Lupus - a personal view


I sat observing my right foot wondering why it didn’t fit comfortably into my pretty, fuchsia-red shoe any more. There was a drawing sensation in my foot’s tissues and I couldn’t make out my ankle anymore.

What could this mean? It was unlikely that it had anything to do with heart disease, as I was still a spring chicken – or only just moving into the summer category. I was 45 and feeling relatively fit, once I took time to look. There was though an undeniable weight of tiredness burdening my shoulders, which sometimes made living like cycling uphill in first gear.

Once the swelling of my foot had spread to the other foot and to both knees I sought medical advice.

I was diagnosed with SLE, Systemic Lupus Erythematosus. My doctor was unwilling to explain the meaning of those words, so I went to the library to find clarity. It was not easy. One book told me that I would die in five years time. I knew immediately that this couldn’t apply to me, since I didn’t feel THAT bad. The book was written 30 years ago.

SLE is an autoimmune disease, where some white blood cells mistake body cells as intruders and then attack them, causing inflammation. This inflammatory process can appear almost anywhere in the body. I was “lucky” only my connective tissues were affected.

Anyway, I took my pills, Diclofenac, but they gave me no relief. My legs, the knees, were so stiff I needed to hobble while bending forward. Once I caught my reflection in a shop window and wondered who that old woman was. I became more and more fatigued, driving a car caused me pain and I had to quit my job. I had been nursing in a Care Home.

I did some research on Lupus and found a support group. One of the members there suggested that I saw a Rheumatologist in London who specialized in Lupus. I did. I was put on Hydroxychloroquine (Plaquenil) and then slowly improved.

Around this time my husband got a job in Malaysia, his country of birth, and we locked up and went to live there for four years.

Being a Lady of Leisure I started to attend yoga classes. With this, my life began moving into a new direction. The first “happy side effects” of doing yoga were an increase in energy levels. Then followed more mobility in my joints. I also discovered how to “inhabit” my body, make friends with my breath and listen to my soul. Life was rich.

Seven years later I suffered another flare up. This time my hands and wrists were also involved. Cats and dogs weren’t my favourite asanas anymore. I received the same treatment I had when Lupus begun and slowly, within 12 to 18 months, I improved again.

This cycle has been repeating itself ever since. My last flare happened two years ago. Unfortunately, recovery is quite slow, maybe because I am older. I am now 72 years old.

Over the last 25 years practising yoga with its comprehensive and complex system has been a life line for me. After each flare up I regained mobility in my joints to various degrees. I never gave up on yoga even though I had to humbly modify many asanas to cater for my ability. Mental yoga was less of an effort and I did a lot of it. Meditation and pranayama were gifts that I received gratefully.

At one point on my yoga journey I decided to “give” yoga and enrolled for the instructors’ course at the Yoga for Health Foundation at Ickwell. I had many fulfilling years in the St. Albans area teaching various classes. Now I am down to a weekly class in Sandy, Bedfordshire.

I feel at home with yoga. It never fails to nurture me physically, mentally and spiritually.

Johanna Singh

YUJ IT Informatics