IT DIDN’T HAPPEN OVERNIGHT

Recently, a former engineering student of mine asked me ‘did you have this illness while you were teaching us?’. I replied ‘yes, it didn’t happen overnight’. I somehow managed to work and live life as normally as I could with this rarity.

When I was finishing my Masters in 2007, I met a lifelong ‘boyfriend’ of mine, as my friends like to call it. Polymyositis is a chronic condition that will never leave me. Rare diseases take an average of three to four years to be diagnosed, however in my case it took almost eight years.

I was very flexible and supple as a child. I was capable of bending my body very easily and could do highly difficult yoga poses, such as holding hands in the front and taking them over the head and to the back without breaking the hand bond.

I have loved sports since I was a child and I am passionate about dancing. One sunny afternoon in the summer holidays I was dancing in the lobby and got so carried away that I starting doing gymnastics and went into the splits. I heard a ‘crunch’ and realized my knee had come out. I felt pain like never before. My mum and dad rushed towards me after hearing my scream and dad pressed my kneecap back into place. I was able to stand and walk like nothing had happened. Friends and relatives came over in the evening to check on me and I was the one serving them tea and biscuits!

The next day, dad took me to an orthopedic doctor who said  I was fine and was just very flexible. I was told the joints in my body were very loose and my muscle tissues were exceedingly resilient which made my body highly flexible. He also told me to drink more milk and I would be fine! Now I think that instead of ignoring these symptoms, if we would have had some blood works done back then, it would have helped us in detecting this rarity more quickly than my body giving up gradually. We had no clue why it happened and what it was. Early diagnosis helps in so many ways.

WHAT IS POLYMYOSITIS?

Polymyositis is one of the inflammatory myopathies – a group of muscle diseases that involves inflammation of the muscles or associated tissues, such as the blood vessels that supply the muscles. A myopathy is a muscle disease and inflammation is response to cell damage. Polymyositis brings along with it: muscle pain and stiffness, muscle weakness, joint pain and stiffness, problems with swallowing and irregular heart rhythms if the heart muscle becomes inflamed. One autoimmune disease usually brings one or two of its friends along with it.

In 2007, I was told I only had only six months to a year to live, as they say the risk of cancer is the highest within the first year of diagnosis. My perspective towards everything changed that day. Until that day, all I did was study. From then on, not only did my perspective towards life change, but I had to completely change my lifestyle. Simple things like tying my hair and wearing cotton clothes and normal shoes would feel super heavy on my body.

I am truly blessed to have had a bunch of angels around me since 2007 providing a helpful network of support, including mentors, friends, family and colleagues. I am grateful to each and every one of you for being part of my roller coaster life.

I believe God gives tough roles to his best Actors. Living all alone in England and struggling each day, from managing my symptoms through chemotherapy to the unexpected flare ups and surgeries, makes me discover my new thresholds. Even if you are living with family, every single one of us has to fight our own battle on our own only because in this end you have to be your own hero! This Buddhist quote gives me great comfort: ‘No one saves us but ourselves. No one can and no one may. We must walk the path.’

coz at the end , Darling ! You have to be your own hero. Live, love, laugh and never give up.

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One morning she wakes up different

