Along with knowing how hard you can push yourself, there’s also that fine line of knowing when to step back.

Throw chronic disease in the mix, and that line blurs even more.

For me, it’s evident that I don’t exercise when I’m not breathing at 80+% of my best peak flow [aka in my yellow zone]. Especially right now when I’m not even doing anything and am breathing in my yellow zone. Something earlier compelled me to attempt some push-ups. Because I’m a genius. Three of them and I was on the floor, and not in push-up fashion [granted right now I am doing modified push ups. But that is 1) better than no push ups and 2) another story for another day].

Oh right, and the whole mom quote of the day saying “Yeah, you don’t sound healthy when you cough.” Thanks, Mom. Thanks. [That said, I have a normal, baseline cough. It is not as brutal sounding or feeling as this sick cough is. Sick cough you can totally tell there’s rattly gross junk in there.

And it sucks. I’ve essentially gone from almost 30K last week to zero, which will remain zero unless I get better. I threw some bicep curls in tonight while printing an assignment because really, 3 x 10 with five-pounders = not terribly taxing on the lungs and at least I did something a little good. YES, if I’m just flaring mildly, I often do throw a workout in there. I probably shouldn’t but I do. I catch a cold though, and everything gets put on hold, because my lungs don’t take that well.

That’s what’s brutal. That I may actually end up backtracking having to take a week [or more] off of working out. I’m averaging about six hours of physical activity per week, probably about four or so of those in actual workouts, and the rest in commutes and stuff. I’m 21 kilometers behind where I was in October for November, which is something I definitely would have caught up with this week if I wasn’t sick. Thank goodness i’m not training for anything [training? What’s that?]

It’s brutal when I was so excited to tell my doctor on Thursday that I’m doing fantastic and exercising for like four hours a week and so on. And now I get to go in and tell her I’m burnt out on the asthma shit and can we please get me in and out as quickly as possible so I can go on with my life outside of my currently screwed up lungs.

Oh, Mom and Grandma, if you’re reading this, consider this your disclaimer on the fact that I’m about to give asthma The Finger in this picture and drop an f-bomb in the next paragraph:

Last night, today, THIS is how asthma makes me feel. Pissed off and exhausted and angry. Fuck asthma. Screw the nebs and the inhalers, the jitteriness, the coughing, and the not being able to clear this shit out of my lungs. I’m waking up several times a night, and have done so multiple nights this week, and then I have to be awake and think about how while this flare and this cold are temporary, this disease is forever. And how I will have to do this again at some point after I get better. And that’s something that’s hard to think about. It’s much easier to deal with when I feel okay and I can just not have to deal with thinking about it until I get sick or flare again. I realize I have no idea how I went through months at a time of feeling like shit without a burnout. I have no idea. The intensity of it increases and decreases, but this intensity is what some of my friends with asthma face every single day and then some [also, to break the seriousness for a moment here, totally starting a giving asthma the finger project over here on Facebook. Because it’s therapeutic].

Last night I was burning out on the asthma stuff hardcore; it was honestly the lowest I’ve felt in years about something in my own life. Today I started out rough but have been trying to step back in a different way; push it out of my head, focus on one doubled-over coughing spasm at a time, one inhaler or neb at a time, one breath at a time.

Yeah, I need a break from this. That’s not going to happen, and I’ve accepted that. I know I will get better from this, but I also know that it will happen again. Because you can never let your guard down — you can’t just stop the inhalers, the doctor’s appointments, the germs, the nebs, the medication-induced jitteriness and tachycardia, the frequent hand-washing, the thoughts of every little step involved in taking care of yourself. And you know what, this is my reality. Nobody gave me a choice in the matter of having to share my body with asthma, but I do have the choice in how I perceive it [own it] and how I fight it with every last thing I’ve got.

And if I can have even just one more little piece of control in this that is in my control and doesn’t come off of a prescription printout, I want that. I want to throw all the fight I have into this disease — not just for me, but for everybody. And being able to share that with everybody–that your healing, inside and out, your body and your heart, doesn’t have to come from a pharmacy. That little piece is a big piece of my life: exercise.

But for now, it’s nebs and Watch The Sky on repeat.

