Prachee Bhosle, 42, who was diagnosed with ankylosing spondylitis and fibromyalgia, two painful rheumatic disorders, shelved her career plans and chose to become a patient leader to raise awareness and advocate for better care and support. She is currently President of Ankylosing Spondylitis Welfare Society.
Please tell us a little bit about yourself, your background?
I am a parent to 2 kids, a 14-year-old girl and a 10-year-old boy. Both my kids are homeschooled by me since 2017. After completing my Masters in Social Psychology and a Post Graduate Diploma in Counselling Psychology, I had planned to work as school counsellor once both kids were in Primary school. But life had other plans.
What were your early symptoms?
My health complications started after the birth of my first child although I can’t be very sure. During the delivery my tailbone got fractured making it difficult for me to sit and do regular chores. However, as a new mother I didn’t have much choice and took it in my stride. Gradually, I felt stiffness creeping in. I would get extremely fatigued, even simple trips to the grocery store would exhaust me. I thought every new mother faces similar problems and ignored my symptoms.
Three years later, I delivered my second child. After that my fatigue and pain grew immensely. I would start my day popping a painkiller daily, at times 2 or 3 a day. I realized something wasn’t right and visited an orthopaedic. After some x-rays and tests he said there is nothing serious and I need to take some medications and start physiotherapy. Subsequently, I also tried Yoga and Ayurvedic medicines but nothing really helped.
Gradually, my fatigue became completely unmanageable. I was unable to get out of bed due to extreme morning stiffness. I could not take my kids down to the park as it seemed like a difficult task. I had planned to start counselling in schools. However, I could barely manage my home or my needs efficiently. Soon, I started getting low grade fever nearly every day. With any exertion the fever would shoot up to 101.5 or so. My husband and I realized this is not okay. We changed a couple of doctors but were not getting results and my health kept deteriorating. Fatigue and stiffness kept getting worse. I would find it difficult to get out of bed due to stiffness and would have to drop down to the floor and crawl to the toilet. During periods, it was scarier. My kids were small and I was not able to care well for them. They were scared that I may die and would cling to me and cry.
How were you diagnosed with ankylosing spondylitis?
In my search for a diagnosis, I visited several doctors and even got tested for cancer due to the low grade fever. Various tests prescribed reports came back normal. Some doctors told me it’s all in my head and I am just stressed about nothing. And if I decide to ignore all this, I would be fine. Unfortunately, no doctor recommended me to a psychologist or psychiatrist but held me responsible for my state. Honestly, by that time I too had started blaming myself for my illness and started believing all is in my head. I didn’t know how I would manage to come out of all this as the fatigue and pain all seemed real to me physically.
When finally I consulted a rheumatologist, she asked me the right questions. It was the first time that I ever felt understood by a doctor. I started crying as she was stating my symptoms exactly. She then checked the first X-Ray that I had taken years ago and said its evident that I have
Ankylosing spondylitis, or AS, is a type of arthritis in your spine that leads to severe inflammation and pain and spreads to other parts of the body. A follow-up MRI scan of the spine confirmed my disease to be AS. It was such a relief to actually assign a name to my symptoms and realise that it was not all in my head after all.
What medicines were you prescribed?
I was immediately put on Saaz tablets, an anti-inflammatory along with NSAIDS (nonsteroidal anti-inflammatory drugs). I was also given some medicines for the muscle spasms in my lower back.
Was there any improvement after you started on medications for AS?
I had to change my rheumatologist, as we had to relocate to Pune. The new doctor increased my Saaz dosage and changed my NSAID. This really helped me handle and manage my pain better. Gradually fatigue was slightly less. I was able to get up without much stiffness and could at least get about doing my daily chores comfortably.
How was your fibromyalgia detected?
I was doing well with my AS meds and fatigue was less but still wasn’t gone. I was good with day-to-day work but nothing extra. Also, the NSAIDS managed most pains but not the other tender points. I was getting a lot of spasms which would get suppressed with meds but resurface again. My sleep cycle was disturbed and I would get regular severe migraines. I visited my rheumatologist again and he believed that I also had fibromyalgia. I wasn’t quite sure as I was unable to distinguish between the AS and fibromyalgia aches and pains. However, with the new meds I could see a difference in my fatigue positively. My fibro was reduced. Today, I am in the best shape I have been in years.
Any related complications or co-morbidities that you would like to share? And how do you manage them?
After I was diagnosed with AS I learnt that AS may affect other organs as well. However, since I was on meds I didn’t take it that seriously, believing that my AS is well in control. But along the way I had some scary health setbacks – Once I had a severe pounding choking sensation in the chest for which I had to rush to went to A&E and they said my BP and pulse were extremely high. I then saw a cardiologist who after some tests, put me on relevant medicines. I had to find a cardiologist who understood my AS and Fibro as well. Another time I developed acute dry cough that kept me up through the night.