Every time I ask myself ( with every wonder that happen to me) , how much can this actually restrict me from living a normal life ? Well, if my heart says .. Nah..!! Not much .. you have seen much more worse than this..
THAT is quite a big assurance given by my heart to my Brain . Lol..!!
Then , 
Then sweetheart, I take that “wonder “ onboard and look forward to come out “Alive & satisfied “ from that in as much normal way as I can without panicking & offending people, who are just looking for some tinniest excuse to leave .. lol .. hasdey wasdey raho 🙏🏼
Some “wonders “ are so big that it takes years and years … and some are pretty short – which obviously – you got no idea about .. Some turns into shock from surprises..
In my last meeting with my consultant , I asked about the prognosis of this disease.. and the much expected answer he gave “ well !! Make short term plans . All I hear from “Rare People “ like you is that – we make short term plans . That short term can be a month / week or mostly a DAY. We plan to not tire out ourselves at the end of the day by overdoing things that we could once do easily .Just coz your brain tells you – ( yeah .. you can walk – twice this park or you can work full time 5 days or you can walk uphill or stand for that long , wash your hair, sit on low level seats or simply dance) doesn’t means you should . Weigh every little thing that your Brain tells you that you have done that before and you could do it now. Instead , You need to adapt to your “ New Be”.
My Newbe started in 2007. I have changed million stuff / things / lifestyle/way of thinking/ habits since 2007. I heard from lot of people ” prabh, you have changed a lot ” well .. yeah I had to sweetheart” . Whether it’s my hair length that I can’t raise my arms above my shoulders or my dressing sense – coz I can’t wear heavy ( which is normal for normal people ) clothes . Even single button on my dress sometimes feels so heavy or be it shoes.. I still remember a friend wanted me to buy a pair of beautiful North Face shoes ( they were on offer ) but I kept on convincing her that I cannot wear those coz of weak muscles. But she kept on arguing that – they are on offer. You won’t get good offers on this brand easily .. lol. Well darling , even if they were giving that for free, I wouldn’t buy those coz I simply cannot wear those – simply coz they were super heavy . I actually tried them to make her feel good and they actually felt like elephants in my shoes . Anyways , she bought those .. Lol..!! for someone else .. but the point is – I had to make changes according to my needs/ my body . I wear light weight clothes/silk nightsuits coz a normal cloth is heavy for my muscles . Lol..!! I still remember a teenage incident- a beautiful cousin of mine was meant to sleep next to me – while we were having all cousins sleepover at her sisters ( my other cousin) wedding . She was super annoyed by me in the morning . I asked her “ what happened? She replied-“ I couldn’t sleep whole night coz of you . I was like “ why ?” She said everytime you take turn (on bed) , you get up . Why can’t you simply turn yourself like we do. I had no answer to that . Coz that time my disease wasn’t even diagnosed. I kept on thinking about this concept for quite a days . I even tried turning myself on bed without getting up – number of times but failed miserably every-time. Then eventually gave up – thinking may b this is the way I am .. lol
Throughout my journey I have seen days , where I am not even able to eat chappati with my own hand coz I can’t tear out a bite ( size) from the chapati coz  simply my hand muscles are too weak. I wasn’t able to hold empty tea cup . I have spilled/broken things coz I couldn’t hold it . Coz in your head you think , you can do that easily – as you have already done it before in your whole life and you think 🤔 oh !! its just a cup .. I will handle it lol. But I would certainly not change anything that has helped me to LIVE a normal content life. Cheers to the amazingly beautiful 12 years -where I did & learned New things which I would never had -if I didn’t had Myosotis .
So Basically people adapt accordingly in whatever way they are comfortable in. We humans adapt according to our comfort level in every way. Our habits, life style,perspectives – all change according to their comfort level . May be a guy who ONLY wear particular kind of t -shirts might be wearing those coz he got thyroid and he knows he’s bit bulky & those type of t-shirts makes him feel comfortable or the girl who ONLY wears particular type of loose tops or loose jeans may b coz she got PCOS ( she thinks she’s chubby) .. Not only the way we dress but most of the things we do & the way we think .. depends upon your particular needs , comfort level & life experiences.
Yeah let’s not forget that for some people it could be fashion and they keep on thinking that you are doing this particular stuff coz of fashion. ( got few stories on that too.. May b in next post 😜) . Well some do have those kind of luxuries to follow trend in life but some simply don’t. But we all can be beautiful in our own way regardless of any experience ( good or bad) , disease, life events , tragedies . LIFE shapes you the in way you look, the way you think & the way you do things . Basically , life shapes you in the way you live . There’s a story behind every person . There’s a reason why they look the way -they do. There’s a reason why they think the way -they do think . There’s a reason they’re the way they are . There is always a REASON. We all can shine in our own way with our own light & bring out something beautiful to give to this world .
Happy Easter all.
Hasdey wasdey Raho
#Livelovelaughbutnevergiveup
#polymyositisawarness
Going to come back with a 👊🏽

Nanak Dukhiya Sab Sansar🙏🏼

Translate – All in this world are unhappy ( except those who have established a life in the beyond ) -a saying of Guru Nanak Dev G – Founder of Sikh Religion.