Trying to remind myself that: even if today was a good day wasn’t true for today, it can be true for tomorrow.

i’m lost at sea. the radio is jammin’ but they won’t find me. i swear it’s for the best, and then your frequency is pulling me in closer until i’m home. and i’ve been up for days, i finally lost my mind and then i lost my way, i’m blistered but i’m better, and i’m home

i will crawl, there’s things that aren’t worth giving up, i know. but i won’t let this get me, i will fight. you live the life you’re given with the storms outside — some days all i do is watch the sky.

this room’s too small, it’s only getting smaller, i’m against the wall. and slowly getting taller here in wonderland, this guilt feels so familiar and i’m home

i will crawl. there’s things that aren’t worth giving up, i know. but i won’t let this get me, i will fight. you live the life you’re given with the storms outside — some days all i do is watch the sky. some days all i do is watch the sky

i think i, i could use a little break. today was a good day. i think i, i could use a little break. but today was a good day. and it’s a deep sea in which i’m floating, still i seem to think that i must crawl. there’s things that aren’t worth giving up i know, when you can’t bear to carry me, i’ll fight. you live the life you’re given with the storms outside. some days all i do is watch the sky. today was a good day. today was a good day.

watch the sky, something corporate

Over the last year or so as I’ve been switching a lot of gears in my own life, the amazingness that is the internet has facilitated the growth of a friendship between two people halfway around the world from one another who have, in my opinion, far too many parallels between themselves for it to be a coincidence (that said, I don’t believe in coincidence).

I’m blessed to have my friend Natasha sharing her story here about the effects exercise has on not only her body, but also her mental health (and that whole body image monkey that comes with the intermingling of the two).  Natasha lives in the Netherlands, grew up in the UK, and is a Canadian citizen [yay for Canada!], which makes for a lot of interesting discussion!  She’s also in the fairly recent past completed two triathlons and her first half marathon–no small feat for anybody, but when you add not only asthma but also a host of mental health problems, you’ve got one amazing woman!

It takes a lot of guts to open up about mental health issues in a forum such as this, but it’s something that needs to be talked about, so I’m really excited to be able to share Natasha’s story.

natasha

I think it’s fair to say that I have a long standing love/hate relationship with exercise.  I’ve had the image of myself as exercise-hating, non-athletic and unfit as long as I can remember, and yet if I think back to my childhood, I don’t think this was always so.  It’s a fair point that I never fared well in team sports – a lack of co-ordination, coupled with being prohibited from wearing glasses in school PE lessons didn’t make me a very useful person to have on a team.  And then, of course, there was the fact that I was sick on a fairly regular basis.  I was only diagnosed with asthma in my early teens, but the signs were there from a younger age.

On the other hand, though, I used to love going on cycling ‘expeditions’ to the local woods, or to the park.  I enjoyed gymnastics, skating, skipping, playing elastics… I think I wasn’t the inactive child I picture myself as.

Kerri’s already had a couple guest posts by other asthmatics, and I’m not sure that I have so much to add, so I want to take this post in a slightly different direction and rather than focus on the topic of physical health and exercise, to direct my attention to the area of mental health.  In reality there’s a fine line between the two things, and for me, at least, the two are very intertwined.  As a teenager and through much of my twenties I suffered from depression, and both then and now I’m more prone than the average person to anxiety.

Cause and effect are a murky line, I’ve been recently diagnosed with ADHD, with which both depression and anxiety are often linked – either through biochemistry, or simply the result of trying to fit into a round hole as a square peg.  I also suffer from a condition called Poly Cystic Ovarian Syndrome (PCOS).  PCOS causes hormonal imbalance, which leads to weight gain and hirsutism amongst the more visible symptoms.  Needless to say, neither the body image issues which result, nor the wonky hormone levels do much to help your mental and emotional health.

Between issues of self-image, and the breathlessness which came with the asthma, then, exercise quickly because something I hated as a teenager, in a world where school PE class involved tiny gym skirts, which suited only the sylph like.

And yet, here is the biggest irony of them all.  The PCOS, the ADHD, the depression, even the asthma, exercise would seem to be that magic pill that has the power to help all of these conditions.  The one thing you can do for yourself, without cost, without resulting to pharmaceuticals.

