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Submitted by PatientsEngage on 1 January 2018
Stock pic of a person in meditation in silhouette depicting mantra

In the journey of chronic conditions, there are often many lows and it is important to find the mantra that helps us through those difficult times. Here we share the lived experience of our contributors that motivate us. 

Gargi Ahluwalia - On her journey with Parkinson's

I felt a complete change in myself. I am now alert and happy. I told myself 'Gargi, Get up! You have to do your work yourself'. I do all my banking work myself and am also able to drive.

I believe that perseverance, determination and discipline have made me what I am today.

I have put an alarm for all the different timings for my medicine. I have been quite a disciplined person, and that quality has always helped me

Christine Lee - On taking control of diabetes and her life 

I wake up around 6 am to cook my breakfast of oats, instead of eating out, and also prepare my lunch for the day to take to work.

I learnt to read labels when shopping for groceries.

I drive less often and take the MRT and/or buses to work, thereby increasing my walking time. I walk to the Church, to the Wet Market, Supermarket, etc.

During family functions, I become the unofficial photographer, baby-sitter, cleaner, etc. These activities keep me away from the buffet table successfully…

Dr. Prof Nandi - How to recharge while being the sole caregiver to his wife with Alzheimer's 

Strange as it may sound, I love signing in to Facebook and chatting up with my Facebook friends, who are mostly my students. That is definitely a big release and a fun area for me. I used to listen to music before, but don’t do it much now as my gramophones etc don’t work any more.

Kavitha Krishnamoorthy - on handling migraine through lifestyle changes

It took me one year to get the diet changes in place. The second year was about getting an exercise regime in place. And now in the third year, I am working at keeping the mind calm and stress free. Stress seems to be the one thing that can set the body off in a tizzy again!.

Shivaji Lande on Dealing with Anxiety during Treatment of Oesophagus Cancer

In between chemotherapy, work from home was allowed to me. Whatever work was possible I did sitting from home. That was positive for me and helped me fight my anxiety, at least temporarily. Also, sleepless night turned into peaceful small naps. I got mental satisfaction and felt confident to go through this painful process.

Lakshmi Menon on coping with the progressive challenges of Rheumatoid Arthritis 

It is up to us to be aware and alert, to learn more and understand our illness so we can cope better. We need to be active as long as we can. With age the disease will progress and things will only get worse; so we need to be more prepared to deal with newer challenges. We need to arrange for better social and financial support to overcome this debilitating disease.

Shrikant Shah on getting his life back after a bypass surgery and valve replacement 

Having going through the difficult phase myself, my advice to other patients facing similar challenges is that-

  • Do not let the operation scare you. Medical science has advanced to a great extent and risks have reduced considerably.
  • Ensure you take all steps to remain healthy to prevent a similar episode from recurring
  • Staying positive is the prime requisite to overcome this disease. 

Cara Chew, Singapore on recovering from the effects of chemotherapy 

Exercise and going back to studies helped stimulate my mind and body in a big way..

  • I just finished a course on web development learning how to programme both front-end and back-end development to add onto my 10-years of marketing experience, which ended up being harder than I thought. But learning something new, especially something so practical and focussed, truly helped with my chemo brain.
  • Taichi is my choice of complementary therapy as I have read some articles from the Harvard Medical journals on the health benefits of Taichi. After doing Taichi for 11 months, my leg muscles have grown back their strength and I no longer involuntarily trip on myself. I can even climb higher flights of stairs without feeling breathless as compared to some of my non-active friends. The hardening of veins in my left arm from the first chemotherapy cycle has significantly reduced. When I just ended chemotherapy, both my palms were of a greyish colour. Now, they are back to being pink.

R.B Krishnan on use of counselling to accept his child's autism and to regain clarity on roles 

We had to deal with our emotional attachment as father and son or mother and son on one hand and a teacher- pupil role on the other. Sometimes both the roles got mixed up and confusion prevailed. It took some counselling and introspection to get some clarity. But each time this happened, our son was the one who was most affected.

Javed Ameer on 3 most important tips for rehabilitation for a cerebral stroke patient 

  1. Be ‘physical’. Cycle, walk, jog, run, exercise………
  2. Accept your fate and state. Mentally. Faster you do it, better for your peace of mind!
  3. Reading can take you places (my choice has been travelogues), music and meditation help but remember you are there absolutely alone. Don’t even expect anything from anyone. Each one of us have our own battles. Get up and go. As I said ‘be physical’.

Swati Agrawal on the learning process of coping with fibromyalgia

I would like to tell all fibromyalgia warriors to not lose hope. If your doctors have not been able to help, you can still learn to manage your symptoms and live a productive life. You will have to try a variety of treatments, and lifestyle changes to figure out what works best for you. When you are diagnosed, it is very scary as we have been doomed to suffer with an incurable illness without much guidance. But with time, we learn to manage it better through treatments, proper rest and sleep, good diet, regular exercise and other similar changes. I also hope that others will try to understand and empathise with this fight. Let’s hope for more awareness and a treatment for fibromyalgia.

Neha Uttam on the experience of living independently with autism

I follow a written timetable from the time I wake up in morning till I sleep at night. Independent living is an amazing experience according to me. Anyone who hasn’t experienced it, should go for Independent living. Being independent is a fabulous and marvellous and amazing experience.

Deepa Soman shares tips for caregivers of stroke patients

Recognize that the patient will have their mood swings – anger, frustration, sadness. Give them psychological air. Let them know you understand without judgment. Let the moment, incident, situation pass. Allow them their dark days. We all have them.