When Severe RA Flare-ups Took Over Me 24X7

My baby was just, stepping into her threes and we were looking up preschools for her. I was under regular medicines for my RA Flare-ups, taking all the prescribed medications, but something had changed. There was a bad feeling which I felt in my bones. I was losing grip on myself, and my intuition told me that all was not well. Call it whatever, but somehow I did not feel comfortable consulting the rheumatologist, supposed to be the best in Assam. 

RA Flare-ups Took Over And I Hated My Rheumatologist

I was slowly beginning to understand inflammatory arthritis pain and was more accepting of the truth that it’s always there. What I could not accede to was the attitude of the doctor. He started me on methotrexate and painkillers without telling me why he was prescribing them. He never chose to inform me about RA and what I would be facing. The doctor never told me the link between the medicines, mood swings, depression and RA flare-ups. On mega RA flare-up days when I called him, he told me to double my dose.

I Tried To Be Brave

With constant RA flare-ups, a growing toddler, a busy husband and my pet dog, I had my hands full but was handicapped due to increasing flare-ups. Sometimes the pain was mild, sometimes not so much and sometimes crippling. Putting on a brave smile, I worked to deal with it as there was no other choice.

Scheduling My Days Around RA Flare-ups

I put my child in playschool as soon as she was three. It gave me free time in the first half of the day, and with help from my part-timer maid, I could finish the cooking and housework. My maid was there till my baby came home so it was easier to break her day when she was back. I could rest after lunch. We spent time with our pet dog and watched TV before taking a nap.

The RA flare-ups and Pain Attacks

On my good days when I had just baseline pain, and mild aches, I felt happy and almost my old self. But the aches would always come back to haunt all joints. The flare-ups affected my hands, feet, neck, hips, back, ribs, and jaws, and it was like a roller coaster taking me on a never-ending ride. The pain pulled me apart, and I tried to survive, thinking it would go away or get numb.

I Started Getting Mood Swings

It was hard to accept that the mega RA flare-ups were not going away anytime too soon. On my worst days, which seemed every day, it was hard to recognize myself. It was not easy to dress up, and I never felt like going out with my husband and child. I spent hours sitting alone, thinking of everything, nothing, past, future, lost jobs and who I was.

RA was changing my life upside down, and the medicines did not help. Sometimes, often I shouted at my baby, and then I repented. It was not her fault. I hated myself for hurting her feelings. But I thanked God, she was there. Even in my worst depressive state, she was the ray of hope that kept me sane.

Depression is Real, Especially for RA-Hit

I had always been an optimist and a mentally healthy person, but, RA took a toll, and I started to sink into depression during 2006- 2007. Thinking of my college and university days, when I was active, and illness-free became a way to while away lonely hours. I stopped meeting people or calling friends. Oil painting was my hobby, but when my fingers refused to bend, I stopped painting, sinking into darkness.

Pain ruled me

Pain, stiffness, and fatigue started ruling my life and took over my thought processes. One of the worst things to happen was my inability to cook meals. Cooking was my strong point, but I could not do it. Somehow, I would struggle and put something together. It was difficult to recognize myself, who was this thin, bony and depressed woman?

I Refused To Be a Passive Patient.

 Late in 2006 on one of my visits to the doctor, I confronted my consultant. In direct terms, I told him that his treatment was not making any positive impact and that I needed my life back on track even with RA on the pillion seat. The doctor dared to call me the most pessimist person. I refused to accept that and asked him to refer me for treatment outside the state. I could not be a passive patient anymore. It was the best decision I made, and it became the turning point for me.

2006 Turned Me Slowly Into a Vegetable

 It was October. I was trying to come to terms with the death of my father and managing my depressive state. Routine life was getting too difficult to manage. Nothing cheered me up anymore. Most of the time, I had a low-grade fever, stiffness, loss of appetite and insomnia. In between, I did have good days when the pain was not so bad or when I felt healthy almost. Soon it would be another year, and I hoped for better days.

A New year-2007 but RA Ruled Me. 

 In the month of May 2007, I called my mother to come and stay with me. May 27, 2007, I opened the door for her. Slowly I walked back to my bed and lay down. It would be a whole year in bed for me. It was not possible to get up from a sleeping position by myself for the years 2007 to 2008. My muscles, joints, and willpower weakened to an extreme level, thanks to frequent RA flare-ups that overlapped me completely.