But…

The weight gain caused by the PCOS keeps you out of the gym because you’re ashamed of your body.  The ADHD distracts you when you intend to go out for a run.  The depression… well, really, when you’re curled up on the sofa in a ball of misery, does stepping outside for a walk even cross your mind?  If it does, it only serves to remind yourself how worthless you are, because it’s a beautiful day outside, and you just can’t face it… yet you hate yourself for wasting it.  And then, the icing on the cake, the anxiety, the fear that you’ll have an asthma attack you can’t bring under control.

When I read back over that last paragraph, I have to say that it doesn’t sound very hopeful.  And yet, last year I took part in a 160km (100miles) walk in four days.  After a year sidelined from running whilst I worked to bring my asthma back under control, this year I ran my first half marathon, and took part in two triathlons.

Yes, I am still overweight, although I have it under better control than in my teens.  I can’t say that I’m happy with my weight, but I’ve learned to live with it, and I haven’t stopped striving to lose those final pounds.  I’m learning to take baby steps, set myself concrete goals, and figure out how to work with the ADHD, rather than waste my energy fighting against it, and myself.  The anxiety remains, but I refuse to let it defeat me, and with every small success, I come closer to defeating it.  My asthma is better managed, and I’m beginning not only to run despite asthma, but to learn to push myself beyond what I believed were my limits.

And yes, it is true, the further I push myself out of my comfort zone, be it facing an Open Water Swim in a triathlon, or sparring in a kickboxing class, the more I feel the benefit, both physically and mentally.  I may not be losing weight, but I’m toning up.  I may still get more out of breath on the stairs than my colleagues, but I know that’s the asthma talking and not my fitness level.

And most importantly?   At the end of a workout, I feel like I’m on top of the world.

—–

Thanks for sharing your story, Natasha!  (Gym SKIRTS? You poor thing!)

Natasha lives with her crazy cats, enjoys reading pretty much anything she can get her hands on (she keeps saying she needs more bookshelves!), and is a software architect with a passion for photography and travel.  Natasha blogs at Heron Underwater, sharing her stories of athletic endeavours, her health and life in general.

Several years ago I connected with Elisheva over our common bond of our occasionally spazzy lungs.  Since then, she’s become among my closest online friends, and we’ve shared in both frustration and celebration with one another. She is currently training for the Tel Aviv Marathon 10K and I’m excited to have here sharing her story about being diagnosed with asthma in middle school, growing from that point forward, and her current fitness goal participating in her first race.

I’d also like to add, that while Elisheva downplays her story with the “mild asthmatic” clause in her second paragraph, I’m thankful she’s sharing it because it’s a story that a lot of people with asthma can identify with, as somewhere from 50-75% of people with asthma fall into the “intermittent or mild” categories (Lieberman, AAAI), like Elisheva does.

Take it away, Elisheva!

—–

This is in response to the challenge Kerri posted in her post “exercise and chronic disease : sharing my asthma story“.  First off, I don’t like the term “chronic disease”.  The word “disease” makes me think of creepy crawly infectious diseases that are going to kill you.  And second I don’t like associating that term with myself.  I’m a healthy person.  I really am.  I’m lucky.  I spend the vast majority of my time not thinking about my health or feeling sick at all.  Hence the word “disease” is out since I don’t have any creepy crawlies.  And the word “chronic” is out since I spend most of my time feeling healthy.

Tho.. what’s the exact definition of “chronic”?  Can it also mean something that keeps coming back?  If so… okay fine.  I guess chronic is back in.  Then again, I spent about half an hour today hunched over doing body shaking coughs and taking a couple more puffs on an inhaler as a result of running in the cold this evening.  But hey, that’s normal, isn’t it?  That doesn’t bother me that much.  Tho this was my first (quite pathetic) run in two weeks, after an unscheduled hiatus due in part to my apparent inability to breathe like a human in winter weather, not that running in pouring rain and hail is all that great of any idea anyway.  Kerri expressed interest in me doing a post, and I don’t want to let my buddy down.  Tho I do feel a bit unoriginal writing about the same condition as has already been posted about.  Plus overall, I’m a pretty mild asthmatic, tho certain things – exercise included – will always be challenging for me.

