Balbir's Story

I was diagnosed with Lupus in 1996. Before that I was experiencing new symptoms every day. I had to endure loads of checkups, blood tests, x-rays but no one was able to pinpoint the source of the problem. I went from doctor to doctor with no exact answer. They knew from my ESR report that there was something wrong but they did not know what was causing the ESR level to go so high and what the problem was. I was born in India and I have tried home remedies, homeopathy and acupuncture.

At that time I was experiencing symptoms such as mild temperature, feeling very tired, joint pains and bad headaches. It was very hard to keep up with my studies, which I was doing during that time. When I look back at the early puzzle of my illness, I can say it started after puberty because I had the same symptoms then: feeling very low, tired and the symptoms of flu every month, accompanied with temperature.

I had been seeing the doctor every other week in London. After a few tests, they said I was anaemic; the iron level was very low. I just tried to get on with my life.


In 1984 I gave birth to a boy. All through the pregnancy I was very sick. Going through with the pregnancy was a very hard time for me, but I was able to get through because I could see a light at the end of the tunnel. The baby gave me hope to live, as I was so ill and couldn't get out of bed after birth, nor could I eat anything. After that, the same routine continued; new symptoms, new pains, more tests and visiting more doctors. Then my ESR level went so high that the doctor put me on painkillers and steroids which provided me with short-time relief as the pain was really bad and the weakness meant I was unable to spend time with my child. But seeing his smile kept me going.

The doctors who were doing the investigation were still unable to find out why I was feeling how I was and just gave me trial medication. Then in 1987 I gave birth to a girl and at that time it was much harder than before as I had to be put on a drip every two weeks afterwards. Then one day the doctor said that even though they didn't know what was wrong with me, the blood problem could affect the baby by handicap or paralyisis. On top of the symptoms, this news was really heartbreaking. But I gave birth to a baby girl and she was healthy and fine. I felt so relaxed I forgot about the pain. After that I got very weak and was stuck in bed again, and couldn't do much, I became very anaemic and was on injections for iron.


In 1990 we had a tragedy in the family and that triggered my symptoms again. My condition took a downturn for the worse and I went into a depression. The other symptoms got really bad and I was in and out of hospital. The only thing that kept me going was that I had to pull myself together for my children. The doctors still did not have a clue why my ESR level was going high.

In 1995 my iron level went extremely low. I went for a blood test to the hospital and fainted there. They admitted me and gave me a blood transfusion. After a week I came home and had a migraine attack and went back to the hospital. The same day I had fits which happened for the first time in my life. I was unconscious for days. They did more tests and scans. I caught the helibacteriapolia bug while in the hospital. I was on treatment for that bug for a week, during which time they did more tests which resulted in them finding out that I had connecting-tissue disease and maybe lupus. They got serious then and kept an eye on me for that.

The doctors then put me on anti-malarial tablets and steroids. Once out of the hospital I went to see the doctor for a follow-up appointment. That day the doctor said that I had lupus. The doctor didn't thoroughly explain to me properly how he or anyone else could help me, just handed me a leaflet. When I left I didn't have any hope, no desire to return home. I had to pull myself together for the children, I had to live. That period of time was emotionally very hard for me to go through. Then I went into a depression again and the symptoms did not calm down, there were new symptoms every day. I went on a holiday because it was the only time I could get my mind off the illness and relax.


In 2002 my body started getting numb. By night the sensation of numbness would increase, thereby not allowing me to stay in one position for more than 10 minutes. Day and night I was tossing and turning, the same struggle. One day I had a phone call from the doctor and I was admitted into hospital. More tests were conducted and I was diagnosed with takyausi vasculitis artiritis. That time I stayed in the hospital for more than a month. It was first time the doctor put me on chemo therapy. It was incredibly painful ordeal to endure. I was on a course of Cyclophosphamide. I had a bad experience with the symptoms of that medication; it was more painful than giving birth to the baby. Afterwards, every six months I had to have a course because the problem was not settling or getting under control. I continued having this treatment for five years, changing other medication slightly.


Since that struggle the doctor put me on Mycophenolate tablets, that medication suits and works for me, giving me relief and I hope it works for others. The doctor said they can't give me more Cyclophosphamide because it would poison my body so it was fortunate that the new medication suited me. I am still on it, still taking steroids and many more tablets. But from the Methotrexate tablet I experienced really bad symptoms. The medication has changed me as a person. Now everything is under control, my symptoms are settling and some of the pain relieved. I have a deeper understanding of myself and the illness, which in turn makes me more relaxed and I have had much of this help from the Louise Coote Lupus clinic.

I had an operation in September 2008 for the replacement of a heart valve. With this leaky heart valve I had an angina attack two or three times and it had an impact on my lifestyle: I couldn't do things I liked doing, as I would experience shortness of breath very easily. Since I have had the operation I thought it would be one less problem but that was not the case. The doctor now put me on warfin tablets for life.

Despite all this I still try to enjoy myself and stay happy. My message to others is not to lose hope and stay strong, as there is definitely a light at the end of the tunnel. It comes in many forms, but for me it was my husband and children.