I know that I am not 18 any more.
One of my doctors kindly pointed that out to me recently.
What I mean is that I can no longer demand of my body what I once did. And I know this, as I embrace the things that come with years gone by. Aging is a complicated issue for me, emotionally charged and not something I am willing to discuss right now, but it is important to note that this post is not about aging. It is, however, about the way my body has worn down due to my disability.
When I was 18 I drilled endlessly on the U.S. style football fields, with the careful precision that four years of training an 8-to-5 step — that being my ability to march exactly eight steps in five yards to whatever beat you set for me — will ingrain into a person. I was able (and expected) to teach others under me to do the same all while playing the horn. To this day I can not hear most music without at least tapping my foot. Emerson, Lake, & Palmer’s “Karn Evil 9” will actually cause me to hum along wistfully. Later I did the same at University. Anyone who participated in University Marching Band at Eastern Michigan University can tell you that marching band was not something you just did, but rather worded at, and I worked hard. Hauling that tuba around during pregame was no easy feat. There was a reason music majors received PE credit for marching band.
Before I was diagnosed I was a runner. When I was 18 I had pounded out miles on the track and on mapped out road routes in order to get into the condition I needed to race for years. I was able to sprint out the eleven or thirteen steps, whichever felt right, to take me to the high jump pit and sail over the bar. I wasn’t amazing, but I had determination to demand it from myself. I ran in high school, and I hated it. I loathed it. I had clever names for the malevolent task-masters whom I called Coaches that I went to voluntarily every day after school and asked for work out schedules and whose hands I shook afterwards.
I ran before, during and after my pregnancy (when I wasn’t throwing up), cussing myself out the whole time. I ran in Navy boot camp, filling myself with the urge and the desire to do well. I hated every moment, but loved the feeling of feet on pavement even as my shins cried out in pain. I filled myself with the desire to go one step further, two, one mile, two, as I shoved tears out of me to replace the pain that filled my body (and I usually peed my pants a little at some point, but that is another story).
Eventually the shin pain became a lot worse. It was massive, and no amount of ice or ibuprofin was going to alleviate it. A bone scan later and some Tolkein-esque blathering you don’t care about and I am told I can never run again. Sure, the Navy loved that. I couldn’t get a chit to back it up w/o getting kicked out earlier than I already did, so I had to go back every 45 days or so to get a new one, and I had to be very sure it was a nice sailor-doctor who signed it, because the Fitness Enhancement people were not going to take anything signed by anyone who was a civilian or any other branch of the military regardless of what degrees they had on the wall. So, running was right out, and they weren’t making it easy for me to, well, take care of me.
I became a swimmer, and I was fantastic at it. I probably knew this deep down, having been a natural swimmer since before I could walk. Had anyone told me that I could swim as an option to running in the Navy sooner I would have. I swam thousands of meters a day, until I was exhausted (trying not to notice that my body was telling me this was sooner and sooner each day). I would do kick turns through migraines that were getting more and more fierce despite the amount of over-the-counter meds I was pounding. Go figure. My Fitness Test scores went from Good/Low to Excellent/High.
Until my abdominal muscles gave out.
I finally pulled something doing sit-ups. I went from doing in the high 60’s to barely being able to do the 35 that was required to pass for my age group pretty much overnight. I would get to 15 and the pain would make me yell out it was so sharp. I could almost clock it, too. Of course sit-ups were always first, and this made push-ups impossible. I couldn’t even do the simple 15 I needed to pass. My doctor felt around, and determined that core exercises were out for fitness tests. I was to do them only at my own pace or with a doctor in physical therapy.
Finally the headaches were bad enough that it was too much and my swimming was scaled back. My exercise was restricted so much that I was barely allowed to do 30 minutes a day. I was still not receiving any pain medication other than anti-depressants, which were not working for me. I started seeing a chiropractor, and doing yoga, which I was told was not a “real” workout, but would count for my weekly number of workouts anyway. Even then I couldn’t do a full class because I was in too much pain.