Asthma is nothing new to me – I’ve been dealing with it since I was in fifth grade, back in 1996.  Pretty awkward age to get diagnosed with anything, but hey, everything’s awkward when you’re a tween.  And a teen.  Happy I never have to do those years again.  And at that point I was already pretty familiar with it since my little brother, who was six years younger than me, was asthmatic since birth and was a regular in the ER and did inhalers and nebulizer treatments at home.  That ended up being beneficial to me since (a) my parents were already pros and (b) I had his nebulizer available, which I attribute to my never having been in the ER myself.  Looking back at my middle school and high school years, I don’t remember asthma being a particularly huge deal.  I only have a few distinct memories of it really affecting my life throughout those years.  Carrying around asthma equipment in your school backpack is hugely awkward.  Actually using it is 100 times more awkward.  There were many instances where I had friends pleading with me to use my inhaler already when my breathing was clearly out of control but I insisted I was fine.  I think I even got kicked out of class once because my coughing was so loud and distracting.  In getting ready for gym I used to wait for all of the other girls to finish changing and leave the bathroom before I took my inhaler.  I think I did the same thing while I was on the volleyball team in high school.  Seventh grade gym class was interesting.  For probably the first and only time in history, the asthmatic kid was the teacher’s pet.  The teacher told me that her four year old daughter had just been diagnosed with asthma and she was going through the process of learning to properly cope with it and manage it.  She was extra nice to me and asked me questions now and then about asthma.  There was one time that year when I sat out on gym class because of asthma (I think I was getting over a cold then).  There was another girl who was also sitting out and she asked me what was wrong with me that I wasn’t participating.  I said “asthma”.  And she replied “Oh. I have asthma too. That’s not a reason to sit out of gym class.”  I don’t remember if I asked her why she happened to be sitting out that class.  Thinking… thinking… Oh, there was that time in volleyball when I guess I lost my inhaler and didn’t notice and suddenly one of the teachers was up in front of everyone waving my Ventolin asking whose it was.  I realized I was missing mine and had to go up and claim it, which I found to be highly embarrassing.  And… that’s it, I think, for schooltime asthma exercise memories.  School was a long time ago, man.

So anyway, fast forward to the present.  In an attempt to get in shape I swim once a week (which I’ve been doing for the past two years or so), do Zumba once a week (since January) and now I got it into my head to take up running (about two months ago).  In theory I’d like to be running twice a week.  I’m planning on running 10K in the Tel Aviv Marathon in March for a group of asthma awareness people.  I used to be good about running twice a week, but then the weather changed and whatnot and yeah.  In addition, I live four flights up with no elevator and don’t have a car.  So I spend a lot of time walking and going up and down stairs.

I’m not going to lie.  Exercising with asthma is hard.  And it’s frustrating.  The frustration is probably the worst part.  You take your inhalers like you’re supposed to.  Before exercise.  Sometimes during exercise.  Often after.  Sometimes you’re totally fine (I’d say about 50% of the time I’m totally fine).  Sometimes you cough your way through the exercise session.  Sometimes you’re fine during the exercise and fine right after and then an hour later you’re doubled up emitting these body shaking coughs.  And it all seems worth it (Okay it seems worth it to me.  Not to most of my real life asthmatic friends.  I guess they’re not masochists.) because you’re always improving.  Your speed is better.  Your endurance is better.  Your breathing often is better.  You get minor frustrations here and there about why you STILL get so out of breath in the pool after two years of regular swimming and changing up your meds, when you take them, etc.  But whatever.  Swimming makes you happy (okay, I don’t know about you.  I love swimming.  Even when it’s hard.)  You start believing in yourself and looking up asthmatic athlete forums online and reading articles and interviews with famous asthmatic athletes (How cute is this?) and then you get your period or a cold or the weather changes and suddenly you can’t even sit quietly on your couch in your house without the body shaking coughing and the breathlessness.  You take what seems like a billion inhaler breaks throughout the day and wonder how the hell you’ll be able to run in that damn Tel Aviv Marathon if you can’t even take a deep breath or laugh or yawn without setting off uncontrollable coughing.  I honestly don’t know how people with constant asthma symptoms deal with it.  My main coping mechanism is telling myself that it’ll be over soon.  Of course it will be back later, in weeks or months if I’m lucky.  But this specific episode will always be over soon.  Cuz things end.  Periods, colds, rain… it all ends.  And then I’ll be fine.  Back to my regularly scheduled breathing well, taking exercise and other things into account.  But those things don’t generally last long.  Or are particularly disabling.

