3 Things That Help Me Cope With AxSpA
The tricky part, for me anyway, of learning to manage a new AxSpA diagnosis is figuring out what works for me.
My support team has given me plenty of advice. The problem is, it’s all very general. The disease affects everyone differently, so it’s been a trial and error process to figure out what helps and what hinders.
Being disciplined in what I eat is the most crucial part of managing my inflammation. On tough days the temptation to get a fast food burger or other forms of junk food are all too tempting, but without fault, it leaves me feeling even worse once consumed.
My biggest trigger is preservatives. The more processed the food, the worse it will make me feel. Avoiding pre-packaged dinners or other boxed food is key for me to feel as well as possible.
I have developed two key rules to manage my diet.
The first rule is to be able to pronounce the ingredients on the label. When the ingredients look like alphabet soup, it is likely to make me feel worse.
The second rule is to make it myself. Quite simply, if I can make it at home, I know what the ingredients are.
Some days my diet discipline lacks, and when that happens I eat some fruit and drink lots of water. In the summer, the fruit is very easy to come by. In the winter months, I make sure there’s a stock of frozen blueberries and mangoes on hand.
Move it or lose it.
I have had to completely revamp the physical activities I do, and some days it’s hard to get up for more than 10 minutes. Yet, I always feel better at the end of the day or week if I can find some way to move.
These are my three main exercise focuses now that I’m living with nr-AxSpA.
Stiffness is one of the leading symptoms I get and for that reason, flexibility is one of my biggest goals. I stretch more than ever and I have established yoga and pi-yo, a yoga and pilates hybrid, as staples in my weekly routine.
Bodyweight workouts are also important to keep all my body parts moving. It often includes the use of equipment such as exercise balls or TRX exercises, which allows me to keep strength in muscle groups and the ability to keep them moving. If I’m going to get fusion someday, I’m going to do everything in my power to make sure I’m as limber as possible should that day come.
This focus is partly due to my role as a hockey referee. I need to skate for the entirety of every game I ref. It has also come in handy when I’m struggling. When my pain levels are elevated, the physical and mental aspects of stamina training help me to get through the end of the day.
In addition to my prescribed medication, I have found two alternative solutions that work well for me.
I use CBD quite regularly. It really helps limit both brain fog and reduce pain. I often use it right when I wake up or right before I go to sleep, as these are the typically the toughest parts of my day.
Tylenol Arthritis® is another piece of my management toolkit. It is a slower release than other acetaminophen and it is easier on the digestive system than other alternatives I’ve tried. It was also important for me when I was prescribed NSAIDs as the previous over the counter options I had used interfered with the medication and was no longer an option.
Does reading AxSpA patient stories help you in your journey?