I vaguely remember my childhood and I remember the episode of breathlessness, coughing, getting tired, waking up early and lot of stomach upset. And in my school years, I remember few girls not sharing lunch with me as they wold think they might get infected if they did. And yes, I was not growing like my other siblings. Lots of complexities. Lots of questions in my head. WHY? WHY IS IT WTH ME? WHATS THE PROBLEM?
And then it was much later in my early twenties, I was diagnosed with Cystic Fibrosis. Until then I was given meds for Asthma, Sinusitis, Bronchiectasis, Pneumonia, Tuberculosis etc etc. I remember when I was put on anti allergens and steroids for the first time for asthma, I was in high school and I would hide my hands under the desk so that no one could see my shaking hands (Which was steroids side effects). I’ve experienced the pain and frustration from early childhood, the triumph and trials of different medicines and visiting different doctors, as well as the joy of managing it naturally. I am not an expert of Cystic Fibrosis and this information is not intended to treat or diagnose this condition which is rare and is mostly found in children. I am simply sharing my experiences and what has and has not worked for me over the years. My hope is that every person who goes through this medical condition feels hope and knows he/she is not alone.
I know you must be wanting to know, what Is Cystic Fibrosis?
Its the first question people ask me when they get to know I have this medical condition. Cystic Fibrosis is not as well known in India, in comparison to other “well known” illnesses such as Cancer, Diabetes etc, and is relatively rare occurrence, the fact is that very very few people live up to old age.
Its a hereditary disorder affecting the exocrine glands. It causes the production of abnormally thick mucus, leading to the blockage of the pancreatic ducts, intestines, and bronchi and often resulting in respiratory infections.
So yes, I did have sinusitis, Asthma, Bronchitis but that was because of cystic Fibrosis and because of lack of awareness in India, doctors could not diagnose the real cause of cough, breathlessness, excess mucus, pneumonia etc.
Visually, by just looking at me, you’ll never guess I’ve been suffering from it for years!. I am 28 years, decently good looking girl. Though you may say I am little under weight but then you might also think that I have been dieting because I want to look slimmer.
In all these years, my respiratory tract, pancreatic duct and intestines have been already attacked by this rare occurrence.
Next question would be, what causes Cystic Fibrosis?
A defect in the CFTR gene (One of the genes present in us) causes cystic fibrosis (CF). This gene makes a protein that controls the movement of salt and water in and out of your body’s cells. In people who have CF, the gene makes a protein that doesn’t work well. This causes thick, sticky mucus and very salty sweat.
Also don’t think If I have CF in my family, my other siblings will also have it. No. The defective gene is not compulsory that it will be passed on in all the siblings.
What are the Signs and symptoms?
Since its a progressive condition and not many of us who suffer from this disease live upto my age in our country; One because of the lack of medical facilities and Two, because of its awareness.
The signs and symptoms of cystic fibrosis (CF) vary from person to person and over time. Sometimes you’ll have few symptoms. Other times, your symptoms may become more severe.
- One of the first signs of CF that parents may notice is that their baby’s skin tastes salty when kissed, or the baby doesn’t pass stool when first born.
- Sleep disturbances because of not being able to breathe normally or oxygen deficiency.
- Most of the other signs and symptoms of CF happen later. They’re related to how CF affects the respiratory, digestive, or reproductive systems of the body.
“I always had salty skin. Though I would not sweat much but this taste always would remain on my body when I was a child and still does. Also I had this craving for salt since I was a child and my mum would keep scolding me for having excess salt. But back then I didn’t know why did I eat so much of salt. When I read and researched more about CF, I understood body demands more the things It needs. Like people who feel more thirsty is because they have lack of water in their body. So, the deficiency of salt would make me crave for it and I ate loads of salt all the time. I still do.”
Living with it:
I was diagnosed when I was 20 after I was told my lungs have been damaged because of the constant lung infections at a very reputed hospital in Delhi and will have to go for lung transplantation. Lack of awareness in India sometimes makes me go crazy about our health system but then we have come a long way since. But thanks to this awesome pulmonologist in Gurgaon, someone referred me to and he asked me to get a sweat test done.
