Training for any event is time consuming, painful, and tiring, however adding in a chronic illness tips the scales! Most of you know I have Ehlers Danlos Syndrome (EDS). EDS is a spectrum disorder so it affects everyone differently I will speak to my personal manifestation of it in this post.
It is often difficult for others to understand ‘invisible’ illnesses. You can look and “Assume” that someone is ok, but you really never know. I have seen many facebook reposts talking about these invisible illnesses, but no one other than the ones suffering can really understand. For example, society gets mad at the mom that is letting her ‘bad child run around the store’ – well you didn’t realize that he has Autism. You hear someone has Crones disease, and you just think “so what’s that? You just have to go the bathroom all the time?” Or EDS, “oh you can do party tricks, how cool.”
We get blamed for being hypochondriacs, pain killer seeking individuals, or just ‘fakers.’ There was an article in Maxim that just TORE through the EDS community. They said “5 diseases we’d think it would be cool to have.” Um, ok? How about you don’t wish a disease or disorder on ANYONE? They eventually retracted the article and posted a link about awareness. They did not post anything about the other disorders.
Bottom line is it’s not fun to have EDS, it’s not curable but you have to find ways to deal with the body you were given.
You can read about my EDS issues in some of my other posts if you want to know more:
- Reason for my Migraines
- Rebuilding Humpty Dumpty
- I'm a Triathlete and I have EDS
- You can have EDS and be Mild
- All I need to know I learned in
My body is schizophrenic. I have a strong athlete in here and I also have a weak, cranky, pile of mush. I have to battle which one gets to come to the surface on a daily and sometimes hourly basis. I don’t bitch about my pain, because I know there are others out there that are worse. I am thankful that I can be as active as I am. I can still walk, work, and function, so it’s a good day! I am in pain probably 98% of the time, (as most if not all people with EDS are). I am usually a 2 on the 10 scale all of the time, but sometimes it can get up there! As you’ve seen in other posts, I’ve done triathlons with Migraines (7 or 8). Sorry Nike, JUST DO IT! If I gave in to the ‘mush’ side of my schizophrenia, I would be nothing.
Having a chronic illness means you need to be HYPER-aware of your body. I have learned to tell the difference between a sublux and a dislocation. I know what a ‘turned off’ muscle is. I know specifically when different joints are out of place. I know when to push and when to sit by and let “Mr. Mush” hang out for a little bit.
I have TEAM LAURA that works with me. I see a chiropractor 2x a week; a massage therapist once a week, I have a triathlon coach, a master swim coach, physical therapist, cycling partners, workout partners, EDS support group, cardiologist, primary care physician, rheumatologist, neurologist, sports medicine orthopedic physician, and a very forgiving husband. Even though I have TEAM LAURA, I am alone.
Each day presents its struggles. I get up early (4AM) and hope I don’t have a migraine. Yes, this is daily. If I pass the migraine test, the walk down the stairs will tell me what joints may be out of whack Sometimes I can put them back or I know I can just deal. For example I have some bones in my feet that lay on top of each other. I can’t put them back, nor can I walk on them. If that happens, I have to reconfigure my workouts. Can I swim instead of running? You can’t just give up and go back to bed, figuring out the contingency is best!
Next, nutrition! I am still working on this, but many (if not all) people with EDS have some sort of digestive problems or dietary restrictions such as the gluten allergy. I personally am sensitive to whey protein, and this REALLY puts a damper on any of the pre-made sports nutrition. It took me a long time to figure out why I would get tight chested. I have to eat things that won’t bug me, I have to be overly conscience about my fluid intake, and I have to take a million supplements and/or medications. If you looked at my medicine cabinet you would think an 80 year old lived there! I take 14 pills a day that I had to put in a DOG pill container so they would fit! That’s not including any adhoc pain meds, migraine triptans, or asthma meds. (I have athletic induced asthma, no idea if that’s related to EDS, not that it matters).
Once I determine if I can get out of the house, I embark on my training day. I had to learn several techniques for each sport so that my entire body was IN LINE. An EDS body has basically no ligaments. The ligaments are like worn out hair scrunches so the muscles are forced to do all the work.
I attended a seminar with Coach Al Lyman, and he spoke about the importance of body alignment for ALL athletes. My thoughts on that are “well duh.” I watch people swim, bike or run and think “MY GOD YOU ARE WASTING ENERGY, you look like a 5 wheeled car.” I have no choice but to watch form in EVERY movement. He also said that “people aren’t born with IT Band syndrome” – well I kinda was born with it!
My IT band is a source of contention. It tries to counteract all stabilization for my entire body. It can get SO tight that I can’t even touch it. With EDS, you can’t stretch like ‘normal people.’ A normal stretch would pull out joints long before the muscle was stretched, so we have to look to alternate solutions. I see a massage therapist, use a percussion massager, biofreeze, or just suck it up!
Prior to my EDS diagnosis, I was in physical therapy for what was they said was as ‘hip bursitis’ I discovered that my hips move out of socket no matter WHAT. Slow deliberate movements would even push them out. I discovered that with my EDS my hips will NEVER work properly and I need to consciously KEEP them in line. I have to think about my hips, legs, feet, etc with EVERY step or they will swing out (I look like I’m being sassy).
