IT'S YOUR LIFE -- A PRACTICAL HANDBOOK FOR CHRONIC AILMENTS

( By Sangeeta S. Bhagwat )

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Your Pivotal Role

Remember that the choice of treatment, doctor and health care unit, is ultimately yours to make.

However, it is equally important for you to understand, that with choice, will come responsibility.

You, yourself must be the one who shoulders the responsibility of maximizing your well being.

If you regularly demonstrate negligence and carelessness with your own care, you cannot expect either your family or health care workers to offer you their best of patience and support.

Also understand, that if you ignore all the warnings, you are tempting fate. Too many factors are involved in fending off the worst, especially in a critical situation. You may not get enough time to reach assistance, your doctor and the hospital. The correct diagnosis must be made. The right life-saving equipment and drugs should be prescribed, be available and be in working order. The list goes on. It is in your interest, to do all that you possibly can, to avoid such scenarios.

You should be open to ideas, practices and therapies, which can significantly enhance well being. Your positive thinking, discipline and diet, as also alternative support systems such as meditation, yoga, reiki, reflexology, massage, etc. can all help.

Some factors to note:

Take inventory of your life



  • Take complete inventory of your life. It has been estimated that a possible 85 % of chronic ailments, such as acidity, cancer, diabetes, heart disease, hypertension, etc. are due to unhealthy lifestyles.

    If you are fortunate enough to have had an early diagnosis, correcting your choices could prove decisive. We usually avoid making radical changes in our life. The common excuse is " I have no choice". If you were to reframe your situation in the context of life versus death, you would be surprised at how many solutions become more acceptable.

    Would you prefer to live, that too more healthily, for another few years, or rather be the CEO? Try asking your spouse if they would prefer another X amount in the bank, or you living for an extra 5 years. Ask your parents if they would rather you outlive them, or have you fulfill all their ambitions. Ask someone who lost a parent early, whether they would have preferred their parent to live another few years, or have had their substantial inheritance. This may seem a little dramatic, but only when you think in such extreme terms, do hard decisions become easier to make.

    If you find that your job is too stressful, or your house location unhealthy, the commuting too tiring or your lifestyle too hard to maintain, change it. Change the job, quit the habit, eat bland food, change houses, and even the city, if necessary.

    Make radical changes, but choose health. The rest will follow.

    Consider yourself lucky, to have been given the time and opportunity to make changes. Many face their sudden end in accidents, terrorist attacks, calamities, etc., without any second chances.


Be an informed patient



  • Medical errors happen when something that was planned as a part of medical care doesn't work out, or when the wrong plan was used in the first place. As an example of how real the threat is, consider this - according to an Institute of Health report, a few years ago, about 98,000 people die in US hospitals each year, as a result of medical errors. Most errors result from the complex health care system, miscommunication or ignorance. An informed patient minimizes these risks for himself.


  • First and foremost, learn as much as you can, about your disease/condition. Ask all the questions you need to, visit all the web sites you must, read all the books you can, talk to other patients.


  • Adequate knowledge about your condition helps maximize beneficial inputs and avoid aggravations. This optimizes well being, on the physical level.


  • Carefully choose informed, appropriate sources. Do not rely on hearsay/uninformed guesses. You could be putting yourself in a life-threatening situation.


  • Try to keep abreast of latest developments in your disease treatment. This should include any adverse reports/cautions about existing treatment. Discuss any viable treatment options that you come across, with your doctor. Any doubts about your treatment or medication, should also be checked with your doctor.


  • Do not be afraid to question your doctors/other medical staff. Unfortunately, many people treat them like "Gods who are not to be questioned". It is your life. If you suspect negligence or error, keeping quiet will increase your anxiety and may further compromise your health. Most dedicated staff and doctors are more than willing, to calm and reassure you. If they are at fault, they will immediately apologize and correct the situation. If they are offended, rude or refuse to offer explanation or correction, you should be reconsidering your choice of doctor or facility.


  • For even the most dedicated and earnest doctors and staff, you are one of many. There is a limit to the attention and time that they can give you, as there are so many more, demanding the same attention. So it is your duty, to be as alert, informed and aware as possible.

Stay in the Present




  • Feeling sorry or regretting the events/habits/"luck" that have brought you to this point, will serve no purpose. Avoid post-mortem of your past habits and behavior. This will only cause further depression, resentment, anger and helplessness. All these are exhausting for the mind and body.


  • Deal with the present. There is scope for change now, not to the past.


