Elhers Danlos Syndrom
I don’t want to write this and I already know this may open up a discussion that I would rather not have. Maybe it’s time it gets discussed though. I have been hiding from a topic for quite a while and I tend to dodge it or say the minimum when the topic comes up. I am not trying to be deceitful by any means but I know where the conversation will end up and it is very complicated.
Here’s the topic. I deal with EDS (Elhers Danlos Syndrome) and I always will, plants or no plants, it’s genetic and it is not going away. Fortunately the genetic variation that I have only affects my connective tissue and makes my joints hyper-mobile. I am very fortunate because it could be much worse as the disease has many more serious types. (Here is my story if you don’t know it)
I have been connecting with many people with EDS lately and they want to know more about a plant-based lifestyle. I am 100 percent sure that a plant-based diet will significantly help them. Just the fact that a PB diet is an anti-inflammatory way of eating is enough reason that any EDS patient should switch their diet tomorrow. So, why wouldn’t I want to talk about EDS? My doctor was amazed that I wasn’t in a wheelchair ten years ago and here I am running ultra-marathons with a connective tissue disorder on joints that were rendered useless in my twenties. Why am I dodging this topic instead of shouting this from the rooftops?
There are two very specific reasons why I don’t like to talk about EDS with regard to a plant-based lifestyle and on a personal level with regard to rigorous activity. Let me just get this out of the way.
- Will a plant-based diet cure EDS? No. It will not. There I said it.
- Is it the best idea to run, ride, and lift with destroyed joints that are missing ligaments, have craters of missing surfaces, and have bone fragments floating around? No. Probably not. There I said that one too.
So in a conversation, this is where we will end up, a plant-based diet won’t cure EDS so don’t bother with changing you diet. And I shouldn’t be hammering on my already injured joints so stop moving and keep your body quiet. And…….. that puts me right back on the couch at 400 pounds not being able to move again. And gives everyone a chance to “blow holes” into everything that has happened to me. I dodge this stuff not to justify MY actions. I am very comfortable going against the grain. I dodge it because people will take a detail out of context and make it fit exactly the scenario that they need to be irresponsible with their health. Then, they take away the significance of a plant-based diet and fitness all while they hurt a cause that is near and dear to my heart. So let’s unpack this a little and I really want to focus more on the second question because this is the one I feel like people are waiting to tear me apart with, in fact I can tell you I have had an argument or two about it. Let’s get busy.
- A plant-based lifestyle can heal so many chronic diseases, especially the ones that stem from inflammation. Plants can rid people of everything from diabetes and heart disease to certain forms of cancer. Plants are a miracle for health and I am confident that a whole food plant based diet saved my life and I have no doubt about that. Will plants cure everything? Absolutely not, and even as passionate as I am, I will be the first to say it. BUT, that is not a reason to discount what they can do. I actually wrote about that a while ago, if you have time give it a read. I have EDS, I was born with it and I will die with it regardless of my diet. However, my symptoms are 95% gone by eating a WFPB diet. Pain, inflammation, and atrophy were really what made my life suck and all three are virtually gone. I do still deal with very short bouts of inflammation brought on by running but it is very short lived. I am willing to bet that there are numerous people with the same results for many other diseases. While plants can’t cure everything they can sure make a sizable difference in overall health and make many incurable situations much more manageable.
- I have been struggling with some nasty flare ups of EDS lately, so much so that I went and got an MRI done on my ankle and foot to make sure that it wasn’t fractured. When I called for the results they said that there were no visible fractures so I immediately snapped, “great, thank you so much and have a great day.” The PA said that I needed to schedule another appointment because I had at least a dozen other things going on in there. I’m not sure what this all means other than I have some bone fragments floating around, a few good sized craters in my bones, and another ligament missing.
A Frightening Reality?
Without getting into details I can tell you that my shoulder and ankles are a couple of things that are constantly giving me issues. The joint damage was extensive 20 years ago before I was carrying around 200 extra pounds and that just did further irreversible damage to my already weak joints. I totally understand why people don’t get why I want to constantly push my body for more. It is almost as it seems that I am ungrateful for what I do have and I am not content so I want more and more. I promise that nothing could be further from the truth. This is what brings me to the real purpose of why I am writing this blog post. Everything so far has been a formality of sorts that I felt obligated to write. I answered the questions honestly but there is something that seems to hang up on closing these ideas down.
As the title says plants didn’t fix everything and I’m scared. Lately, I have been getting scared more often as my body has been flaring up more often. I have been doing some deep searching and intense reflection and I think my fears have changed drastically. When I started regaining my health I couldn’t stop thinking that this was a short ride and I was just waiting for it to end because it was too good to be true. Ya know, it’s like when things are going so good in life for so long you can’t help but think something tragic is headed your way. I realize it’s a flawed way to think but I’m sure I am not alone.