Again writing from hospital .. lol ..!! I guess hospitals gives me drive to write while sitting in waiting areas for different scans & wards 😜

Everyone feels their problems are the BIGGEST amongst all. All you hear every time -Oh man!! Just try to walk in my shoes for a day . You won’t even last for a minute there. Everyone feels they got abundance of worries, problems, troubles & their life is mess.Most of the people are walking with empty hearts. Most People are broken from inside whilst looking complete from outside. They are just happy on outside . They are looking for happiness. No one is satisfied & content ( & believe me they got EVERYTHING…Lol..!! ) Still they find something is missing in their life. We all have a happy story to share & a wound to hide, a story to tell, a tragedy to share.. our sad story.

All these years in & out of hospitals , I have listened to people’s stories .. of their struggles .Trust me ours( those who are reading this blog with their own eyes and typing with their own fingers ) are nothing in front of them .

A heartily beautiful girlfriend / fellow patient of mine who has no fingers on one hand wishes that one day she could type as fast as a normal person would .All she want is to type with her fingers .

A former student of mine ( as I worked with SEN – Special Education Needs students in Schools in London ) who is partially blind just wishes to see our beautiful world (at it’s full potential) . Maturity at that student life age comes only with learning to adapt & accept the beautiful reality of life that you are just differently abled person than others . People with learning disabilities & all sort of differently abled students are much more mature and compassionate about life than us.

A fellow patient ( 45 +age ) on electric wheelchair sees world more brighter than us normal people.He got no arms below elbows and no legs below thighs , still he got more happiness & love than us all combined together. We Bragg , nag about tinniest little things in life , which don’t even matter at all in real life. All nurses says ” when he used to come to have regular monthly blood plasma transfusions , he was as bright & happy as he is now” . Now he’s been discharged from monthly blood transfusions, still he comes over to hospital ward once/ twice a month to just say hi to nurses & fellow patients . I met him & trust me I have not seen a happier person than him in my life. The spark in his eyes & that broadened infectious smile on his face – one can never forget . Then I got to know he lives alone and maintain a perfect lifestyle on his own. He said same thing as I heard from fellow differently abled people – that – he don’t like to be pitted or someone feeling sorry for him. I do try to do my own things on my own. No bad weather, no pain in my body ( trust me chronic pain is hell lot worse ), no negative emotions ,no other human being , nothing in this world can stop me from getting out of bed, getting myself superbly ready and going out to enjoy the little things in life like buying my own bread, going to parks, malls, having nice coffee around while reading a book 📚

We ,fully abled people think – shit..!! I didn’t get good grades/ scores, I am being bullied, I am not well ( normal sickness which every human goes through ) , I didn’t succeed in life, my friends doing great , I didn’t get married, I don’t have enough money , I got these responsibilities, I don’t have kids, my kids don’t study , my neighbours are more rich , my dog isn’t behaving as training, my car isn’t big, my life’s trash, my career Isn’t going to next level & all sorts of silly little things . Well man !! Look at the ones who don’t even have a fully developed brain to even think that- what he got or not in life. So I was just sitting in hospital waiting area today. Suddenly we hear shouting and we all looked . There was a guy (20+ yrs) came on electric wheelchair with his parents ( I guess) . He had no sense of being where he was and why he was there . He looked normal but after a repetitive period of time , he just shout – haaaaae .. After sometime , a nurse came ( as she realised other patients being disturbed by the noise ) & asked his parents ” would you like to go to another room to wait ? ” Parents said yeah and they moved from there to another waiting Room. So, I just meant to say , we all are blessed to even rectify & know that what we need and what not .. what makes us happy and what not .. we are blessed to have BRAIN to THINK.. which is quite a huge thing to have .🙏🏼

We are blessed to have people around us who love us .. to have eyes to see world to full potential.. to have ears to listen to music / path .. & that we can convey our message to others by speaking or we are blessed to do path/ prayers . We are blessed that we can THINK . We should be grateful to God to have given us such huge priceless privileges that not everyone has. We should be happy with what we have . Most of us have what others want. As I always say, I am happy with what I have and doing superbly great with the gifts provided to me by God and will continue to live happy. No disease, no man, no thing can decide whether or not I should be happy . No one is in charge of my happiness. No one has the power to make me feel low or unhappy . It’s me who can make me feel happy or unhappy. Mostly it’s our thoughts – we can be happy in worst situations and sad in most happiest moments . All is in the head 🧠. They way you think , the way you become .