  • Imagining the worst to come, endless days of tiring, painful treatment, whether you face a quick demise, further progress of the disease and it's consequences, effect on the people around you... all these are draining and useless thoughts.


  • Take it one day at a time. Focusing on the present moment makes the whole situation far more manageable. It also makes you feel less hopeless.


  • Most things become more bearable, if perceived to be of limited duration.

Be optimistic




  • Do not allow the statistics to depress you. Most studies are made on diseased people. Hence, not enough is known about those who have had apparently healthy lives, despite dramatically "abnormal" test results.


  • Each person is an individual. No amount of data or averages can predict with 100% accuracy, how you or your body will progress. So keep upbeat and optimistic. At the very least, your reduced stress levels will benefit your body.

Also Be Practical




  • One of the prime worries faced by any individual, healthy or otherwise, is the concern for their dependents or surviving family. While they will eventually have to find their own ways to cope, you can certainly ensure that you minimize the difficult realities that they will have to deal with. Once you have dealt with this required house-keeping, most likely you will feel a little less stressed, for having done whatever is in your hands, for your loved ones. This frees you to focus on improving your health.


  • Make sure that you have made all possible efforts to put your affairs in order. Execute a proper will, do the necessary paperwork, make all your intentions/wishes as clear as possible. This way, you can lessen the possibility of your loved ones having to face the ordeal of disputes, squabbles, delays in receiving their inheritance, insecurity, shortage of funds, etc.. .


  • As harsh as it may be, you have to consider the possible situations that may arise in the course of your disease taking a downturn. Clearly indicate your wishes regarding the extent of life-support treatment that you should be given. Better still, execute a proper witnessed statement to this effect, expressing your desires or intent regarding limits to the type, extent, duration and cost of treatment that you should be subjected to. Absolve your family and doctors of this extremely difficult decision making process. This will also ensure that your wishes are honored, even if you are unable to communicate at that critical juncture.


  • If you wish to pledge your eyes, or donate any other body parts, or your body itself, register yourself or convey this information to your primary care-giver.

Be focused




  • There is only one way to be in perfect health. There are infinite ways to be in disharmony/illness. Worrying about all the things that can/may go wrong is an exhausting, useless and never-ending activity. Instead, focus on reliving perfection.


  • Identify and conquer your fears. Fear brings on more episodes and problems, than anything else. Strengthen your resolve with affirmations, self-confidence and determination. If you succumb to every fear that haunts you, you may become a helpless prisoner. Focus on the determination to be well.

Diagnostic Tests




  • No test is 100% accurate. Tests can be sensitive or specific. A very sensitive test is unlikely to miss an existing disease. However, it may falsely indicate disease, in a healthy person. On the other hand, a very specific test is unlikely to indicate disease in a healthy person. But it may miss disease in someone unhealthy. Keep this in mind, when you look at your test results.


  • Choose your testing facilities with the same care as your health care unit. Ensure that it has a reputation for maximum accuracy and consistency.


  • Due to technical reasons, in many cases, it is possible to get significantly different results, from different laboratories. To minimize the resultant confusion and misinterpretation, it is advisable to do all your periodic tests at the same facility. This allows for a more meaningful comparison and better understanding of trend.

Medication and Treatment




  • Make sure your prescription is legible and you have understood how to use it. An unfortunately large number of medical errors occur due to misunderstanding the name and dose of the prescription.


  • Do not change/skip prescribed medication/treatment, without informing your doctor. Allopathic medicines can have dramatic adverse effects, if taken incorrectly. For instance, blood pressure medicines often need to be tapered off in a prescribed fashion. Skipping a dose may lead to sudden, dangerous rise in blood pressure.


  • Regularly review your medication and therapy with the doctor. Drugs and treatment often require dosage to be adjusted or substitutes introduced.


  • Possible adverse drug reactions are usually listed in the printed material provided with the medication. They are also available on numerous sites. Make it a point to look up the medication you are on and keep an eye out for any such symptoms. Maintaining a log of uncommon symptoms/discomfort, may be useful for this.


  • Be frank, factual, concise and accurate when you report to your doctor. He requires reliable, relevant and factual feedback from you. This way, he too, can make well-informed decisions.


  • Informed patients quickly earn their doctor's respect and are more likely to receive minimal medication, tests and therapies. A complaining, undisciplined patient invites more of these, as the doctor is less likely to expect compliance from the patient. Often the patient himself prefers to have more tablets/injections prescribed, instead of imposing simple disciplinary lifestyle measures on himself.


