The other day I was thinking about how I wished I had someone giving me tips about living with Arthrogryposis when I didn't know much about it.
You see, this is a rare condition that not many know about, and is not easy to find information, but now I am very lucky to experience my Arthrogryposis from a different perspective.
Because of The dream walker project, I had to give more thought to it than I did while growing up, and that has helped me to be more conscious and to pay more attention to not only my experience but of others as well.
So, thinking about it, I came up with these 5 tips, that are the most impactful in my opinion.
1- Find community
The biggest piece of advice I can give you is to find community. Even if Arthrogryposis is not very common, our family is VERY active and ready to connect. This is where you will find your people, your knowledge. This is where you go for advice on difficult decisions because someone has gone through it and can give you the best sincere opinion. Here is where you find friends that just get you and your experience with a such unique condition.
Community is your lifeline.
2- Listen to your body's needs
Living with Arthrogryposis we are often taking our bodies to the limit just by doing daily tasks, so this is our norm, what we do, and because we push ourselves constantly we tend to keep pushing until is too late and we suffer for it.
I remember when I first moved out of my family home I would do things like deep cleaning in one go and then not be able to get out of bed the next day because I overdid it. But you know, I kept doing it. until I realized that that wasn't helping, I was just abusing my body. So, I started listening to it and learning where the line between pushing and exhausting myself was, and this simple action has made it so much better for me. I can do more by pushing less.
It is ok if it takes you longer, who cares... just please listen to your body, it NEEDS you to do this in order to keep going and functioning in a healthy way.
3- Find your own way to do things
One of the most common issues I find when we visit the AMC families is that everyone is trying to give you (A person with AMC) opinions on how to do something from their own abilities, and experiences. And that is totally ok, mainly if it comes from a place of love and a genuine desire to help. But in all honesty, our minds and bodies are wired differently and it takes a huge amount of creativity to find our own ways to do things, and it only gets better with practice. So. my biggest piece of advice on this is to lock yourself in a room and figure it out. Your mind is your best ally, it has been trained from day one to find ways that work for you and your abilities.
One of my favorite things to witness is when AMC babies figure out how to hold their bottle, some do it with their feet, some with their chest or using both arms, and some others do it against a pillow, but the common thing is their parent's reaction to it, they are always amazed by their child's ability to adapt.
We, AMCERS, are brilliant problem solvers from a young age, and the best thing we can do is use it throughout our lives, and to do so sometimes we need to shut the outside noise up.
We have the answers to our ¨how to's¨ within.
4- Control inflammation
This to me is one of the most difficult to explain, but such an important one, so I am going to give it a go, but first, remember I'm not a medical professional, I speak from my personal experience.
I first learned about chronic inflammation when I was diagnosed with Hashimoto's thyroiditis in late 2015, as I started my treatment for it one of the things I was suggested to give up for a few months was gluten. By then I was suffering from extreme chronic pain in my knees, so much so that I was considering a knee replacement, but then one day I realized that my knee pain was almost fully gone, and I wondered for weeks what happened until I ate gluten again, and the pain was back with force. Talking to my endocrinologist I learned that gluten can be a highly inflammatory food, as well as others like refined sugar, and some of those foods were adding to the inflammation in my already complicated joints. At that moment a new world opened before my eyes.
As I started learning more and more about it and testing it, my body was not only feeling better but the chronic pain was staying away from me. After I few years I started sharing my glorious find with others with arthrogryposis and learning that many that tried were having similar results.
This is something I really recommend giving a try if you live with chronic pain. It takes a while and it's progressive, is not that you stop eating gluten and three days later you have no pain, it took me around 6 months to fully get rid of the chronic pain in my knees, and years to maintain it. Even now, if I eat gluten one time, a few days later the pain shows up to say hi and ask if the piece of cake was worth it, and it's up to me to say if it was or not because some pieces of cake are worth a day of discomfort if you ask me.
This has made such a huge impact on my life that I am about to embark on a three-month food regime to figure out which foods are inflammatory for me because for some milk is inflammatory for others is not a big deal. So, it's all about learning what works for you and how far you are willing to go to live without chronic pain.
If you would like to try this and need a pal that has done it please reach out to me, I can cheer for you and give you some ideas that could help make the process easier.
This may not work for everyone but I highly suggest giving it a try for CHRONIC JOINT PAIN (sadly other random pains still persist)
5- Go with the flow
Living with Arthrogryposis is not an easy task, we have to deal with many things thrown at us from different fronts day to day.
A surgery might come and change your summer plans, a fall can set you back, waking up with fatigue may gloom your day, or a difficult button can ruin your outfit for that special moment but if you learn to go with the flow everything becomes easier. I get that changing your plans is hard and we shouldn't have to but! These are the cards we were dealt and we need to play with them, and just by working on acceptance a difficult moment can become easier. It also helps to know that you are not alone in this and talk to others, and this takes us back to the first tip... find your community.