I work on strength training but it has to be so careful and deliberate. I cannot do a situp or anything that requires me to pick my head up off the floor. This causes the vertebrae in my neck to move and causes almost immediate migraines! I can’t do pushups, or things like downward dog because my wrists are very loose. I have found modifications to most everything, and continue to work on small incremental strength training. It sucks because I am stronger than the weights I use. I was totally embarrassed at a bootcamp once because someone asked “who the hell brought the 3lb weights?” –Sure I can lift more, but it pulls out my elbows before it gets to the bicep! I’ve learned to live with the funny looks and just do what I know I need to do! I wish my bones would let my muscles do more, but it is what it is! I have to learn what WORKS and keep pushing along that line, not the line someone else thinks I should do!
Most people don’t get it, they say things like “well you could do a situp if you just use a towel.” Or “just work up to that 10lb weight.” They don’t understand that it’s the ligaments not the muscles and I have to be super careful if I want to continue down the path of fitness. Even most physical therapists, personal trainers, or even physicians are clueless about EDS. They think pushing is good. You REALLY have to know your body!
I have learned the technique of Chi Running. Let me tell you, this is amazing. Even if you don’t ‘run’ check it out. It will help you move without as much effort. It keeps everything in line and eliminates cramping when you’re doing it right. There is no way I would ever be able to ‘run’ without this technique. Running is very difficult for me though, even with the Chi Running. I have to think about all the form issues (am I aligned, mid foot strike, peel up my foot, circle rotation, lean, arms, etc). BUT, I also have to think about my hips, are they pushing out to the sides? Is my neck out of place? Are my shoulders falling down? In Chi Running they teach you to relax the shoulders, but if I relax mine they will be at my elbows, so I have to hold them. Each step is very deliberate and thoughtful. It is quite easy to forget a piece, as with EDS you really have to think about EVERYTHING that most take for granted.
On a different note, cycling is awesome! I love it, I love distance riding and I also love spin class. I didn’t used to like it though.. I discovered that there are different types of spin bikes. The regular ones like the Schwinn are terrible for me. I need to be in almost perfect alignment or I will pull things out of place. The Keiser bikes are awesome. I can get myself in an aero position without pulling anything out. My legs rotate nicely and with the SPD pedals, my feet stay where they belong. The only time I have to think about things is when I stand up, then my crazy hips slide out. I have to think about keeping them in. I also have to think about my shoulders, same as the running problem. If I just let them go they will be way out of place.
As far as outside, I love my triathlon bike. I used to have a road bike but using the road bike handlebars would just kill my shoulders and wrists. I was lucky enough to find a really awesome Tri bike, and then I spent many, many hours in the saddle with a professional bike fit. I recommend this to all cyclists, but more importantly to my fellow EDS peeps. There are such slight adjustments that can be done that will make your ride so much better and not hurt. Standing next to the bike and putting the seat next to your hip is NOT a fit. Measuring angles, measuring your rear end, etc are so important to make it ‘FIT’ perfectly. You do not need a giant puffy seat either, that actually can cause LOTS of problems. You need a seat that fits your butt. A big seat will make you work harder, the legs and hips have to circle around this giant thing. A proper seat (saddle) will allow your legs to move freely. It truly is amazing what happens when you are FIT in your bicycle.
I love riding, 50-60 miles WOOHOO. Thing is, I am slow, but I’m okay with that - I have to be! I am out there, doing it. I get caught up being pissed off that I’m not as fast as my friends. I often feel bad for making my riding mates slow down for me, but I eventually have to think “hey they choose to ride with me and they know what they’re getting.” The ones that would get annoyed don’t ride with me anymore. That one took a while to get used to, but it really is a catch 22!
On the other hand, I can swim with anyone. The pool (or even the lake) is a contained space so speed doesn’t matter! This is my strongest sport. I could swim for days I swear. I’m just not FAST. Also like Chi Running, there is a technique that focuses on alignment and efficient propulsion through the water. “Total Immersion” swimming is AMAZING. I’ve been doing this for years. If I had to swim the standard way of teaching swim, I would be PULLING through the water. With EDS, I cannot pull. I would pull my arms out before 3 laps. With Total Immersion, my arms simply rotate through the water and there is no undue stress. I believe everyone with EDS that is capable of activity should try TI swimming!
Like I mentioned in the beginning, my body is schizophrenic. I never know which one is going to show up. Weather affects me more than most. Sure you will hear people say “eh it’s going to rain, my bones hurt.” Well with EDS you are a walking barometer. High pressure systems are the best, it’s like the earth is giving you a hug and holding things in for you. Low pressure systems SUCK. This isn’t really what happens, but it feels like you are put in a zero gravity chamber and your muscles just float away. As they expand, nothing works, joints slip even more, migraines are prevelant and it typically means extra pain. Sometimes, such as when we had the Hurricane last year, the pain is just unmanageable and Mr Mush takes over. What really sucks is that once the system is gone, I don’t go back to normal, it’s like the system sucked out my strength and it sets me back WEEKS in training.
This is very frustrating as I am working VERY hard to get strong, but it is a vicious cycle that all of us with EDS fight. I know what my goal is, and I just have to work harder than some others.
I’m ok with it, I know what I have, I know how to deal with it. Sure it sucks! I don’t tend to complain too much and this post really isn’t a ‘oh whoa is me’ post, but its more to raise awareness and to provide some support to my fellow EDS peeps!
Just keep plugging along and hope for the best.
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