Getting sweat test done was in itself a struggle. Because All India Medical Institute of Science (AIIMS), New Delhi, was the only hospital where this test was conducted and getting it done from there took me a week and lots of recommendations and finally it took the nurse to burn my skin twice as she was out of practice (understandable, not many people of my age would go and get sweat test done and for kids there were other ways to find it) but when the test results came, it came positive and they could not believe it so they conducted the test again. It was again positive.
Everyone was shocked in that room and didn’t utter a word to me. May be because they thought I might die soon and they felt bad about it.
When I was told what condition I have and reading and researching about it, made me conscious for few months. And Yes I did go into depression thinking that my career, my life is over. Oh I forgot to tell you that I was back then a “ BUDDING JOURNALIST” and I loved my job. I was crazy about it. I had ran away from my home to work in a well known news channel. And now after I was told I had CF, I could see, all of it going and not much before all of this, love of life, my boyfriend has also dumped me because he thought I was not giving him time. That crazy I was for my job. AND NOW I WAS IN DEPRESSION.
All I did was wake up, cry my heart out for half hour and take my medicines, eat a lot and sleep. For four months I did nothing other than these apart from the hospital visits.
The doctors didn’t expect me to live beyond 27, and I was 21. When one is supposedly so close to a terminal date, one should feel weak or depressed or despondent or pessimistic, or more likely, ALL of them together. The fact is, I felt all of these!
Given to my health condition, I have seen the insides of hospitals far more than I should have at this young age, mainly because of the frequent visits to treat my infections every now and then. I have watched and learned so much from these visits that I can now self-administer my injections, drugs, nebulisation because its tiring to go to hospital or clinics every now and then.
But then one morning I woke up and decided not let this rare occurrence, this ailment run my life and I took steps to come out of my depression and lead a better life.
I decided that even if I have lesser number of years to live compared to others, and if God has chosen some other path for me, that’s also fine. I plan to live and give hope to others that It just a health condition and we should NEVER let ourselves get affected. I went for various spiritual courses across the country, went for various Ayurvedic, homeopathic and many other treatments so that at least i could breath and walk, I could do something so that I am not dependent on others for my needs.
And after two years I chose a career which not only helped me heal myself but I also helps others. I took courses in physical and mental fitness and became a Wellness coach. My clients are few but they are the people who trust my abilities and sometimes when I am too exhausted or in too much pain to take a class, they understand perfectly. It is this bond that I have with my clients and, yes, friends, that keeps me going. My clients range in age from a young 13 to a distinguished 68. Even simply spending time in their presence is an energy-booster and I somehow feel more energetic after a session with them! When I am able to help someone to come out of their pain, sadness or grief. I feel grateful to Almighty for giving me this opportunity of helping them. I not only take fitness classes for people who have special medical conditions but I in fact conduct motivational workshops, posture and alignment workshops etc etc.
These all abilities came from my illness because I could understand the value of right posture, body alignment, motivation in life and counselling to come out of our special phases.
Have I lost hope of leading normal life?
No. I live my each day with a big Thank you to Almighty. I do my best to live a very normal life. I go out with my friends, have a drink, travel, work, make love and everything else that everyone does in their lifetime! but if you climb stairs, I would prefer escalator or lift. If you run, I walk. If you sleep for 8 hours, I sleep for 12hours instead. I have made adjustments. I have understood my condition and made friends with it. I try not to irritate it but yes there are days, when it really is on its peak and makes me suffer but then, on those days, my only husband ???? says, count your blessings and not cry about the bad days.
I cant stay awake till late, I cant eat street food which is the speciality of North India, I cannot walk on roads much as our dear country is always under construction, I need to take care of the changing weathers, stay away from people who got cold and cough, cannot eat ice creams or anything cold and yes, my fiends always make faces for that but I know they understand it.