Still, as I gained weight, cornered in by pain and now stuck in a body that wasn’t allowed to move anymore, my new doctors (because they were always changing) said that I just needed to lose weight, if only I would watch my diet and include more exercise into my daily routine, which by now was only limited to half days of work due to pain and 15 minutes of exercise by my chiropractor and PCM, and Hey! How about seeing a dietician?
After my discharge, when my second career choice was unceremoniously ended with me handing over my ID card, I finally settled into a place where I stopped hating my body so much (OK, you got me, I’m still working on it). I am finally on a pain management regimen, I do light exercise as the pain permits, and my body is stable at a weight that hasn’t fluxed one way or the other for a few years now. I had to give some things up (drinking alcohol any more than a few sips being the one that comes to mind mostly) because of those medications. But all of this aside, I have tried to take care of myself. I have followed what doctors have told me to do, I didn’t smoke, I tried to eat right, I wore sunscreen…I even eat very little meat, having been an on again/off again vegetarian. I know that these are not hard and fast actual things that guarantee health, they are just things that I have always followed because some doctor or dietician or another has advised me blah blibitty blah… What I mean is that I have very few of what people generally consider vices.
Recently I had some issues where I have been vomiting in my mouth, acid reflux, heart burn, all kinds of fun stuff. They gave me a nice, handy laundry list of things I need to give up in order to help alleviate the symptoms now that they have prodded around my duodendum with a camera.
Things like coffee, and chocolate, and anything spicy (or tomato-based in general), which are three of my favorite things. All citrus foods are right out, which I expected, but they snuck in things that surprised me, like mint and mint flavoured things, which took half of my herbal teas out as well. Finally, I find myself with no vices if I am to follow all of the doctorly advice to maintaining my health.
Let me tell you that I have not been a pleasant person to be around lately. I depend on that Super Human tolerance for things like caffeine and chocolate (sometimes at the same time!) to fuel things like my snark and ability to write 2,000+ word blogs posts. I have sustained myself on coffee and little else at times. It is often the centerpiece of friendly chats and family gatherings.
It leaves me to wonder, how many straws do we lose before we say “that’s the last one? I can’t take any more!”?
What lines do we draw when we get all of that medical advice, when things that we enjoy or that we once did have been stripped away from us one by one, to balance a quality of life for ourselves so we don’t sit around stewing about what we can or can’t do anymore, and to make sure that we do actually pay attention to the call of our bodies as they try to tell us something (if they do send us signals at all)? Where do we draw the lines between telling our bodies to piss off because we need that comfort, that thing that helps us get through the day when we feel like everything else has been taken from us?
Or am I making mountains out of molehills here?
Photo credit: ashleigh290
I don’t typically comment here (I read FWD on my RSS feeder every day though!) but this piece was so timely for me. I’ve been struggling with many of the same questions and issues lately. Where *do* we draw that line? I think it’s different for everyone, and it’s different every day. I’d like to say we should draw the line based on our own evaluations of our own needs and abilities at that moment, but you know, trusting ourselves is um, not something society thinks we ought to be doing anyway. Anyway, thanks so much for writing so much of what’s in my head. It feels less isolating to know other people understand (my cadre of friends is almost entirely TAB, and trying to discuss chronic illness with them….guh…they mean well but you know).
Wow, wonderful post, thank you.
I have had similar feelings of “everything has been stripped away” only to then find, no, my disability had yet more it could take away. And did.
