3 years of entering my life and 2 years of documented togetherness :) My lupus journey is one I felt should be penned , for me to remind myself of my life altering experience , if not for anything else!
Just like the beginning of any relationship which is clouded by uncertainty anxiety and disagreements, we began ours too. I denied its existence in my life, i pushed it away, i cried when my pleas fell on deaf ears but gradually it became a part of me and my journey. One that i wouldn't have chosen if i had a choice but how often do we get to make that choice ?
My life was difficult , troubles seemed to never end ! When i thought i had to fight only my skin issues, my eyes refused to open in light . As i figured my way around light, my knees began to fail me. When I attended to my knees, fatigue made sure i never got out of bed. When i looked in the mirror, i hardly recognized the person i saw there. My eyes were tired, my body seemed to be a burden for my legs, my hands just dropping as if with no purpose, my face red and warm like an infectious big boil. Even in the midst of all this, if some work came by on a day when i can be out of bed, I put on my bright lipstick and stepped out as if untouched by anything unpleasant in life , very well knowing it would take few days to recover from this one day of activity.
My life was difficult , troubles seemed to never end ! When i thought i had to fight only my skin issues, my eyes refused to open in light . As i figured my way around light, my knees began to fail me. When I attended to my knees, fatigue made sure i never got out of bed. When i looked in the mirror, i hardly recognized the person i saw there. My eyes were tired, my body seemed to be a burden for my legs, my hands just dropping as if with no purpose, my face red and warm like an infectious big boil. Even in the midst of all this, if some work came by on a day when i can be out of bed, I put on my bright lipstick and stepped out as if untouched by anything unpleasant in life , very well knowing it would take few days to recover from this one day of activity.
Life became a series of unattended events, lost out work, slipped away opportunities, distanced friendships, called off plans, unanswered phone calls and probably rusted relationships too.
So, the initial year of battle with no knowledge of who i was up against was the most difficult one . It was not easy to explain what i was going through when doctors gave me temporary relief and my dilemma seemed to not end. I am sure many thought i was cooking up excuses to avoid what i dislike. It was far from the truth! There are days when i choked on the most repeated words to my family.. " I AM NOT WELL, I DON'T KNOW HOW TO EXPLAIN, I AM SHUT DOWN. PLEASE DONT FORCE ME TO ATTEND THIS EVENT".
When doctor told me I have Lupus , i didn't really know the intensity of the term but nevertheless i was happy i was not imagining my issues and it really did have a name. Once the diagnosis was confirmed Lupus, a relief flashed through me along with the awareness that this could have been much worse and I have been lucky that my organs are still intact ! SO what exactly is Lupus or Systemic Lupus Erythmetosis? In simple words, this is a condition which develops when the body's immunity, supposed to protect the body from external attack mistakes own body to be an outsider and attacks the body. Since its a systemic issue, it can just attack any part or organ of the body. In my case, my skin , my joints, musculoskeletal areas were affected . I also have other conditions associated with lupus which is Fibromyalgia where your muscles ache so much all the time that you feel you have just come from a war zone fighting with your arms and legs, Sjogrens where your eyes and throat dry up so much that even in the middle of the night you wake up with parched lips and throat, Raynauds where the blood vessels contract stopping the blood flow especially in cold weather. Sorry to scare you all with all these terms together but these were all happening together for me at one point in time. By the way a big shout out to those whose organs have been affected by Lupus and are still living like a boss...u know who you are..... exemplary spirit! The organ most commonly affected is Kidney. If you remember Selena Gomez recently having a kidney transplant, it is part of her Lupus treatment. Then lungs and heart are also at a risk of being affected. So we all have our annual regular check ups to ensure all ees well in our little Kingdom .
With so much happening inside me, the external pace of my life had changed completely. I was never a part of the rat race to begin with. I always had my own pace which mostly did not match with that of the world but when i was out there i made sure i belonged to the space i was in .
