I have started to realise the fact that being able to express myself through writing is something which is very tiring and stressful for me.
The more I plan on using writing as a medium of communication and expression, the tougher I realise it is.

Lately, there have been intense moments in my life, where I feel very purposeless and unproductive.
The density of my thoughts are so high that I find it very difficult to channelize these thoughts which are then followed by intense emotions which do nothing to calm an already stressed mind. I finally plucked up the tenacity to jot down something.

I have slowly come to terms

With the fact that Lupus and a normal life don’t make sense and more importantly that it doesn’t have to make sense.
I have always believed that adverse situations are simply golden opportunities to carve out an extraordinary life out of.
But normal was a lie.
I had to redefine normal.

Some of the biggest fears of being diagnosed with a chronic illness are of loneliness and isolation. Strangely this fear starts to creep out only after many months of accepting the diagnosis and trying to live with it.

This feeling of isolation can be from any variety of triggers.

Ranging from missing out on a school picnic or dropping a year or more from school/college or the lack of a job, the lack of a spouse or partner, the ever burgeoning cost of medical care, the question of having a child, post pregnancy complications and the list goes on. This uncertainty can increase the fear factor in your life.
These are also points that make you contemplate or think deeper about life.
Things that make you pause and wonder about all the things that you have taken for granted so far. Contemplating about the regular life path that has been defined by the society for you.

How does one accept and most importantly cope with such uncertainty?

So the question is, in a state where your body and mind are not on the same page, What should one do?

Your mind is functioning very well even though your body might not be. How do I make the best out of it?
Then you realise this is a question that is not limited to someone with a chronic illness or any illness for that matter. This is a question that is applicable to every person who has and will exist on this earthly plane.
Even a star athlete would be thinking and actively intending on breaking his latest record.
The athlete would be willing his or her body to be on par with his or hers mind’s vision.
The key here is to make actionable targets and goals and most importantly to stick to it while giving yourself ample allowances for any disease related setbacks..
My father loves using the phrase “The only way to beat it is to be at it!”
So true yet not so simple to achieve.

I have given thought to things like Self hypnosis and dream analysis and spirituality in my quest to attain answers for my aching mind and body.
While you do this you will notice a lot of thoughts in the back of your mind like ambition, job, social security, financial security. Again coming full circle to the line of destabilizing thoughts.
The question is how and where does one strike a balance?

The point is that when you are at a stage where you are physically very tired and incapable of doing anything, you feel mentally fatigued.
To have your mind working at a level of intellect that results in productive thoughts becomes even more difficult due to the physical fatigue.
It becomes very difficult to be able stick to that fine line.

How do I manage to maintain a certain level of sanity?
I was on the brim of losing my sanity and I thought it would be fun to share a couple of things that I actively try to make a routine in order to maintain my sanity.
1. Indulge in intellectual and grounded conversations with people.
2. Try learning Yoga -Pranayama, Asanas. Meditation, self-Hypnosis
3. Learn to breathe consciously
Awareness of one’s breathing…. As you inhale and exhale…. Be aware of the air coming in and going out.. The warmth as you exhale..the cool air as you inhale… completely shutting other thoughts. Having the belief that nothing else is as important than this right now in my life. That I need this for my peace of mind. This is what my body needs.. My organs.. My mind… for wellness and healing. I need this. That conviction is all it takes.. And to reach that conviction one might have to do this for a certain period of time until the realisation strikes deeper. The key word here being consistency.

4. Remember the tough and disabling times and compare it to your present situation (or vice versa) – Trust me, gratitude shall overflow.
5. Chant – Repeatedly saying the same words, especially when faith is attached to it, can have a transcendental effect and immensely heal.
6. Read in bits and pieces if you can
7. RANT -!! Keep writing what you feel and what you did etc…including your thoughts and perspectives
A lot of these times, you will notice that you lack the focus to be able to sit at a stretch and execute any or one of these tasks.
At other times, you will feel at your most natural and be able to do the tasks seamlessly.
The secret is in being able to identify which among these help you regain your focus.
It could be yoga or it could be chanting. In my case, these are the two that help me immensely. The key is to be able to identify that one activity that triggers you to regain your focus and thus engage yourself in a more productive and satisfying manner eventually leading to a sense of calmness and well-being.
Remember, Be at it!!


PS – MUSIC is an instant mood booster for me!

11 thoughts on “Living with Lupus – Embracing the Uncertainty”

  1. Vachas, your expressions are truest and any empathetic person can relate to the uneasy state of your body and consequently mind..
    As you have rightly concluded, conflicts , disappointments are not like some VIP visitors exclusively for you 😀.
    Take a day at a time and indulge in it. I too agree, Chanting , pranayama help to focus and preserve energy and maintaining reasonable energy levels is helped through conscious breathing.
    Strength of body is vital to mental strength. At any cost feed body on time. Also Water your body enough 😌.

    Diverting the mind though seems a typical advice , is the best way to keep the mind in control. Mind can be kept calm by keeping it engaged in anything other than Thinking 😛
    Body not behaving the way mind wants to, is distressing for a versatile girl like you. Only the body is ill. The soul within you is intact ,indestructible.. Meditate on thar ever-glowing soul imagining it as flame of a lamp. That will energise you.

    Keep writing. Don’t be after solutions for everything.. solutions will evolve on their own.
    I believe in my faith and my prayers will uphold you always.

    Love you mol.

  2. Surge of deepest fears unveiled. I feel that needs lot of strength…Vachas, you are not mundane material…..you have a long away to go and do something extraordinary. Fears need to be conquered…mind to be controlled and channelised….all this is just a passing phase….I can see you giving talks and achieving all that you desire.

  3. That li’l glimpse into your mind was beautiful, Vachas! You’re an extraordinary person and will achieve extraordinary things, trust me! I know nothing will stop you!

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  5. Very good attemp Vachas.
    You may Keep on thinking as long
    as you can.
    The, once generated will certainly influence the whole existence.
    You have gone a step further, by spreading your thoughts enabling others also to think.
    Good wishes.
    To see me you may look at mirror.

  6. Thank you a lot for sharing this with all people you really understand
    what you’re speaking about! Bookmarked. Please also discuss
    with my web site =). We will have a hyperlink change contract between us

  7. Written well and in a very relatable manner. You are touching more lives than you might be thinking or knowing. Proud of you as always.

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