When I was first diagnosed with my chronic illness in 2012, I put together a plan to deal with my condition. It constituted a measure that had an important impact in the process. This 5-point plan would come to change and evolve over the years. Working through the set goals made me feel somewhat in control and gave me more and more confidence with time.
A. Collaborate with the care team -
Dealing with chronic illness involves developing a sound relationship with your care team. We never know when we would be in the right hands but on many occasions we are fortunate enough to find the best match. In any case, building trust and commitment with your team throughout engagement and involvement is necessary.
Through working with the care team, one can develop ways to best optimize their care and to advocate for necessary changes and timely actions should there be any. Lastly, as time goes by, much appreciation and gratitude for each other’s contributions are found.
Some of the notes I made to myself were the following:
B. Seek and take advantage of calm moments -
Prayers, meditation, and much introspection have help develop the right mind-set and work on my attitude and perceptions. For instance, I found that I needed to change my attitude from 'fighting' to 'embracing' my condition. I understood that my journey would be long, probably lasting for the rest of my life (whether for a day, few months or multiple years), and that thus I'd rather go along this road as a happy person who smiles at the end.
C. Simplify -
Finding out about a potentially deadly heart condition at a young age is one of the most humbling experiences, and to some extent, to put it frankly – it causes mental fudge.
In one short moment, I would come to be reminded that time on earth may be shorter than one originally imagines. Death is certainly inescapable, but the imminence of it is even higher for people living with a similar condition to the one that I have. Yet, at the same time, no one knows when it will occur. Many are diagnosed, others are not so fortunate. For those who are correctly diagnosed, anything is possible really - one can suddenly deteriorate and succumb one day or one can live a fairly good life for a very long time.
At one point, the patient has to make decisions on how to proceed amidst the condition and circumstances. One would objectively:
D. Diet & nutrition -
For a heart patient, healthy living is crucial. Diet and activity levels directly affect the body and the mind.
Personally, I have always been aware of my health and particularly what I eat and what I drink. For instance, I strive to limit my sugar intake to the point that despite my very sweet tooth, I would rarely drink juice or soft drinks. However, I have still struggled with my guilty pleasure - chocolate. Despite this, I have made a lot of good progress.
In addition, with the diagnosis, I learnt that I had to limit salt and adopt healthier habits with regards to diet and nutrition. For that purpose, I approached a dietician for advice via health services provided at work. The registered dietitian's advice came in two parts: living with cardiomyopathy, and dealing with (chronic) fatigue.
With regards to living with cardiomyopathy:
- Limit the amount of salt you add to food to 1 teaspoon per day.
- Taste your food before adding more salt.
- Be creative and use herbs and spices to flavour your foods.
- Limit foods that are high in hidden salt. These foods include some spices, processed meats, cheese, snacks, breakfast cereals, takeaways and fast food, ready-prepared and frozen meals, sandwich spreads, stock: cubes and powder, tinned, cured and smoked meats and fish, packet and tinned soups, sauces and gravy, canned vegetables... and some sauces and condiments.
With the fatigue:
The constant fatigue that I feel is one of the symptoms of cardiomyopathy as the weakened heart struggles to pump blood (and oxygen) around the body, making me feel like I have no energy. Below were the advice from the dietician:
E. Remain active -
Staying physically active and gradually building strength were very important to me. I figured being active would help me in many ways - body (metabolism, blood circulation...) and mind (dealing with stress, focus, spirit, and the thinking process...).
Of course, even with the best of plans, there would be good days and bad ones. On the days nothing works or when I am simply not able to go on - I wouldn't mope, I would simply try again the next day and keep on improving.
Feel free to comment of ask any questions.
Thanks for reading. Appreciated.
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