With the onset of Lupus, I actually saw the world pass by me. I observed peoples energy with envy. Every morning I watched the large crowd waiting for the morning bus and some even running to hop into the bus just leaving the stop. I wished i was one of them running with that kind of zest towards life. They for sure find nothing special in their mundane but for someone who find tossing and turning in bed difficult with extreme fatigue and pain, it was a dream . That's when you realise the preciousness of normalcy !Lupus made me APPRECIATE.
You know as humans, when we can no longer do something or when life puts a pause on us, we think of all that we were and all that we could do . We may not quite believe that we once did all of that with that level of vigour and passion.
Lupus was also that soulmate who came in to my life to throw light on those areas which needed my care and attention. Not all soulmates are meant to be pleasant i hear ! I longed for a normal day, looked forward to waking up with no aches and pain, walking without limping, being able to stretch fingers without difficulty, being able to open my eyes into the brightness of a beautiful morning; when even a boring day without having to worry about how your body is feeling is no more a boring day but a blessed one . It helped me save my precious energy for what is worth. I was someone who couldn't say NO to anything that was asked of me and i tried my best to be everywhere helping and providing my service in whichever way i can. This was actually draining me a lot and what had not dawned on me was the fact that a lot of people were thriving on my energy leaving me exhausted. Those energy Vampires ! I learnt to distance myself from them. Lupus taught me to say NO!
Medicines galore ! At some point i wondered if my issues are from the illness or from the n number of medicines consumed .The fact of the matter was it was both !!! Blood tests after blood tests , organ tests and what not! The only effort i took to step out of the house was to see a doctor. Holidays were no more holidays, just a whole lot of checks ups and scans and tiring hospital visits. I am not sure if anyone really understood my plight. I was always active on social media because that probably was the only place where i could be active without any physical exertion. So no one quite believed when i kept repeating i am unwell.
Added complications when i had to undergo surgeries. Lupus made healing difficult. A dental surgery which literally took the life out of me . Hats off to my doctors who kept working on me till i felt better. It took weeks and weeks to heal . Dealing with so much pain made me want to remove all my teeth and smile through artificial ones! Spare me the pain please.....
Next came the difficult healing after an endometrial cyst surgery which took a month n half to heal . All thanks to Lupus, i had the thread sticking out of my incision due to the stitch opening up from delayed healing ! Lupus asked me to REST and a little more of REST.
So why am i writing all these down? Reason number 2 ; For those who feel low about their own life and compare it to those that you see on social media, please do remember that everyone is dealing with their own battles. Some are lucky to not have any issues but the rest of us have to be lucky to let the issues not affect us. Even as i write this i have discomfort with lack of sleep since about 3 days . With skin irritations aggravating at night, i am awake trying to calm it down . My vocal chord is quite compromised, so i no longer sing which is something i try not to think of ! Singing was my healing balm .... anyway that's that....Lupus gently told me to LET GO....
We need to accept our life in all its forms. If this is the learning curve, we are meant to learn. Slow down, instead of cursing our fate and being negative about it , let us see how best we can use this time to do something which we wouldn't have done otherwise. May be we have been slowed down to notice something we haven't hitherto paid attention to. Feel low, feel sad, feel hurt but also rise as soon as you can . You are your best friend, you are your trusted love, you are the one who wants you to be at your best , so spend time with You and find joy in the small things. Do not expect everyone to understand or appreciate or encourage. That's ok. Their journey is different.
To all the warriors out there dealing with their battles like a boss....Kudos ! I have improved a lot with regards to health and i am glad i can do all that i do now :) With gratitude to those who understood, stood by me, felt my pain, held my hand, my Lupus journey continues ....
This picture was taken at Poonthottam Ayurvedic resort when I had to discontinue my treatment due to intense abdominal pain the previous 5 days which could not be contained even in Brufen . So here, i am being taken to hospital for further investigation . Days before my surgery. Couldn't even walk without pausing every few seconds. But never too sick for a selfie right ? So keep smiling :)
