In Annailo's mind…
Rheumatism is a term for medical problems affecting the joints and connective tissue. It can take years to get a specific rheumatic dignose, monitoring changes in the joints. The doctors cannot quite decide on what type of rheumatism I am affected by, but they suspect it is Bechterew´s disease (a chronic, inflammatory arthritis that mainly affects joints in the spine).
People ask me how it is to live with Bechterew´s, and franky it cannot be summed up in one short sentence. I will share my story here and my way to a better life. Maybe it will clear up a few things for those who are not familiar with rheumatic disorders, or be of advice to someone who has just been diagnosed. Keep in mind, though, that this is my way and my story. What works for me, might not be working for someone else with the same disease.
When the rheumatologist confirmed the diagnose to me, I felt mostly relief. At least I had an explanation to why my body had been acting all weird the last 15 years. I was not a wuss; the pain was real. Later, when it had settled, I was grieving. Which was a pretty natural reaction, I think. Someone tells you that will have to live with a disease for the rest of your life; you can´t just swallow and move on like nothing happened. At that time, the disease had “exploded”. I was not able to hold a cup of coffee or leave the house on my own, and was living with constant pains in the larger joints. My chest had decreased with nearly five centimeters due to inflammations, and was causing painful breathing problems. My back and shoulders were so stiff that I could barely move, and I had to quit a job I truly loved. I cannot even begin to describe how degrading it feels to ask for help to do the most basic things, or to see the begging eyes of your dog and knowing you are unable to take her for a walk. My life was literally put on hold, and reality started to sink in. It was obvious that I had to make some big changes in my life, and I was not sure how I felt about it. But I figured I had two options. 1, I could either sit down and feel awfully sorry for myself – and let the disease destroy me physically and emotionally. Or 2, I could do something totally different.
I chose option number 2. Rheumatism is something I have to live with till the day that I die, but it will not kill me. There are ways to live a worthy life with such a disease. Based on research and conversations with doctors and physical therapists, I started my journey to a better life. Workouts and a diet seemed to be the answer to a better health. My first workout sessions could hardly be called “workout”, but I had to start somewhere. The first weeks I took short walks with my dog again, and started carefully with muscle exercises and stretching. And funny as it might sound, I used Ninento Wii Fitness, as it is based on regaining balance. Besides, it was uplifting to have someone telling me that I was doing good and “hang in there”, even if this person has a computer brain. After a couple of months I tried out aerobics and jogging, and increased the muscle exercises. I also started with a version of Kari Bø´s core wellness program, which I use daily and can strongly recommend.
At the most, I was working out 3 hours a day, seven days a week. Gradually I regained control over my body, my movement improved and the pain decreased. I lost some weight and build up muscle mass that improved my posture. Today my workouts are usually around 90 minutes a day – five-six days a week. My program is a combination of endurance training and muscle exercises for legs, arms, shoulders, abdominal and back. Each session ends with some good stretching.
Most important thing is to bring movement into the inflamed joints to avoid stiffness and pain, and to build muscles to support the back. If my back hurts, I do not lay down. I get on the bike, because I know it is the only way to make it better. If I skip the workouts, I´m paying the price the next day and have only myself to blame. My new saying is: “Pain is inevitable, suffering is a choice.” Today my physical state is better than it has ever been before. My joints are more cooperative, I have fewer painful days, my chest has increased back to normal and the last MRI showed a setback of the inflammations. To be able to jump, run, shovel snow and do other acitivities most people take for granted is beyond words!
As for the diet, I have become a pescetarian (vegetarian that eats seafood) and abstain from meat, sugar, fruit, wheat and other products with acid. Fish has major effects on the joints, and I also take supplements of omega-3 fatty acid. Since I do not eat meat, I carefully plan my diet and make sure I balance vitamines, iron, proteins, calcium etc. I am, however, not a fanatic. Life is short, and should be enjoyed to the fullest. But honestly, I´ve never eaten better and tastier food than I do now. It´s all about planning, and skipping the easy solutions.
The body is one thing; the mind something else. Accepting and settling with a chronic disease takes time. Doctors and others can advice me and support me, but I am the one living in my own body. It is, in some sense, a lonely journey. For a while, I isolated myself completely from the outside world. Friends called me, and I felt I had nothing to add to the conversation. Rheumatic disorders cannot always be seen on the outside of a person, and I found it difficult to explain people around me how I really felt, how it really feels to live with inflamed joints. I have been fed up with doctors, hospitals, medications, workouts, changes and paperwork, and some days I still am. It takes a while to adjust, and combine “new life” with the “old life”. That is absolutely natural with a chronic diagnose. But eventually you accept it, the changes become routine and you see possibilites rather than limitation. Bechterew´s s a part of me, but it does not define me.
I am not telling my story here to brag about my improvement, gain sympathy or to say that this is the cure of rheumatism – far from it. There are degrees of the disease, and it is individual how it affects the body. This is my way, my life, what works for me. I have relatives and friends with different kinds of rheumatic disorders, who have severe damages due to inflamed joints, who are living with pain day and night and who are totally depended on heavy medication. The damages on my spine are minor; it could be a lot worse.
The disease has changed my way of living and it has certainly changed my way of thinking. I have tried and failed, and eventually found my way. Believe it or not, I am somehow grateful for all of this. Before the diagnose, I lived a less healthier life for no good reason at all. I was lazy and ignorant to the signals my body sent me. Now I have no choice but to take care of myself, and I am actually grateful for that. I am bouncing around – just because I can. One knows how to appreciate the basics; it should not be taken for granted, but enjoyed and appreciated!
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