Adjusting To A Chronic Disorder

Back in 1999, an autoimmune disorder brought my life to a grinding halt… like a car in full throttle brought to a screeching halt. It hit me like a ton of bricks. For a while there, it was touch and go. With any autoimmune disorder, the diagnose is almost as complex as the disease itself.  After months of pain, illness, treatment and turmoil, the only glimmer was there was finally a name for it – ‘Lupus’ – they said. A word as foreign to me as any in Greek or Latin.

Systemic Lupus Erythematosus – an inflammatory disease where the immune system attacks its own tissues! I had never heard of this term nor knew how intensely bizarre, impetuous and ill-behaved this disorder would prove. Often wondering why it chose me, ravaging my body and often my fervour for life. Stress, Genes, Hereditary, Fate, Karma… we question it all. In the end, we just get on with it and learn to move on. It took two years of intermittent hospital stays, doctor’s visits and various treatments to finally attain some semblance of what ordinary folk call, living. Then on, it’s been a journey of sorts. When your body, stamina and will decide to make an enemy of your daily existence, the road proves rough indeed.

For anyone combating an autoimmune disorder, a lifestyle disease or a debilitating condition, it’s easy to slip into a dark place. Dealing with such a condition that requires all your energy and time, often leaves you sapped and exhausted most of the day – an extraordinary challenge. While you’re in that dark hole, trying your utmost to trudge along, the world doesn’t cease to spin. Your family and friends sympathise – but can they really understand? The door to your old life slams shut and you’re left standing alone. It’s amazing how you can be normal one minute and fall sick, the next. Constant pain and depression may become your new normal. Coping with it can be eased if you are lucky to have the right support and care. But not everyone does. The options are simple – you either sink or swim.

We know that for every family with a diabetic or someone on dialysis, the initial days are about processing and dealing with the situation… piecing together all the advice and guidance offered by well wishers and others who have gone through a similar experience trying to work out strategies that may best suit your purpose and lifestyle. Here, it’s important to remember that no treatment, diet or regiment works on the one-suits-all principle. You need to tailor make routines and schedules best suited to your needs.

You need to learn to listen to your body. It will clearly instruct you as to what is doable and what is not. You may need twelve hours of sleep instead of the usual eight; a 200 meter brisk-walk may seem a herculean task! Your medication may differ, your dosage may need tweaking from time to time, your energy could dip in the morning, and sleep patterns could get disturbed. The disease may seem to take control of your life and hijack your happiness; leave you frustrated and angry regularly. No guilt pangs now for spending days being a veritable couch potato. Pushing your body or your limits could cause more damage than good.

With any chronic diseases, your health and your body are a little more delicate than most. You have got to learn to be a little more cautious and deliberate in how you choose to treat them both. With that in mind look for things you can do rather than worry about the stuff you can’t. You have a label now – ‘Fragile! Handle with care!’ Friends and family, people who care will understand. You have got to learn to be a little more cautious and make simple lifestyle changes that help… Tons of sleep, a light exercise routine one you can probably stick to without injuring yourself. A good nutritious diet helps, keep in mind that cheats and treats are ok too. You deserve all the joy in life.

Lifestyle changes that you may incorporate all in the spirit of improving your condition frankly speaking may have the potential to improve your quality of life but often, the small snippets of advice from people could inevitably prove annoying and boring, but sometimes, downright insulting! When you find it difficult and a chore to climb out of bed each morning, an hour of yoga at 7:00 am sounds nearly hysterical. So treat these as a kindly sermon. Better still, make a collection of these for your next publishing venture! You may just get rich!! After all, self-help manuals do collect decent royalties these days.

Examine your lifestyle compassionately and objectively, withholding any judgement. Ask yourself, “What little tweak or change could I try today that may improve things?” Is it a trip to Vegas or shortly even to the moon?  Most of all, inject humour into your life. Hope and Humour change more things in life that one can possibly imagine!

Veera Shroff Sanjana
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