So through the first year or two, I thought, “is this as good as it gets?” but it just kept getting better. Then I would see someone that gained all their weight back and think, “how long before that happens to me?” As time went on I realized that this is actually the new me and it will always be who I am. I can say with 100 percent confidence that I will never be a 400 pound addict ever again. But that “flawed” thinking is still very much alive with regard to my chronic connective tissue disorder. And I think it is a pretty valid fear.
I can remember falling on several occasions and wondering if this fall would be the one that breaks the camel’s back. Is this the one that ends my mobility? Was this the last time I walked on my own power? The fear was real and so was the likelihood of me never walking unassisted. It always lingered in my head. Fast forward… I hit the 5k mark and was amazed. Is this it, is this the limit? I worked a bit longer and became a bit stronger and hit the 10k mark. Is this it, is this the limit? I worked a bit harder and then I had a setback. Maybe that was where it was supposed to end. But dang, what a ride! I mean, it is so crazy to go from hardy walking to a 10k run.
What more could I have asked for? I would get through one setback and then reach a new goal and incrementally worked my way to the ultra-marathon level. My perspective changed a million times during the process. My fears did as well. The fear of returning to the couch moved to the fear of never feeling a half marathon finish. Every time I laced up I wondered if it was the last time I would ever run. I was afraid and the fear was validated by the x-rays and MRIs that had shown the extensive damage to my knees, ankles, and hips.
The problem was that my fears were aimed at all the wrong reasons. If it indeed was the last time I laced up I was petrified I wouldn’t get to that next accomplishment. I was afraid I would never run a 7 minute mile or what if I couldn’t stumble through the finish of a 100 miler? This has been the basis for that fear until just recently. See, I have been struggling more than usual with my feet and ankles. Sometimes I can’t even put weight on them. Lately, after a run any longer than 13 my left ankle swells uncontrollably and my right ankle has bone fragments floating around and is be very painful.
When I really dug deep inside my thoughts, I realized that it wasn’t the numbers anymore and that I am more than content with my accomplishments on a “less than perfect” body. The burning passion I have for lacing up comes directly from gratitude. If you follow me than I am sure you have heard me say that when I lace up I imagine myself laying down stamps of gratitude wherever I run. Running, for me, is a way to pour out my soul. It is a celebration of sorts, an ironic dance to move me across the earth on my own power and free of braces.
Running is my way to sing my song and say hallelujah with my feet. It sounds crazy but if you have ever been faced with the certain fate of a wheelchair then you would understand. I am afraid of losing that outlet. I am petrified that I won’t be able to watch the sun rise as I work my way through a trail on a beautiful morning. I am scared that I won’t get those sacred moments of time alone to search my thoughts and reflect on everything I have been blessed with. I realize that there are many other ways I can do every one of those things and maybe I will figure it out someday. For now, I can still run so I will. A day may come where I can’t and that scares me but fear no longer runs my life. The fear is real and valid and is the exact reason why I lace up when some folks think I shouldn’t.
There will be a day I can’t run, I know that, but that day is not here yet. So, when you see me struggle, I appreciate your thoughts and words but please understand I am doing what I love and that whatever struggles I am going through right now can’t compare to Fentanyl withdrawals, brace burns, or needing help to get dressed.
Attitude!
Fear can be a liar but sometimes it can keep you honest. There is a chance that tomorrow is the last day I ever lace up and go for a run. I may never cross another finish line and that’s perfectly fine with me. If my value comes from a finish line, pace, or medal, I have entirely missed the mark. What should scare me is the idea of wanting to be known for my accomplishments instead of the person I am becoming in my journey. If I am afraid of anything it should be that I may not reach that one more person to help because I wasn’t trying hard enough. See, a legacy of miles, pace, and finish lines is fantastic but if my legacy is the simple idea that I was able to help people and making just one person’s life better than I have accomplished my mission and life is good.
So after all this babbling and ranting I have to be honest. This entire post came from one small thought that I wanted to put on a meme and post. Just one line brought a flood of thoughts swirling in my head. So, if you read one, and only one line of all this nonsense please let it be the following one.
Plants cannot fix everything but your attitude can!
Lemme say that again,
Plants cannot fix everything but your attitude can!
Eat plants and move your body, all ya gotta do is a little more than ya did yesterday
Thanks for listening,
-Tim
oh, one last thing!
I have a very basic recipe book out on amazon. Click the link below. If you don’t have the 2.99 for the eBook, you can’t use the kindle app, or you just don’t think it is worth it send an email to fatmanrants@gmail.com with the word ‘book’ in the subject line and I will get a PDF version free of charge. Money should never get in the way of good health!