Stay happy . Once you start being happy in all situations , you will see difference in your choices & human nature. Don’t give right to ANYONE to dictate your happiness. You just need YOURSELF to be happy . Don’t wait up for things & people to make you happy. Don’t think that if I get this thing ( house, car, watch .. any materialistic thing) or if I am with that person , then only I can be happy . You don’t need anyone or anything to make you feel complete or happy. Being alone DOES-NOT mean that you are not happy . Happiness is a journey . Enjoy it . Embrace it & as I always say.. Girl ! You got 100 marks only in One life ( read my last blog for reference 😘)

Stay 😆.. Stay content 🤟🏽

Hasdey wasdey Raho 😍💕👍🏼

Tere Kismat Da Likhya Tere ton koi le nahi sakda

Teri kismat da likhya tere toh koi le nahi sakda, je usdi mehar hove te tenu oh vi mil jaaye jo tera ho nahi sakda.
Translation: No one can ever take your destiny from you. If you have faith in his power and you have his blessings with you, then you can even get what you thought you’ll never have.

Friend & family circle

Has anyone ever thought about this concept ever that WHY we only love people we know or meet ? I guess coz we are close to them. We know them or we like them or we are born in that family . But then WHY we only compete with the people who are in our friend , family or relative circle? Have we ever competed with Sundar pichai or Mark Zuckerburg ? Why we ONLY compete with neighbors, friends, relatives, colleagues? Compete in the sense that “ oh that friend or relative got good marks in school, good ranks in sports ( these days Taekwondo, Judo,Chess and what not.. oh !! Certainly , My good old days were way much better ), got good house, got good job , then it moves on to next levels.. children, their study , their job, son in law , daughter in law, their jobs, their houses and the list is endless.. We only get jealous of people we know of in our circle .

Have we ever got jealous of some Girl/Guy living in Greece or Thailand ?

The Big Question is-Why we even get jealous?

The Most amusing thing I find is jealously of jewellery in women and cars/watches in men ..I mean these two are definitely at the Top of the list of jealous things. Lol !! Why we blame people we know or are close to. Have we ever blamed prime minister of Nigeria/ Serbia or any other country PM rather than our own PM for anything ? We humans only compete, love,hate,Challenge,Hurt,betray, blame people only in our circle .

After living in this diverse city for so many years, another fact what I came across is we never gets jealous/ insecure from any other race rather than ours. First in jealousy/ insecurity lists – tops- our own community fellow, then own country fellow and then some other races. Like in the priority jealous list for a Punjabi ( purely an example )will be first another Punjabi, then another Indian and then comes brits or any other foreign . Funny na..!!

Not only us, we bring our kids into same game circle unintentionally. Same game of hatred, competition, blame & jealous. Kids follow their adults Always.. whatever their parents do , they tend to do same and whatever their parents think, subconsciously kids adapt same feeling/ Thinking . If someone parents keep talking about “ oh that Friend/ colleague/neighbor/ Relative or known person in their city- got bigger cars/ good marks/good job/good money and what not.. list is endless.. Not only this some parents even compare the looks of their kids.. lol !! then kids start behaving and acting in similar manner as their parents feeding them. You are unintentionally upbringing a child with same mentality as yours and then you ask them to change their thinking when they start behaving exact same as yours..

A funny incident- I met a school friend (who moved to another country ) after ages. Now she’s a mother of 2. Responsible & well grown professionally . She told me that “As kids I was jealous of your skin colour. That you can wear suits of any colour while on the other hand , I have to wear only those colours which suits my skin colour” and trust me , she’s not at-all dark.. just wheatish). I was so amazed by her telling me this after so many years . But by the fact that she admitted this thing , it simply depicts her maturity level. I love you to infinity if you reading this . So, as kids we are insecure or jealous of stupid things . Sometimes the things which we are born with & literally got no hand in it 🤣 which we realise in our later life that those were stupid thoughts😂

what we forget as humans is everybody gets 100 points in life means we all get 100 marks total in health , wealth and Love.

Some gets 30 health, 30 wealth and 40 in love.Some gets 10 health, 40 wealth and 50 in love, some gets 0 health, 50 wealth and 50 love, while some gets 100 health, 0 wealth, and 0 love & so on.. So think of all the probabilities of 100 being divided into 3.

We as humans tend to look at the highest marks of others while we ignore their lows/ zeros and then start getting jealous of that highest while not embracing our highest but keeping our lowest on top in our mourning list. That’s the basic difference.

The very first question they ask is how’s your blog going ?

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 .

NHS Superhero’s #myregulars

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👊🏽