How do I teleport back to winter? I miss the clear night skies, the hissing wind on a July afternoon and better health.
Season change is always torturous for me, especially in the spring and summer months. Since spring began, I have had minimal pain relief as warm weather causes my Rheumatoid Arthritis (RA) to flare up and it will worsen in summer.
Rheumatoid arthritis (RA) is a chronic inflammatory disease that occurs when the immune system mistakenly attacks healthy cells, tissues and joints, causing inflammation.
They diagnosed me with it at only seven years old in the year 2000. I was in class writing when I could no longer hold a pen in my hand, something I had done effortlessly many times before. My body had tremors all over, coupled with a stabbing pain in the joints.
My teacher then called my mother, and she rushed me to the doctor. Along with RA, they diagnosed me with rheumatic fever, another inflammatory illness that affects the heart and blood vessels among others. The doctor didn’t prescribe long-term treatment for RA. I was only on Penicillin for ten years to prevent infection to the heart.
Nothing prepared me for drastic change and the havoc that occurred thereafter. I didn’t have much of a childhood as I spent more time at the doctor’s office than I did playing outside. Constant illness also meant being away from school often.
They branded me as the laziest child at home because of ignorance about the disease. It was unfathomable how a child could have an illness that usually affected the elderly. They accused me of using it to get out of work.
Having RA causes one to be in a constant state of fatigue. Since I couldn’t be physical, there was no way to remedy that. I pushed myself to do what they required of me but as I grew older; it became daunting.
In 2008, again at school, I experienced excruciating pain in my chest, which doctors later diagnosed as Rheumatic Heart Disease (RHD). My heart was inflamed and in trying to bring down the swelling, the medication caused damage to the kidneys.
My health deteriorated, which forced me to quit school. I was devastated but couldn’t accept defeat. I forced myself until my body couldn’t anymore. When dealing with illness, depression is inevitable.
As young as I was, I couldn’t fulfil my dreams like my peers. I couldn’t do things I took for granted, like holding a cup in my hand, getting out of bed, and brushing my teeth.
I spent over four years after the RHD diagnosis, going to hospitals, trying to manage my illnesses. Treating RA flare-ups worsened the heart because doctors prescribed Prednisone to treat inflammation. They reached a point of defeat if you will, they no longer knew what to give me.
I was in remission for about three years, which granted me time to work. Hope is a funny thing. It blurs the lines and the coldness of truth. I knew that these diseases are incurable, but I hoped that they would stay away forever so I could live with no inhibitions and countless trips to the hospital.
20 Years On
It’s been 20 years of pain, of my body attacking itself; you would think I’d be used to it. The older I get, remission is short-lived. This year I’ve had only three months without pain. Last year it was six.
I turned 27 this year. This should be the prime of my life, but illness robbed me of the opportunity to enjoy that fully. However, I’ve stopped being unkind to myself for not achieving all I wanted. It’s not a lack of effort that caused that but a long journey fighting for the survival of the body at war with itself. My success or pursuit of it will be intermittent.
In January, I went to see my doctor after months of crippling pain. Getting out of bed, standing for over 5 minutes, and sleeping, were all difficult to do. I was losing weight.
He said, “You know you’re a difficult patient to treat.” And gave me prednisone and painkillers, which only worked for a week.
A month later, I was rushed to the hospital for angina.
Managing Rheumatoid Arthritis
Managing RA is hard without medication. There are days when I wish for death because of unbearable pain and the inability to do with ease, everything I take for granted.
I started running in 2017 to cope with depression. I had avoided it out of fear of illness. Three weeks into it, they rushed me to the hospital because of angina. As soon as I got better, I continued running. It helped with the fatigue, and I experienced less inflammation in the joints.
I exercise as often as I can, well, when the body permits. I do yoga (or at least try), run, and other simple home workouts.
I follow a plant-based diet and have been for almost three years, ensuring that it is as low acid as possible; recommended by my doctor.
While these do not guarantee ultimate pain relief they help in controlling its severity and constant trips to the doctor.
As summer fast approaches, so will my pain heighten, but I am better prepared for it than in the previous years. I’ll continue to focus on what I can manage and take each day as it comes.