So the very first question they ask is how’s your blog going and all you can say is “ well..!! Yeah .. good .. but you know you have written loads of stuff but havenot got enough confidence to post them thinking they might sound funny or stupid . But here I am waiting for my blood test in queue ( still 100 tickets behind ) long wait . So I hope I am able to write my very first blog today . I never imagined that I will be writing my very first blog on wheelchair in queue in hospital 😀 but I have to .
I think if one is lucky enough to be gifted by one the rarest thing on this planet, no matter how hard or painful that thing is – you embrace it happily & not make yourself look victim of it . I have been rare since 12 years now and had an amazingly wonderful life until two years back when I got wheelchair bound.Going from a fully abled working girl to a wheelchair bound girl , everyone looks at me with pity but they don’t know I am soon going to come back with 👊🏽. If there’s One thing that differently abled people don’t want – that is “ sympathy or pity” , That’s the only reason I hid this “ being Rare” thing from the world for 12 years , instead lived a life people were surprised at “ oh ! She enjoys a lot! She travel a lot..!! Well !! Darling if you know you got only few time left, you will do same”. I was given 6 months to live by Indian forties docs in 2007. That was the day I actually started living my life . Since then , I am content & satisfied with whatever I have in my life . I love every single bit of being alive . I live, love, laugh , spend quality time with friends & family (on video calls) . I am not from the kind who gives up easily whether it’s body , habits or relationships ..lol..!!
Life took U – turn when I got differently abled . I don’t like the word “ disabled” . Well , now I can do exact same things “ differently “ that’s the only difference . The most important thing was being ALONE this time . But being Alone doesn’t mean , one is lonely .Biggest Problem right now is that I can’t go back to India coz of my treatments here and my family can’t come & stay in UK coz of the visa restrictions . They can only stay for 180 days in a year time on tourist visa. So , darling , you gotta fight your battle yourself alone & that too in London ( where I never wanted to come in the first place ) . Pretty amazing !! Well .. Destiny !!
Living at kings college Hospital , knowing almost all the nurses, & Docs …discussing their V day plans, their families, their struggles, politics, back home stories, their love life, work life, nurses from around the world , porters who take me to my xrays, ultra sounds and other tests and other departments every other day . Knowing them all.. Doctors who are now friends who just visit me to see me from their respective departments. Blood tests people who come early morning to collect blood sample every morning..now know that she’s super hard to get blood from as her veins will collapse once pricked. They just know which veins they could use and almost all get bruised after first 7-10 days 🤣. Some just see me & give up . As they would love to have that PICC Line in me again .. (that long tube thing which is permanently installed for 6 months in patients body .. ) as I had since July 2018.. cleaners who discuss their weekend plans & hospital politics Food guys who knows my regulars .. discussing the bigger topics like Brexit.. and stuff .. 🤣 Physiotherapist who is my regular now. She teases me every time that whichever ward I go, she follows automatically.. ( her duty gets changed to whichever ward I go coincidentally) . You learn a lot from people from different origins , countries & their journeys inspire you a lot.. Inspiration all around .. from fellow patients who tells how they came to UK , their struggles , their life stories . We humans are basically all heroes in our own stories.Such inspiring people truly 🙏🏼
These all lovely people working as forces in NHS .. Couldn’t thank enough .. living amazing hospitality life only coz of these friendly beautiful angels around .. #blessed🙏 #been12yearsnow #polymyositisawareness #nevergiveup #goingtocomebackwitha👊🏽