Soon, I developed a lot of dry cough and feared I had TB. I would be up all night coughing. A Pulmonologist diagnosed the condition as hyper-reactive airways and started me on an inhaler, in another instance I had to consult an ophthalmologist as my eyes would feel very dry and at times develop a boil in it, I was given artificial tears and drops to manage my symptoms. Also, I had to change a med after I was diagnosed with tachycardia (heart rhythm disorder).
I understood that both my illnesses, AS and fibro, require a multi-disciplinary approach. I now visit all my doctors regularly and ensure that I keep my rheumatologist informed about my health and medicines.
What have been some of the side effects of the medications that you have to manage?
I think the first and foremost side effect is weight gain. Given the pain and fatigue, it not easy to manage the weight loss as well. Luckily, I haven’t had any serious side effects.
How did your condition alter your life plans?
Work: I did not opt to become a school counsellor due to my illness. However, I now chose to become a patient leader and put my education in psychology to good use. It may be a voluntary job but very satisfying. Also, my illness made my husband and I more resolute in the decision of homeschooling our kids. So now being their teacher is also my job.
Marriage and family relationships: My illness brought my husband and I closer. He has seen my struggles and has been through my entire journey as my pillar of support. He has been very supportive of my active work in Ankylosing Spondylitis Welfare Society (ASWS).
Children: - My condition affected my children the most. They were always scared of losing me. They would sit beside me and cry, “Do not die.” They saw me in my worst situation when they needed me the most. They have become more responsible and mature due to my illnessAt times it hurts to see them this way. However, they have grown up beautifully and with compassion beyond their age.
How have your conditions affected your quality of life?
Definitely, the condition has affected my quality of life considerably., Even if my symptoms and illnesses are well managed, the chronic nature of the illness brings in brain fog, a different kind of tiredness, apart from fatigue, that makes social interactions difficult. I don’t like holding casual conversations with people anymore as I now consider it a waste of energy. I don’t involve myself in social activities easily as I know I will have to pay a price later. Even with family I choose when to go out with them and when to stay back. . I don’t prefer to travel long distances and have become selective about family vacations. A key change is now I have decided to prioritise my wishes and needs
Wrt, family and relations, I have honestly cut off with those who don’t understand my struggle. Even talking to people is a big investment for me and I really choose who is really worth it. I no more maintain relations just for the sake of it. I have pets replace this social vacuum.
What is your fitness and relaxation routine?
I don’t actively follow a fitness and relaxation routine. I have loads of house work which I do along with my family’s support. Also, taking my pets for walks, doing some stretches, gardening is my fitness routine. For relaxation, I prefer just lying down in between in the day for say half an hour, or read something up. I love to have a nice hot cup of coffee at night and some me-time.
What is the most challenging time of day?
My most challenging time of the day is morning. I wake up feeling all zombied. I need time to process the day and usually am very quiet and withdrawn during tea time. I need around an hour or so to get my energy levels up and focus on the day ahead.
What activities are most difficult?
For me the most difficult activities are those involving sitting or squatting down, even for brief periods. Also, cooking a big meal is very difficult for me as it not only involves physical efforts but also mental planning which tires me out. Hence I usually keep things very simple. Also, getting dressed for an outing or anything is very difficult for me. It tires me out completely before the event.
How are support groups helpful?
Even if you have a supportive family they don’t truly understand what you are going through. The loss of self-image, the grieving on the loss of your previous self, the physical and mental limitations, the frustrations etc. In such a situation support groups make you feel accepted. They help you address the “Why me?” You start belonging to a group who can support you - be it in relations to emotions, medications, job, or family life. You can vent without feeling judged. Many a times, families find it difficult to understand this illness because it is invisible. Support groups can make families understand that the struggles of their loved ones is real. They can provide the support even to families by connecting them with other families or discussing about their concerns.
Complete the sentence
My motto in life: To make the most of good days and rest out the bad ones.
I was inspired by: Myself and my desire to achieve the new balance in my life soon.
Covid – a boon or bane: Bane - due to the fatal casualties and long lasting symptoms it has caused. Boon - because it’s made people realise the value of what’s truly important and brought families face-to-face with each other literally.
The most annoying moment: When I was finding it difficult to walk after sitting for some time, an old Uncle started lecturing me about how unfit and fat I am and I should take him as a role model as he is fit even though old.
The best thing someone said: When even the doctors said it’s all in my head and I was about to give up finding answers, my husband said this is our fight and we will not rest till you feel better. “I don’t care what all doctors say I know you are not faking it.” That was empowering.
I love: My kids and my pets who make this all bearable and comfortable for me.
I hate: Unsolicited advices without actual physical or emotional support.
I fear: I may die due to involvement of the heart and not be there for my family when they need me the most.
My biggest support: My husband, kids and pets. The way my pets guard me when I am down is pure love.
The best gift I got: My pet dog Munchkin as my birthday gift. My husband was reluctant to have another pet. However, he agreed for her adoption as my birthday gift.
I wish: I am able to manage my illness like I currently am and things don’t spiral out of hand.
