I have mania symptoms, I do take medications all the time. I still have to be careful how much stress I allow in my life; it’s easy for stress to push me into depression or mania, or worse yet, a mixed state, where I feel like molasses in winter except that I’m angry, or scared, or…whatever.
Trigger warnings: description of PTSD symptoms, and panic attacks.
I’m mostly recovered from PTSD. I was in an abusive relationship just before I turned 18, and I kind of shoved all of it into a box and didn’t think about it until I was 22. It took me about three years to get to the point where it stopped being a Thing in my life. One of those years I spent in intense therapy, which is kind of like having major emotional surgery; the next year, I did no work on it and just let myself recover; the year after that, I did some lighter work to ease the scar from the emotional surgery. It still occasionally pops up, but it’s rare. I’ll have times when getting boxed into a corner makes me go into a panic, or when someone reaching in too close to me feels threatening, but they’re rare.
When it was in full swing, any unexpected touch would send me into hyperventilating, and I can remember being in such a panic that I was compelled to abruptly leave, drive home, lock all the doors and windows in the house, and then lock myself in the bedroom, curl up in bed, and get online to instant message with someone I was comfortable with. There are few things as terrifying as driving on a freeway when you’re in a panic attack; you’re freaked out that someone will hit you, what if someone on the other side of the freeway goes over the median?, oh god that railing was close, where did that car come from?! that truck is white-lining into my lane and oh my god there’s no shoulder here…so on. I slammed the door in front of my roommate because it didn’t register that she was behind me and calling my name.
Nowadays, I just have times when leaning over me is triggering, or cornering me freaks me out, and I’m still not great with unexpected touch. People who are close to me get educated on avoiding triggering me, and what to do if I get triggered. It’s mostly a non-issue, but it comes up now and again.
Panic attacks are managed by breathing techniques, mind-body focus, and medication. I also know certain actions that will help with a panic attack, like letting myself check that the front and back doors of the house are locked and the windows are closed. When I have them away from home, I seek out places where I can some space to myself, like a bathroom or a dressing room, or better yet my car. I also speak to myself, remind myself that no one is really going to hurt me, and that I am safe. I also learned, over the years, that getting myself curled up in bed and picking up a book that I have read so many times it is a familiar friend is almost guaranteed to calm me down. Thankfully, being in recovery from PTSD and having my bipolar well-medicated mostly prevents panic attacks.
I think that’s all the big ones. I guess what it works out to is a lot of preventation and preparation for ‘just in case’. A lot of adjustment, that’s for certain. My life is very different than it was before I developed these disabilities, and part of coping with that is finding new hobbies and new friends who get it, new places to talk, so on. Since I became disabled, I’ve focused a lot more on my creative side. I knit and crochet and paint and make jewelery now. I blog about living with a disability. I have a service dog. I’ve made new friends who have disabilities, and one of them has become a roommate. I have a boyfriend whose capability to understand and help is astonishing. The biggest part of living with it is making it worthwhile, and you do that by finding things that make it feel full to you.
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