  • Follow the diet restrictions and prescribed exercises diligently. Ingesting yourself with restricted food, fluids, smoke or toxins will only result in your own discomfort. It can be risky, expensive and result in further medication and treatment, which could have otherwise been avoided.


  • Inform your doctor about any alternative remedies that you are considering. Especially any food or medicines that you intend to have orally. Allopathic treatment and medication often have complicated adverse effects, when combined with certain food or drink. Alternatives may contain minerals or substances, which may be harmful for your specific condition. It is safer to inform your doctor.

Diet and Nutrition




  • Almost all chronic ailments now have specific diets. Consult a nutrition expert and get to understand yours completely. Understand why certain foods should be avoided, what is their physiological impact and what substitutes can be had instead.


  • Make sure you know which foods contain items you are supposed to avoid. For instance, when advised a low salt diet, it is not sufficient to simply cut the table salt in your diet. You also need to restrict items containing monosodium glutamate and baking soda. Many preserved foods, pickles, sauces and even jams, contain high sodium. You could get your daily intake analyzed by the dietitian, who can suggest suitable changes.


  • Regulating your diet can alone increase your well being dramatically. It can also help in reducing medication and treatment. Most patients are careless in this area, either because they underestimate it's benefits, or find the prescribed diet unpalatable.


  • Take the trouble to find recipes, which use allowed substitutes. There is so much variety in this world, that despite numerous restrictions, given the effort and commitment, you will surely find food to your liking. This will bring you enjoyment and a greater sense of "normalcy".


  • Try and find at least one restaurant, where you can have appropriate preparations made for yourself. This will enable you to eat out with family/friends, again enhancing the feeling of "normalcy" and well being. Such small details give huge psychological boosts.


  • Regularly review your diet with your nutrition expert. It may routinely require adjustment. As the diet usually imposes restrictions for certain foods and a high proportion of others, this can, over a period, lead to imbalances. For instance, whilst a high calcium diet may have initially been recommended, there may come a point, when there is calcium overload. Such changes can themselves lead to fresh symptoms.

Be prepared for Emergencies




  • Keep the emergency service numbers readily available, along with your own doctors'.


  • Unfortunately, emergency services are not the same standard, world over. Hence, if you have a driver in the house, it would be a good idea to ensure that the car always has gas in it.


  • Keeping a blood pressure measuring device handy can prove useful. Blood pressure is a very important vital sign, which must be monitored carefully. Check blood pressure at the first indication of discomfort. Convey this reading to the health worker you call.


  • Many serious ailments have medicines prescribed for emergency situations. For example, inhaler pumps for asthmatics, sub-lingual pills for angina or sudden high blood pressure. If you have been prescribed such emergency measures, ensure that you always have it handy. Keep one each, at home, in the car, at office, in your wallet/pill box, etc.. This can save precious minutes and hence your life.


  • Oxygen is an invaluable life-saver, in many emergency situations. Consider keeping one of those small, portable tanks handy. They are usually easily available in most drug stores.


  • If your disease results in frequent runs to the Emergency room, keep a "kit" ready. This should have your medical papers- including last E.C.G., blood & other reports, current medication & treatment, listed allergies if any, emergency medication, change of clothes, wallet, keys, phone, etc.. Also include any other items that may be specifically required for your condition, such as nebulizers, oxygen cannula or tourniquets.

Keep this kit with you, even when you travel.




  • Do not panic. This is easier said then done. But, find out what works best, in calming you. Examples range from simply trying to draw deep, steadying breaths, chanting your favorite mantra/prayer, clutching your cross/amulet/beads or even your loved one's hands. The important thing is to avoid all the consequences of panic. These include hyperventilation, elevated pulse and blood pressure, release of stress hormones, etc.. All these only aggravate the episode and make it worse for you. Also encourage your caregiver to practice being calm in such situations. Their panic could cause confusion, inefficiency, and loss of time, plus further stress to you.


  • Do not be embarrassed to ask for help or draw attention to yourself. If you are feeling uneasy, do not overstrain yourself or take unnecessary risks, just to avoid "public humiliation". Your life and well being is in your hands. Ask for help immediately.

Avoid unnecessary risks




  • Even mild injuries or infections can trigger major complications. As immunity and overall health are already compromised, such events can result in grave consequences. Simple precautions would make life easier. One must not live in constant fear. Yet, it would be prudent to avoid rash activities, eating unhygienic foods or exposing yourself to other aggravations.


