Living with Rheumatoid Arthritis
“Sorry you’ve got arthritis and there’s nothing we can do. You have just got to learn to live with it”. These were the words the doctor told Puan Sri Samaladevi Navaratnam, when she consulted her on her swollen and painful fourth toe. She was in her 40s then. Now, at 79, she has weathered the condition for more than three decades and its share of ups and downs, seen the changes in the manner in which the disease is treated, how information on RA has been disseminated, and the type of support for RA patients have been made available in the country.
Says Puan Sri Samaladevi, “There were no warning signs. I just woke up one morning with a swollen, painful and red fourth toe. The doctor informed me that I had arthritis and prescribed some painkillers. I didn’t really react very much as I had no idea of what the ramifications were and what the future held. I just got on with life. I was a teacher, teaching English and History at secondary school level. As part of the job, I had to be on my feet a lot everyday, and in the beginning this was fine.”
Although the pain settled for a while, it re-appeared in her knee. Again, she was prescribed an ointment and painkillers, so her “RA management” continued in this manner with the pain settling only to resurface in other joints such as the elbow, wrist and shoulders.
The shoulder was especially painful, and at one point Puan Sri Samaladevi found it difficult even to lift her hands to comb her hair.
She explains, “It was around that time that I happened to meet Toh Puan Hajah Aisha Ong who is now the Patron of the Arthritis Foundation.
When she heard about my situation and struggles, she recommended me to a rheumatologist, Dr. Kiran Veerapan, who was working at University Hospital at that time.”
“The good doctor diagnosed me as having rheumatoid arthritis and prescribed me a combination of Non-steroidal Anti-Inflammatory Drugs (NSAIDs) as well as a steroid injection for my shoulder with some other painkillers. “She looked after me until 10 years ago, until the time she migrated to Canada after which another rheumatologist took over my case.”
Puan Sri Samaladevi also underwent two hip replacement operations. About 15 years ago, her right hip joint was affected, causing her unbearable pain when she moved. It was so bad that she couldn’t drive.
Even walking was difficult and she needed the aid of a walking stick. She consulted a physiotherapist, and also tried acupuncture, seeking alternative treatment but relief was temporary. Finally, she took her doctor’s advice and opted for surgery. In 2000, she had a bilateral total hip replacement on her right hip, that helped her a great deal. She experienced almost no pain and could walk so well that as soon as she developed pain in her left hip nine years later, she decided to opt for hip replacement in Feb 2010.
Says Puan Sri Samaladevi, “I really prepared for my surgery as I had physiotherapy even before the second operation and continued with it after, which I believe helped speed up my recovery.”
“I continued with the exercises recommended at home regularly too. I also consulted a podiatrist, who helped me with an appropriate fit of shoes with insoles for my feet as one of my legs was a little shorter than the other, resulting from a fall that caused a hair-line fracture of the pelvic bone. Post-surgery though, this problem balanced itself out.” So how long did she have to stay in hospital? How long did the recovery process take? After the first operation she stayed in hospital for a week; after the second operation, for five days, but it had to be followed up with regular physiotherapy and checkups for about two years after.
The encouraging news, though, is that for the last two years, she has been relatively pain free and off painkillers as she has not had any flare-ups. Nonetheless, she is still on medication and continues to have regular check-ups with the doctors.
Says Puan Sri Samaladevi, “the good news is that the disease has a tendency to burn out. I’ve had it for 30-odd years and I am hoping that it should have, by now, run its course”.
So why or how did she get it in the first place? Was it hereditary? She explains, “No one in my family had it. I used to be very active all along, participated in sports regularly in my younger days. It’s just something that even the doctors cannot explain.” So how did having arthritis affect her life? Says Puan Sri Samaladevi, “Fortunately, while I was teaching, it did not bother me as much. As such, I was able to perform my duties well. It was only when my hips were affected that I had to slow down a little, but by then I had retired.”
Although she had pain and stiffness in her joints when she woke up in the mornings, in the early days of her RA, all she had to do was to take a hot shower, which would partially ease the stiffness, so that she could then set off to school without further ado. Despite the pain in her knee, she could still walk, climb stairs and move about with relative ease at school.
After retirement, she continued with voluntary service in some children’s homes and shelters such as The Shelter Home, Ozanam House and the Women’s Aid Organisation among others.
Puan Sri Samaladevi says, “I also helped to look after my grandchildren. Over time, when it became difficult to drive, I had to give up voluntary service. These days, I give support over the phone by talking to people and helping them deal with their condition. But I must acknowledge here that throughout my condition, I have had great support and encouragement from my family; especially my husband and children.”
When her condition was first diagnosed, her doctor was very encouraging, and related to her that even the famous South African cardiac surgeon, Christiaan Barnard, though struggling with rheumatoid arthritis for many years, went on to become the first man to perform the world’s first human-to-human heart transplant, before finally giving up operating in 1983. This went a long way to reassuring her that all was certainly not lost.
What would she recommend to people living with the condition?
- Pray and have faith. Whatever your religion, prayer works wonders, so keep the faith that things will get better
- Stay positive at all times!
- Follow your doctor’s advice and take your medication faithfully
- Go for your regular blood tests and health checks
- Exercise regularly. On days that you are not feeling so good, even light exercise helps. It is important to keep moving as otherwise the joints get more stiff and more painful
- Reach out. Access the specialists, newer drugs, more information and support available so freely today via the internet, via associations like AFM and be informed about your condition. It makes all the difference.
- Be very informed and cautious before trying alternative medication. I did go to a Chinese doctor who asked me to avoid eating certain foods and gave me some tablets and the rest of it, but on the insistence of a friend, I got the tablets tested and found them to contain steroids. So I stopped them immediately
- As far as food is concerned, I just eat a regular diet. My doctor had advised me to stop foods only if I felt any adverse effects to it