SO YEAH… These are few of the compromises I do everyday. But I don’t loose hope.
Having people around you all fit and fine or even if they have something, its not like mine does make you feel little frustrated at times but then most of the times, I feel I am “the blessed one” because I believe GOD doesn’t give everything to everyone of us. He chooses and gives us some conditions because he believes in us and knows we can handle it much more gracefully than others and will not curse him for it. So, I know I am courageous and I can fight it.
But, behind all this is an effort to help others identify and be prepared to fight this. There may be no cure, but that doesn’t mean we should just surrender and sit in one corner waiting for the end!. Because of scarring from infection, a sufferer will either slowly suffocate – leaving their lungs unable to supply enough oxygen to the body – or their immune system loses the battle against infections , not able to digest food, may have to visit the washroom more than others, get tired, can’t run. . And yes, its dreadful at times that you can’t talk, breathe. Your heartbeat goes up rapidly just because of the effort of simply trying to breathe! But i try to tell those parents whose kids suffer from CF, please do not give up. It might be difficult but not impossible.
My daily routine starts with a regime of exercises, physiotherapy, Yoga and my unavoidable many many medicines. I also have to take care that my surroundings are clean. My spiritual and physical path has helped me a lot but then I am no saint. I have my ups and downs too as mentioned above; I have very bad days where I completely lose control.
This infection more often than not, causes immense pain in my chest and either side of my spine. And some of its side effects are not that obvious. For example, If I leave my hair wet, I suffer from bad headaches while on the other hand, if I tie up my hair for more than an hour, I again suffer from headaches. I can’t wear tight clothes and so on and on.
In the course of my life and work , I found grooming and make-up a useful way to cope with the illness but now I feel I don’t need it, because I find it is easier to accept yourself the way you are rather than hiding it behind make up. My friends have also stopped asking me if I have lost weight, because yes, we do lose weight in this disease continuously as we have less capability of enzyme secretions which helps in digestion of required nutrients and minerals.
We need to choose career more cautiously than others because abandoning my media career was the hardest decision I’ve made, but there was very little choice in the matter, and then I had to learn all new things for earning my livelihood, and at the age of 25, I was personal fitness trainer to those who needed medical fitness trainer which is not easily available in our country because when I needed one I could not find any.
This illness also helped me value true and rock-solid relationships. My early relationship was with my school friend, so I never had to explain that I have any illness because anyway he would see me coughing and going breathless every now and then. However, later on, I was asked out on dates by men who didn’t know me so well and that meant I had to choose the right moment to meet them, to mention my illness until I met my Faraz who accepted me the way I was and he was very cool about it. He knew we might not have children ever or he might have to spend most f his days with me in hospital. Be he did accept me.
Cystic fibrosis is part of my life with me day and night but the right treatment may just about hold it at bay. Techniques have developed rapidly in the past two decades. Medication is more tailored to the individual; physiotherapy is more sophisticated and intensive. In the morning I take two medications through a nebuliser, which produces a fine spray that I inhale. I then try to cough up any mucus that has built up overnight. I take almost dozen pills three times a day, many of them antibiotics, starting at breakfast. In more serious bouts of illness, I take intravenous antibiotics through a permanent tube in my hand.
As I mentioned life is not easy for everyone. Some may have chronic diabetes and have to take precautions and some like me may have Cystic fibrosis but all I want to say is, Get up and fight it. You have been chosen for something big and your job doesn’t end here. Now that you have learned something about it, your new task is to talk about it. It is NOT the end of your life unless YOU decide it. And it NEVER is!!
Be hopeful. Stay encouraged. Take control. Be patient and graceful with yourself and your body.
CF is a journey may be a smaller one but yes, for sure a tougher one. It will challenge you, teach you and guide you. It will stretch you and mould you.It can make you a better person if you just let it.
Take the advice and recommendations that work for you, and leave the others. This is your path and yours alone.
You are in control. You always have been.
https://livewithcf.com/2016/08/19/years-with-cystic-fibrosis/