The biggest frustration is the time lost.  Like now.  Missing two weeks of running doesn’t just keep your training from moving forward.  It actually moves you backwards.  You end up losing some of what you’ve gained and have to start all over again.  And I’m actually worried that something will happen and I won’t be able to run the 10K.  How do I know I’ll be okay specifically on that day?  Worst case scenario I can walk it.  The chances that I wouldn’t be able to even walk it are pretty slim.  But I really do want to run it.  Like really really.

I think for me at least, asthma serves as a driving force for getting in shape.  Some of my friends have pointed that out to me.  I tend to use it sometimes as a guilt card to get people to come to Zumba or to swimming with me.  Or to train for the marathon.  I say something along the lines of “I have an incurable lung disease (make it sound as pitiful as possible, eh?) and I do _______.  I have to take drugs in order to breathe well enough to do ____________ and I cough while I do it and I still do _______.”  Unfortunately for me, such tactic doesn’t work as well as I’d like it to.  A lot of times they’ll just say I’m nuts or if they’re smart, they’ll tell me that I exercise because I’m asthmatic.  Because I want to prove to myself – and others – that I can.  The first time I heard someone tell me that I was impressed.  I think there’s a lot of truth in that.

I hope this gives you some insight into what it’s like to be an asthmatic athlete (even tho there have been a couple before me already).  I’d really like to read what it’s like to exercise with other conditions and what kinds of things you have to take into account and what your feelings about the whole thing are.  Kerri – I know you have friends with diabetes who read this.  And people with other stuff too.  Also, Kerri thanks for coming up with the topic.  Challenge accepted.

—–

Thanks for sharing, Elisheva, and best of luck with your race!  I can’t wait to hear about the rest of your training and read the race report.

Elisheva lives in Jerusalem and blogs at Ramblings of an Occasionally Oxygen Deprived Mind about whatever strikes her–whether it’s asthma and exercise or the situation in the Middle East, posting recipes to her favourite dishes, or general updates about what she’s up to.  She loves coffee, beef and chocolate, is currently on a muffin baking kick (sometimes making me want to get on a plane to Israel to share!) and exploring her community.  She’s also mom to a hamster named Boten [which translates to “peanut”–awwww].

I’ve written exactly one blog post about the intersection of exercise and asthma.  Given the fact that asthma management is a pretty big modifier in how I exercise, and that both topics are really important to me from a personal standpoint, maybe it deserves a little more attention here.

So let’s start at the beginning. In grade eleven, the year I was diagnosed with asthma, gym class was not mandatory. This is likely both a blessing and a curse in that 1) My asthma was not managed well; 2) I did not have a family doctor, thus contributing to point 1; 3) I had not done anything more than a 1K walk since grade ten; 4) Being required to be physically active would have likely made me catch my asthma earlier and receive proper treatment sooner [Read: for me, “take your blue inhaler and you’ll be fine” is not proper treatment].

Fast forward to August 2008 — I’m using my rescue inhaler three to four times per day every day, and was symptomatic between doses finding myself awaiting the four hour mark so I could take my inhaler again (in that regard, I’m sort of a badass now and will dose more than two puffs every four hours if necessary).  Two months into my mandatory grade 12 phys ed classes I finally got put on additional asthma medicine (FloVent), which didn’t help as much as it should.

Fast forward to January when something made me decide to take dance of all things (how rad is it my high school had a dance class?).  Yeah, still got the uncontrolled asthma going on, still winter (my bad season), and now I’m basically going from zero to sixty in terms of exercise.  That’s gonna go well, right?  I spent more time than I care to sitting on the sidelines on days that i just couldn’t do it.  I started up on Singulair midway through the term, which was later discontinued as it was decided it wasn’t doing anything.  Towards the very end of my grade 12 year, I was started on Symbicort in place of the FloVent, and things finally started feeling a little bit better.