One “that’s the last straw” experience of mine, I was so far beyond the last straw I couldn’t give myself permission to see it for what it was. I had been put on an extremely severe (and I now know very, very high GI) elimination diet by an utter quack, but was faithfully sticking with it, having been berated by her into all the victim-blaming “it’s your fault you have cfs because you eat wheat and tomatoes” stuff. My body was starving, the (breathtakingly expensive) supplements she gave me would sometimes make me throw up, I was so exhausted and hungry all I could do was cry this particular evening, not even walk or talk (which I usually can). My mother made a big bowl of pasta (wheat) with tomato-based sauce (a big no-no) and smothered it in cheese (cow dairy). She put it right in front of me, and gave me permission to not see eating it as prolonging my illness, but rather as caring for my starved, worn-out body. It was one of the most loving acts I have ever experienced.
(NB The way in which I felt so much better after eating it indicates I never had those food sensitivities in the first place, I know that it is a very different situation for other people.)
I have to admit that when you reached the part where your new military doctors told you that you “had to exercise more and eat right” to eliminate your pain, I had to laugh. Typical typical typical.
Slightly off-topic: why is military health care so notoriously annoying? Is it just the fact that it’s impossible to keep the same doctor for more than a few months? I know that Julie over at Samurai Knitter has struggled, over and over and over again, with getting adequate pain management from the military health system.
At my GI’s office, I ran across a journal article saying there was very little evidence that the usual dietary recommendations for reflux did any good except for a very few– like maybe two or three. I am terribly sorry that I can’t remember what those are, but maybe a food diary might help (I know, I know). For my husband it’s basically only caffeine that has any effect on his, and even then he has a “safe” threshold. This seems to me to be another example of arbitrary policing based on tradition and assumptions rather than evidence.
Fisrt of all, I’m sorry for all you have lost/are losing and I’m glad you are in an okish place.
Second, I don’t think you are making mountains out of molehills. It’s a very vaild concern to those of us that have a prgressive something, or different disabilities/conditions that start at different times.
It’s something I don’t actually want to thing deeply about, having lost enough ‘straws’ this last year to send me into a deep depression. One I’m thankfully now recovering from, in part due to support from family and friends. I think that their support is one reason that I can keep losing straws and still manage to function (as in get up in the morning, not want to kill myself type function.)
As to where we draw the lines? Phft. I’ll get back to you on that one.
I have GERD, and I have found that my “trigger foods” aren’t necessarily others’ “trigger foods”. For me it’s greasy salty things, coffee, chocolate, and tomato/citrus/cranberry. Harsh things. Pepperoni does it really bad. Drinking too many alcoholic beverages (particularly wine or vodka) also does it; worst heartburn I ever had was at a renaissance faire where I drank too much around our campfire and had no pillows to sleep with that night. I also have safe thresholds, and I take omeprazole everyday at least half an hour before my first food of the day so I don’t suffer from it all day. I still get it sometimes, despite the medication, but it made it so I could choose to eat pepperoni pizza again, on occasion. There is no “one size fits all” solution for GERD, and I’ve found that it’s touch-and-go with my body, and that stress, lying down too soon after eating, laying on my left side, and eating too much at one time always makes it worse for me. It may be useful for you to figure out your own trigger foods if the doctor’s not being all that helpful. It’s easy, understandable, and totally valid to feel alone or abandoned when your medical care providers aren’t doing an adequate job. I hope you’re able to find things that work *for you*.
Where do we draw the line? In my case, I do what feels good to my body. For example, I have noticed that taking a walk relieves my abdominal pain sometimes. I also try to avoid foods that I know set off the pain. Note, however, that I have gotten very few medical recommendations to “fix” my health. “Exercise more” and “Drink more water”, both of which were correct in my case, were actually the most important I can remember.
@Ethyl: That is what has drawn me to internet communities, especially in the last year. I can not discuss the pains and pleasures of living in this body with my RL friends, and often even with my family. It isn’t something that I can seem to get any of my TAB friends and family to understand, without them somehow making me feel like I am some kind of whinger and whiner or otherwise just being a wet blanket. When I need to consider my body’s needs over socialization it isn’t something they understand. This community has given me that.
