Skip to main content
Submitted by Heal with Ishita on 30 January 2020

Ishita Biswas has Lupus (SLE) and Macrophage Activation Syndrome (MAS) and shares with us how she deals with the challenges of each day to the best of her abilities.

#DayInTheLife Series

Mornings : My mornings begin with meditation. I try to wake up as early as possible, but I try to make sure that my body is not stressed by that. I am up mostly by 6:30 am. I feel starting your day with meditation is the best way to have a productive day, irrespective of the fact whether you have a chronic condition or not. Meditation nourishes your mind as food nourishes your body. I have hypothyroidism so I take my medications on empty stomach. 

Then, if my body feels alright, I do exercise. With lupus, you always tend to have a chronic lethargy and body pain. Sometimes the bones ache bitterly and joints swell up as well. After I went through my heart failure, I was not allowed to walk even. I was on bed rest for months. Now I am more stable. Exercising is a must, but one must make sure that heart rate is absolutely normal and there is no bone pain or dizziness before starting to exercise. Pain is almost a given in such chronic conditions, but you should not let pain get the better of you. As for me, I like to continue with my work till such time that the pain is unbearable or I require hospitalization or I have been advised rest by the doctor.

Related Reading: Ishita was diagnosed with Lupus at 13

According to me, we should not let our ailments control our lives. Having said that, we should not push ourselves unreasonably. There will be days when you will not be able to get out of bed because of critical health issues which others may fail to fathom. In times like this we have to take proper rest instead of panicking or complaining about our situations. I am grateful for the days I remain in absolute good health and thus I get things done before scheduled time. I might sometimes over work too because you never know when you start feeling unwell. Doctors have advised yoga and light exercises for me as well as walking so that the body remains fit instead of creating extra pain due to an intensive work out. Good health should be our motto when it comes to exercise.

After my workout, I eat my breakfast which is any recipe of oats every single day accompanied by a cup of green tea. Then I take all my morning medications with time gaps in between. Staying hydrated is really important, so I make sure I drink enough water through out the day.

Before the major relapse of lupus and heart failure, I used to go to college regularly. I used to take the public transport travelling almost 2 hours at a stretch. I always carried my lunch and avoided food from canteen unless it was an emergency. Eating fruits during hunger cravings is a good option. My mornings were spent in classes and library. After recovering from the relapse, now I spend my mornings studying, creating content for my youtube channel, teaching students and doing other freelancing work. I go to college for my practical classes and that too by a cab, since travelling daily is still not allowed for me. Moreover in lupus (SLE) you should avoid overly crowded places as it is important to take the precaution of not getting infected.

Afternoons : I have my lunch in the afternoon, which is the heaviest meal of the day. My diet is lupus nephritis friendly and also promotes heart health. I am on a low carbohydrate diet for weight management since I was on high dosage of steroids for years and also on chemotherapy. I take 2 chapatis (Indian Wraps) made out of oats flour, lots of vegetables, low protein, low fat, low oil, low sugar and tons of salads. I eat everything in limited quantity in a balanced way as suggested by my doctors. My diet keeps changing according to my medical reports. If I am at home I like reading good books in the afternoon or take up any hobby I am passionate about, at least for an hour. I feel it helps me reconnect with my real self and increases my sense of creativity. It’s also a stress buster for me. If I am in college I do the same thing where ever I find a peaceful corner if classes are not going on. Friends also help in lifting my spirit. Sometimes I engage in deep conversation with a friend or counsel people undergoing traumatic conditions in life via my pages on social media. Afternoons are the best part of my day, it is my leisure time. 2 hours in the afternoon is always kept for the stuff which might seem silly to many but it keeps me happy. Not everyday is the same. There are days when I drift off to sleep with my books without realizing that its almost evening.

Evenings : Even if I stay home or go to college, I come back home and teach my students. My evening snacks are salads, a handful of puffed rice, roasted chickpeas and green tea. My evenings are spent in teaching and learning something new from the kids everyday.

Nights : I have my dinner by 8:30 pm. My dinner is any recipe made of oats and salad. Most of the days it is the same as lunch. It promotes better digestion. After that I take all my medications for the night time one after the other with a little time gap in between. After my students are gone, I take a little rest and watch videos, listen to podcasts or read books which I like. Reading is the biggest task of the day which I enjoy doing. I complete everything by 10:30 pm and do some journaling. I sleep by 11pm.

All the household chores including cooking is still done by my mother and I am really grateful to her. She takes care of my diet and everything I need. My routine may change in future depending on my career and health. As of now this is how my days are spent when I am healthy. There have been days when I have been bed-ridden for months with needles piercing me, when I have undergone violent treatment procedures and have suffered immense pain. Although the condition of lupus and macrophage activation syndrome (MAS) is incurable, I am grateful for the fact that I am healing now.

Finding out the right managing protocol of lupus should be the aim of every lupus patient. You have to find out what works best for you and learn how to live with the disease. Everyday is a new day, a new beginning.

We should never draw a conclusion based on the bad days of our lives. We are not our trauma, our past does not define our future. We should live every moment and enjoy little things in life because life is precious.

Condition