  • Do not put yourself in any discomfort, because you are too embarrassed to tell someone else, that you are being put in some kind of risk. For instance, if you have a respiratory disorder, request a smoker to leave the room, if you can't move yourself.


  • Use common sense, keeping your specific condition in mind.

Examples:




  • If you have a heart disease or hypertension, avoid climbing stairs or rushing around.


  • If you have diabetes, be careful around knives, tools or other sharp objects. Use good quality footwear.


  • If you have any respiratory disorders, avoid passive smoke, dust or other such allergens.


  • If you have osteoporosis, be careful on wet surfaces. Keep anti skid mats wherever required. Do not lift very heavy items. Use staircase railings and a walking aid, if required.


  • For renal failure patients, catheters or fistulas are critical to the dialysis treatment. Ensure that these are always adequately protected from any possible harm.

Accept support



  • Accept any financial, emotional or physical help offered by well-wishers. There is only so much that you can do by yourself. When the universe is bringing you help, accept it gracefully. Do not allow false pride to step in. For others, it is an opportunity to feel better about a situation that they otherwise feel helpless about.

Adopt a healthy lifestyle




  • Practice the common denominators of good health, advocated by holistic and allopathic practitioners alike. These include, in random order:


  • basic exercise like walking (beneficial in most diseases)


  • meditation


  • creative hobbies


  • networking with family and friends


  • music


  • relaxation


  • massage


  • hygiene (especially when eating out, or if you have allergies)


  • humor


  • positive thinking


  • abstinence from alcohol/smoking/recreational drugs/red meat.

Reinforce Inner Strength



  • Battling disease is as much a test of mental as physical strength. Work on increasing your faith and personal belief. Whether it is religion, spirituality, faith in God or simply self-confidence, any of these can prove to be the decisive factor in your recovery. There are any number of books, guides and doctrines for you to choose from.

Try safe alternative treatments




  • Choose your alternative therapy, keeping in mind the dictum "First, do no harm". Once this condition is met, try all possibilities. You are free to make every effort to improve your health and heal yourself. In fact, you must. Disregard the skeptics or those with critical opinions. The fact of the matter is, that with the intrinsic instinct for survival, almost every person would try any viable option. It is easier to be rigid in thinking, when you are not faced with chronic disease.


  • The possibility of serious side effects from allopathic drugs and intervention treatments is well acknowledged. You can use Reiki to channel to medication and apparatus, requesting only experiencing benefits from them. Similarly, the Sanathana Sai Sanjeevinis include a Neutralize symbol, which effectively nullify any negative effects of the medication/therapy. For a free download of the entire Sanjeevinis, visit www.Saisanjeevinis.org. You can purchase products depicting Sanjeevinis and other healing symbols, at www.SunstreamArts.com.


  • Even the greatest skeptic will see no harm in such cautious options. So you have a great deal to gain and nothing to lose, by trying it out for yourself.

Network with others




  • No one, other than someone who has had similar experience, can truly empathize with you. Even your caregiver will be able to relate better with another caregiver. Amazing relationships can develop between families of fellow patients. Common experience of serious disease events, may bond people together, more than years of acquaintance can. Join or start a support group.


  • Look out for the people around you as well. Being genuinely concerned and involved with others, will make you less self involved, less depressed and avoids self-pity.

If something works for you, suggest it to others.



  • Continue interaction with your family and friends as well. Sheer exhaustion makes a social life difficult. But don't neglect the people who matter to you. Remember to be patient with them.

    Fighting for your life can make other people's travails seem unimportant. However, that is the worst they have known. Avoid a condescending attitude and be understanding instead.

    It is very likely that they cannot even imagine what you deal with. Often, they simply do not want to. Because they cannot cope with the idea of their loved one enduring such difficulties.

    Understand and accept this. This imbalance in perception can make relationships tricky. It is upto you, to ensure that you nurture those that matter to you.

Pay attention to your care-giver




  • If you are fortunate enough to have a loving family or care-giver, be thoughtful to them as well. They are often stressed, overworked, exhausted and depressed themselves. Try to see that they receive adequate rest and take care of themselves too.


  • They need both mental and physical strength, to take care of the added responsibilities. You may be the one experiencing physical and mental trauma, but recognize that they too, consequently, face their own ordeals.


  • Supporting each other, will give you the strength and courage to return to your natural state of complete health and well being.
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