@bywyd, Rebecca and Shawna J.: I agree re: food recommendations. Basically what we are doing is cutting back (as a family) and allowing me to have those “forbidden fruits” in moderation now and again. I get really cranky w/o my caffeine, especially since it is something that I use from time to time to help with migraine pain, and my PCM knows this, so she is supportive since it lowers the amount of narcotics I depend on a little. I have also noticed that it makes no difference really, since everything gives me the reflux and indigestion anyhow. But since my condition is “stable” it isn’t a concern, and “diet” it is! Whee! I will just keep a log and follow up if there is any change.
@Sarah TX: I think that not only is it because our doctors are frequently PCSing, but because of the way our medical records are transferred (THANKS DICK CHENEY! <----- No, I am serious, he did this) they don't always get transcribed properly and we are constantly having to re-tell doctors and care-givers again and again the same thing and are having to have the same shit re-checked again and again. This is why TRICARE is bleeding money, not because we are faking shit like Sec. Gates keeps going on about, but because our healthcare system is messed up. @Lullabymoon: Word @Astrid: That is mostly how I handle things: listen to my body. I just wish it would be a little more clear about what it needs and give me more notice. I.e: You are going to need your cane today when you are at the grocery store, but then you are going to be too tired to use it by the time you pick up your kid, etc, etc, etc...
Re: the reflux
Both my mother and I have it (essentially because the valve or whatever it is at the top of the stomach doesn’t work right). We have found that my symptoms are alleviated by NOT putting anything in my stomach before lying down, and my mother’s is alleviated by ALWAYS putting a little something in her stomach before lying down. What we eat doesn’t matter (for us), but when we eat (and drink) does. Lots of small meals rather than large ones also helps me.
The reflux diet, it does nothing (for us). Never has. Except, you know, not eating spicy food when you’re queasy because that stuff BURNS the second time around 😛
Ouyang Dan – oh more fun with tricare. I get asking the same questions 50 times in 10 minutes in a hospital – they want to make sure they have the right patient.
You need to do a post on Tricare and how fun it is. (Actually, it’s been easy for me since 2006, when I got a case manager. I think I’m too old on paper, but she still helps me by telling me how to get around something and the other week, she added 5 visits to a referral for me.)
My stomach has been grumpy since before the constant barrage of pain medication. My thinking is, if the doctors don’t say “you need to lose weight” or “cut X from your diet,” then I’m not.
And you’re not making a mountain out of a molehill – it’s your life. It’s also your quality of life – at what point do the treatments become worse than the disease? “Quality of life” is a nebulous concept anyway – I remember being afraid to go to the bathroom because of the pain.. not a good quality of life – but what makes a good one?
I haven’t had to give up much – I can still walk around the neighborhood, and I stopped riding my bike during those brief pain-free months anyway and that was almost 3 years ago. What hurt was stopping Tae Kwon Do at 14, due to my thyroid problems. Obviously, I can’t go back. To cool down at the end, we’d do crunches or another exercise meant for the abdomen. Yeah, perfect.
Oh I totally empathise. I’ve got reflux and chronic fatigue syndrome AND some unrelated food intolerances (plus some other things :/) so have to be constantly super vigilant. The least straw for me was gluten, I tried giving it up and felt TERRIBLE and just refuse to even consider giving it up again. Refined sugar is another one (cutting it down, sure, but sometimes I really feel like cake, dammit, even if it has to be dairy/soy/chocolate etc free and low fat). I don’t have many vices left!
Thank you. This is a constant struggle for me although in different ways; I don’t have gerd, but every day is a question mark – a what will you be able to get done, eat, etc. I hate it and my doctors at this point; especially since about 2/3 of the things they’ve had me do make no difference after months/years of following their ludicrous instructions.
And it is a mountain – one that takes every ounce of strength and courage to climb, only we can never reach the summit. Unlike Sam & Frodo there does not seem to be an end in sight, only brief respites followed by another push and another and another.