"From the bitterness of disease man learns the sweetness of health."
– Catalan Proverb
We need to be careful of letting the things that we cannot control take control. There are many things in this fight that we cannot control, and the odds often seem heavily stacked against us, but that doesn’t leave us powerless in the fight. We can CHOOSE to do what is within our control to try and counter all that's happening to our bodies. Regular exercise and a healthy anti-inflammatory diet are essential in our fight! Let’s face it, there are so many symptoms that come with Ehlers-Danlos Syndrome, Chiari Malformation, and the other comorbid conditions, that it can wreak havoc all over our bodies as a whole. Our doctors might not understand it, but for those of us living through it, the effects are undeniably real. It’s hard to move when every part of your body hurts. It’s hard to eat right when the pain of cooking is easily avoided with convenience foods. However, many of the things that make our conditions worse involve an overall lack of mobility, deconditioning, and poor nutrition. Regular exercise and proper nutrition (including an anti-inflammatory diet) really can help us in our fight! Because the truth is, with as bad as things are, they can get worse, but they also can get better and we want to share ideas on how to try and do just that!
The single most important item within our control is our attitude! We don’t have to ignore our reality or turn a blind eye to the negative aspects of our conditions to have a positive attitude. We can choose to frame things in a positive light. For example, if I am no longer able to walk as far as I could this time last year, I can look upon that situation with an air of defeat… or I can remind myself that I was also unable to walk that far three years ago, but with determination, with time I made progress! It may be unfair that I must start over again, but I am worth every ounce of effort that it takes to do so. I can acknowledge the unfairness, and then choose to focus on making progress towards my goal. A positive attitude is not going to will Chiari or EDS away, but it can improve our experience of living with these conditions.
While exercise is difficult, for most of us it is not impossible – in fact, it is imperative that we try and increase our movement the best that we can! The complications and pain associated with failing to move are astounding. If you think it’s bad now, it most definitely can get much worse. Try finding a comfortable activity such as walking, tai chi or water aerobics – whatever you choose, make sure that it’s low-impact (meaning one foot always stays on the floor). Keep in mind where you want to be but realize that it’s going to take time to build your way from where you are. So, don’t let your starting point discourage you. Set physical goals for yourself. If you’re doing a little more than you did yesterday, last week, last year, you’re moving in the right direction and it will get easier if you keep moving in the right direction, so don’t let yourself quit! If you require a break, take a day off or shorten your goal for the day, then get back to moving. Your persistence will increase your endurance and overall health!