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Showing results for tags 'ehlers-danlos'.
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So, I've been reading the blog and waffling a little bit about whether or not a fitness community makes sense for me to join, but I'm here. I have a few major challenges to the concept of "fitness" that have made it hard for me even though I take my health very seriously. Before I launch into my "fitness story", let me introduce myself! I'm 25, I live a few hours from Washington DC with my amazing fiancee, A, a PhD student in history. I'm a graduate student studying medieval religion, currently writing my thesis. 3 weeks till the first draft is due! Wish me luck! I'm also a huge geek -- I grew up in a very Star Wars house (my dad showed me the Star Wars fanfiction he typed on a typewriter back in the day back between A New Hope and The Empire Strikes Back! Old-school, Dad.) and I met my fiancee through Tolkien roleplaying online. Tolkien has been my first and enduring fandom love, and my favorite characters are Boromir and Denethor (ask me about Gondor!). I play Lord of the Rings Online occasionally though I'm not at a very high level (Loremasters represent!). Most of my friends are fandom friends I met online talking geeky. I have a lot of food restrictions, so I've learned to love to cook and bake. I also write speculative fiction that combines my research in the medieval world with urban fantasy, science fiction, and weird tales. Writing is actually my main hobby. I'm also a huge balletomane (my lady love takes lessons and is wild about it) so if you're a ballet person come sit by me. I'm also chronically ill. I have the hypermobile type of ehlers-danlos syndrome, which is a short way of saying: "every major joint in my body dislocates at least partially". Not for any particular reason. Sleeping, sitting in a chair, and normal body movement are major culprits. I have subluxations (mini-dislocations) and larger dislocations daily. Here's a list: both knees, both shoulders, some of my toes on both feet, my elbows, a couple of ribs. When I sublux joints, I pinch nerves, which is excruciating, including ones in my arms, my hips, my neck, my shoulders, and my hands. I also have chronically inflamed muscle tissue that is extremely painful. I take a lot of medication for my conditions, and my health yo-yos based on the weather. I am gluten-free, egg-free, and 90% dairy free (just cheese, sometimes, or a cup of house chai at my favorite tea place). I make 95% of all my food at home, and it's low-carb (but not paleo because I'm broke and my budget and I love legumes). My fiancee and I make fabulous, vegetable and protein-heavy food at home. We cook from around the world -- Indian food, Mexican food, Asian-inspired cuisine, Russian food, North African and Mediterranean. We've been completely gluten-free 3 years, and it's made a huge difference in both our health (she's chronically ill too). While it didn't used to be, my weight has been a sore spot in my life for a while. Over the past year my weight's been going up. I couldn't figure it out at first, because my fiancee's weight has decreased gradually from diet alone as she's very low activity. I'm eating better than I ever did earlier in life, I sleep better than I ever have, my medications mean on average I feel better than I ever expected... but there's the problem! I'm on a medication for chronic pain that makes me gain weight. I went from 155lb to between 165-170 (I don't have a scale, this is from doctors offices) last year, with every weight creep associated with increasing the dose of the medication. I don't care about the number, but for the first time in my life I am starting to have a visible stomach. For obvious reasons, exercising can be pretty tough for me. And the kinds of exercises I can do are pretty limited because of my joint hypermobility -- I can do bodyweight, but not anything that involves bending my knees and straightening them again quickly. I used to do modified yoga and still do it occasionally. And I can walk but I have to be careful with that as if I walk on the wrong surfaces (ie: concrete and sidewalks and the only places there are to walk in my town) I'll dislocate my toes and screw up my knees and limp for the next 3 days. But I've got to keep this medication-caused weight creep under control -- I'm getting married on Halloween and I want to look like the man my fiancee deserves. And my conditions will only get worse if I don't get proactive now -- this might be the best I ever feel. What I'm doing right now is a small number of push-ups, sit-ups, plank, and strengthening yoga exercises. I also try to pace a mile in my living room at least every other day (now that spring seems to finally be in the Mid-Atlantic I might take my mile outside if I can find somewhere to walk). I haven't been doing either very long, only a week or two. I tried a high-intensity push-ups routine in the winter to work on my shoulder stability but it was too hard on my shoulders and I had to stop; now I am pushing myself to count one more of my exercises every day than the day before. (Today's goal: 15 push-ups/65 sit-ups/45 seconds of plank/4 sets of bridge for 1 minute). I've put visible muscle on my arms and shoulders even though I'm not doing very much, and I'm definitely stronger when my shoulders aren't going haywire, so I guess at least I'm doing my upper body right. My diet is already so restricted by income and allergies that I'm just not interested in paleo (though, frankly, many of my meals are paleo anyway if they don't have legumes or rice). According to my best calculations, because I eat almost no processed food and very few carbs (I really only eat GF bread if I make it, which happens once every few weeks, and I make it with grains-that-aren't-actually-grains so it has a very high protein payload for a relatively small carb payoff; we eat rice about twice a week if that) I'm getting between 1700-2000 calories a day, which OUGHT to make me shed pounds, but no dice. I certainly can't eat less without fucking up my already screwed up metabolism. I'm frankly contemplating adding more meals into my day because I spend a lot of time uncomfortably hungry. The only thing I can think to try is to control my sugar intake. I take sugar in coffee and do eat sweets (mostly chocolate, or in the form of a natural sugar carbonated beverage; occasionally in the form of baked goods I make myself) every couple of days, often when my pain is really high. I had though to try to restrict my sugar intake to 30g a day -- if I put sugar in my coffee it's going to have to come out somewhere else. I've tended to just ignore the sugar content of stuff, presuming it'll all come out in the wash. But it frankly makes more sense to plan for my indulgences since I'm having weight problems. I guess I'm looking for a bit of cheerleading. My fiancee can't exercise with me, though she's very supportive, so I'm kind of alone in my living room walking back and forth (my cat thinks it's a game! I hold a ribbon stick in my hand and let him chase it -- he's getting more of a workout than I am) pretending I am getting closer to Minas Tirith. I'd love to hear from other people with chronic pain how you stay consistent when pain flares up (the big reason I tend to fall off the bandwagon) and maybe hear ideas if anyone has bodyweight exercises that don't involve tons of elbow and knee bending that I might be able to incorporate into what I'm already doing. I'm also looking forward to getting to know people who won't think it's weird that sometimes when I feel really cruddy, I pretend I'm a wounded Gondorian soldier on medical leave, trying to get back in the race so we can kick Mordor in the teeth...
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