Sick with Never Ending Pain

I felt pain in my wrists, ankles, toes, hips and my lower back. The worst ache was in my knees with my ribs squeezing my lungs so that I would gasp for breath. At times I felt that someone was crushing my chest. No position was comfortable. Nothing helped sitting or lying down, and no way of easing the pain in my ribs. I stopped wearing bras or dresses. It was comfortable to wear loose tee shirts or night dresses.

Most days, I could feel painful jaws excruciating earaches and constant headaches. It was getting difficult to open my mouth properly, to eat, to close it or to chew the food. My words seem slurred. I could not smile as it was painful.

I dreaded Mornings

Mornings were the worst for me. It was a marathon to get through the chores- brushing, washing up or even going to the loo. My toes would swell up, and my feet became leaden. It was painful to walk and not possible to walk straight. I was walking like a bear. Hopping, limping, dragging myself. When I could not do that, someone helped me to the loo.

Sometimes all joints flare up together. Shoulders become immovable, arms weigh down, and ribs crush. You cannot raise your arms or bend them. Sometimes hot oil massage helps and sometimes even the soft touch of my baby girl would hurt. My face felt hot, my legs, and calves felt burning hot, and the Fever seemed like devil’s fire. The RA flare-ups were a constant companion now.

I Turned into a Ragdoll With RA flare-ups

The progress into a limp ragdoll-like state was in leaps and bounds  due to the severity of RA flare-ups. It was not possible anymore to sit, lie down, prop up with pillows, change sides, lie sideways or use the loo by myself. Someone had to assist me with everything each moment. My mother, my husband and even my three-year-old girl did everything they could. Baba, my pet dog would sit hours near me sniffing or touching me with his paws. When no one looked, I  would bare my thoughts to him. He understood, that dogs always do.

Existing Only On Fluids for Two months

Since RA flare-ups weakened my muscles to such an extent that they could not pull up my bones, I had to lie down for 24 hours. It was not possible to move my head or my hand without assistance. The horror of RA flare-ups was physical for me and the strain enveloped each member of my family. Nothing went down my throat, it was not possible to swallow anything except drops of water. At times only juice of some seasonal fruits.

Losing Simple Joys

I lost taste, one day, I asked my mom to rub my tongue with bhoot Jolokia(the hottest chilli on earth). She did, but still no taste. As my RA flare-ups worsened, and my consultant doctor refused to come for a visit at home, I was taken to Dispur Hospitals which was the closest. However, my condition went from bad to worse each day.

What RA Flare-ups look like 

As a patient with rheumatoid arthritis facing severe flare-ups, my symptoms worsened. It was getting difficult to manage symptoms during a flare-up with prescribed medication or home remedies. Also, the flare-ups had a very significant impact on my emotional and mental health conditions.

 I Was Cranky at the Hospital

It was a terrible time to stay away from home even when the home was a couple of minutes away. The doctors at Dispur Hospitals were like family to us. My daughter was born there. We always went there for small ailments. I whined to be sent home and my Doctor, Dr Jayanta Bordoloi was very patient with me. I still remember his soft voice persuading me to eat a little.

I could not as RA flare-ups prevented me from swallowing. He kept me on fluids and under observation for a week. The team of doctors finally advised us to go for a check-up and further treatment outside Assam. Since my fever was too high, they prescribed paracetamol to bring it down. We had to cancel flight bookings thrice as my condition due to RA flare-ups was not good.

 We took the flight to New Delhi in July 2007

One night I saw my Husband sitting up and nervous. He was panicking because of my critical RA flare-ups and painful situation. That night I just asked him to book the tickets and place Baba our pet dog in a dog care centre. Somehow, I knew that everything depended on me. It was up to me to steer my life back on track. I told myself that RA flare-ups would not rule me anymore.

My Treatment At Apollo

In the last week of July 2007, my husband, my mother and our daughter packed some clothes and prepared to start the journey. Somehow, with the help of our maid and my mother, they dressed me in presentable clothes. My husband had selected the most comfortable clothes and an extra-large flip-flop for me. What an irony that I was taking a flight without sandals on my feet. They were swollen and stiff. 

Read the story of my treatment, recovery from RA Flare-ups with critical care treatment at Apollo Hospitals New Delhi and the long route to finding myself again in my next blog- Give Me Back My Life doctor