Around this time, midway through the term, I think, is when I connected with Steve, who has since become an amazing role model and friend. Steve was imperative in helping me get the asthma sorted out better and totally awesome in encouraging the physical activity. I strongly believe that if it weren’t for Steve that I probably 1) wouldn’t be a kinesiology major right now, and 2) would likely have just started sitting on my ass again after dance ended in June.  I started fitness walking around this time until it because freezing.

Fast forward again to midway through first year. It’s the winter, early 2010, the asthma sucks, and I start going to the gym. In no way was my asthma controlled, but it was better than it was nearly two years later, and I was sick and tired of waiting around for something good to happen. So I go to the gym. Take my inhaler beforehand, whatever, go give’r.

Here’s the deal: I went to the gym again today, and the issue is kind of just the same.  Especially in winter (granted, it is currently unseasonably warm, so I’m doing better than expected) I just cough a lot. It doesn’t really matter what’s up, good day/bad day, I just cough a lot, especially when I’m exercising. It’s one of the reasons I hate going to the gym, because I hate people staring when I cough like the guy beside me was today, and I hate grossing people out.  I hate freaking people out.  I’ve had enough of those experiences too–grade 12 gym when I crashed on the bleachers following running the last two minutes of the twelve minute run after walking the bulk of it because i was so freaking tight and didn’t know it was okay to take my inhaler again since I’d just taken it.  Then, in like, 2010 or something pushing myself way too hard and getting way too tight on the elliptical and having to stop, use the wall to support myself and take my inhaler. My friend who was beside me basically had no idea what was going on as she’d never seen my asthma get that bad before.  So the freaking out people thing? I’ve done it, and I hate it, and I try really hard to avoid that kind of stuff.  Like, at the start line of my first 10K, I took my inhaler and my coworker, standing beside me, didn’t even notice.

It’s why I prefer to work out alone, because then I can cough and cough up shit and nobody is there to get grossed out, and not have people staring at me every time I cough like the dude in the gym yesterday on the bike beside me. Like, sorry? [Related: No, I wasn’t breathing great at the gym, or before for that matter, so I was awake at 6 AM and don’t feel so good today, but in my mind it’s worth it.]

Since then my medication regime has switched up and things are better. It takes me three inhalers daily and usually a daily hit or two of the rescue inhaler (at least). But you know what? I’m doing it. It’s hard and it sucks sometimes, but it’s worth it.  It’s even more worth it when on occasion I can kick my non asthmatic friends’ butts endurance-wise, or in that ‘yeah, i have kinda shitty lungs and still do this, so . . . what’s your excuse for not taking care of your body?’

So yeah, exercise is still a current issue. That may never change. I just basically don’t care anymore, I try not to let myself be limited, and if this is as good as it’s getting, then I’m just gonna keep pushing unless I’m having issues when not exerting myself.  I’ll probably never be a great athlete, but what counts is that I’m getting out there and doing it and trying.  My current goal come spring will be training to walk a half marathon in Fall 2012.  Maybe I’ll feel like an athlete after that or something.

Yeah, chronic disease sucks. And yeah, it makes stuff in general way harder. But your body can only give you what you give it.  So what choice are you making on that?  Grab your goal, make your plan, and go for it. Whether it’s being able to run a marathon or walk up your stairs or play with your kids . . . you can do it. Own it.

What’s your story? Leave me a comment, or e-mail me about how you’re kicking ignorance through fitness.  Because unlike asthma, CF, MS, COPD, diabetes, heart disease or something else you may be facing . . . ignorance is a curable disease.  I’d love guest posts on the subject, so if you’re comfortable and would like me to share your story here, I’d be honoured — just let me know.

I’m currently in the midst of juggling school, writing a paper, falling further behind in readings, navigating some other stuff, work and picking up where I left off after an intense weekend away at the youth retreat — sometimes picking up after just a couple days away feels like picking up after so much longer.

in an e-mail I got from Jay [my prof] today about some of the above, he added these quotes to the end:

“Learning is how children use experience to modify behaviour. Play is how children use behaviour to modify experience”

–Marshall

“Even in the midst of our own struggles, we can offer encouragement. Even during our personal low periods, we can continue to try and be a mentor to those around us.  If we are honest about what we are facing, we can offer hope to others that they are not alone.”

–John Wooden

Total resonation.