What started as stomach upset was the beginning of my medical problems. A severe stomach-ache for three days in May last year turned out to be the beginning of my misery. This was followed by joint pains especially in my shoulders and pelvic regions.
My lower back and waist region were terribly painful too. All over a sudden walking became a nightmare; there was pain all over my body. A five- minute walk would leave me out of energy, out of breath, and difficult to take the next step. Eventually I could not walk without support.
I couldn’t figure out what was happening to my system. I sought treatment in different hospitals doing this test and that. Unfortunately, my condition was misdiagnosed. That means I was taking wrong medication and therefore not improving.
As time passed, I became weaker and weaker. My limbs started swelling and my face too. But the most devastating thing was the pain all over my body. My family members and friends kept wondering what was happening to me and I too was wondering what was happening to me.
Since my health was deteriorating every single day, one doctor recommended admission in hospital. But even here it was the same story, misdiagnosis.
The doctor who treated me said I had protein deficiency and I was put on human albumin. Again, no improvement. A few days later, another terrible misdiagnosis, the doctor said I had stills disease, a form of arthritis.
I was kept on steroids and nothing positive was coming forth. I forced myself out of hospital, I had to be discharged because my family could not even keep up with the bills.
I was anxious to know exactly what was ailing me because some people even started to entertain the thoughts that I might have been bewitched. I was scared. But my luck came through one afternoon when my brother-in-law sent me to a doctor at the Aga Khan University Hospital for proper check up.
When the doctor saw me and listened to my medical story, he immediately knew what I was suffering from. He said I was suffering from either dermatomyositis or polymyositis.
Within eight days of my stay at the hospital, it was indeed established I was suffering from some form of myositis known as dermatomyositis.
I can say that this condition almost crippled me. You become in a way paralysed as most or every fiber of your muscle is destroyed. Also, I developed problems in swallowing (a condition known as dysphagia), walking, standing, flipping through pages, writing, combing my hair, buttoning my shirt, touching my ears, touching the top of my head and difficulties in talking among many other things and this can be quite devastating.
It is more than one year since I was diagnosed with this rare medical condition that few know about, an auto-immune disease whereby your system fights itself. Good enough, there are combinations of medicines that can be used to control it and no one knows for how long one needs to be on them.
The disturbing thing is that the medicines have side effects that can lead to other life threatening induced medical conditions too. For instance, I developed induced diabetes. One is also at risk of getting cancer – osteoporosis.
Having accepted this life threatening condition, I have the mental strength to handle it and it never scares me anymore. Presently, I am involved in creating awareness on all forms of myositis through the:
The Myositis Foundation-www.themyositisfoundation.org