Pricks & Doctors

I did my first self-administered (inflicted) injection! I was all ready to do this, till of course I had to actually give myself the shot! Then I hummed and hawed and honestly was quite sure I wouldn’t do it- till I took a deep breath and stabbed myself.

It wasn’t fun.

Multiple staple pins, shooting pain and then blood! But this time I was better prepared. I iced my thigh, rested my foot and even took a day of rest.

Of course during all of this I was also asked to take a battery of blood tests. The results came in and it was pretty good. Through all my pain this was my bright spark and honestly was something I was happy about. Not that this made a difference to a sulky doctors assistant who went thru the tests… They were all normal, some even low… But of course she said they weren’t up to the mark. They needed to be lower… or what’s the point!? I shouldn’t even bother her again with these types of results. I pointed out that after 12 years I finally had such great numbers. She didn’t care. Consult an endocrinologist, get better sugar results… then lets chat! But I was below normal. “Go lower,” I was snapped at. And then she cut off the phone like the 5 seconds spent on the phone with me was a huge inconvenience.

And that ended my good mood and started my stress. Luckily for me, I had Neelima and Ankita drop by to just hang and deal with me.

My body felt like a truck had run over me and then gone back over me to finish the job off; and then there was this test issue… I was glum. I wasn’t even sure that a girls’ day would be close to what I need. I needed a good cry and trash tv. But I was wrong. A totally wonderful day where I was allowed to crib about the hundreds of treatments that were being experimented on me; to screaming about my feet nerves crossing; to hating the annoying docs who were more about the business and less about the empathy- I was heard. We gossiped. We laughed. We exchanged war stories and spouse stories- some of which were the same (😜), I had a day where I recovered. When songs say “love will keep us alive…” they were right….! I felt love in the room and I actually felt physically better!

But it also brought an important point up-doctors. Over the last few years I have been thrown around like a rag doll from one doctor to another. “Give my reference ,” doctors insist as they send me off! And of course there’s a finders fee I’m sure which I don’t really worry about, but it’s how some doctors deal with patients that irks me. Whereas there are a few who really seem to listen, many of them seem to talk at you rather than talk to you. With a disease as troublesome and as complex as MS during the off days it takes just a single harsh word sometimes to set off a flood of tears, I’m amazed at the short hand doctors use and the ways I’ve been over-billed; under represented and used as a pin cushion and petri dish for numerous experiments (most which have failed).

This is a profession based on care and whereas I have been lucky to have a few who have cared passionately and furiously- they have been limited by their expertise. I have met many more unfortunately who have been smug, superior and unkind. They have been just general A#$holes!

Know that when someone is in so much pain… it’s ok to say “I have no idea…” It’s not okay to hurt them- physically or emotionally. I don’t know why it hurts people so much to just say “I don’t know…” Those three powerful words don’t make you any less, in fact it allows you to learn. It doesn’t hurt the person you are misdiagnosing and it makes you a more evolved person cos it’s ok to say “I don’t know.”

P.s.-: Today I spoke to my GP (one of the good guys). “I don’t know,” he said; “but give me time…this is a mess!” He’s right. It is a mess and I trust him more for saying “I don’t know!”

My Painful Valentines!

The first injection was awful. The poke wasn’t that bad if you call being stapled on with a staple gun and numerous tiny staple pins not bad… But it was only after the injection, the real pain began.

Now keep in mind that knowing I was starting a new injection, which guaranteed painful side effects; you’d assume I’d schedule a quieter week. If you did assume that, you know mw not at all! Monday’s injection was followed by a hectic work week, a family dinner, meeting Magic’s prospective mate, Pawlentines Day (Valentines day for puppies), Valentines weekend game night with friends, another puppy meet with thee prospective, walks , exercises and we were still not even at the weekend!

So but obviously by my own Valentines Day I was too sick to move and too much in pain to even try! But this didn’t stop me from trying to plan the upcoming week choc full of activities!

That’s the thing, we all have our pain, our stresses and our drama. We can either let it consume us fully or we can celebrate the day- every day with people, with love, with laughter and with friends.

I choose to not let this injection consume my life, to not let MS take over and instead am happy on most days to be surrounded by everything amazing to even care about it! Luckily for me I have an indulgent, loving family and and the most lovely husband who allow me to do way too much and then pick up the pieces as I collapse without doing the ‘I told you that you should have rested …’ routine!

We have a week’s break now before injection 2 and a higher dose. Naturally I have Bablu to keep me company in case I ever need to vent or all at someone… he is the prefect foil. He won’t take away the injection pain, but it’s fun assuming that maybe I could one day stab him with it!

The husband is romantically trying to redo Valentines Day…and my mom determined that at least some of the pain is caused by a wrongly directioned (vaastu/ feng shui…something) has been busy trying to redo the rest of the house that Bablu doesn’t inhabit.

I, am however enjoying the few days before the injection and trying not to cause myself more pain by tripping over my newly reassigned furniture (love you Amma🤗😘)

Pricks, Pokes and Bablu

Today is yet a new drug trial… on me! It’s been pricks, pokes and meds non stop for us to find out which works best for me! And though I do believe that I’ve been taking them all like a trooper and making as much fun of myself as I possibly can; I’ve realised I may not be as ‘cool’ about it as I thought!

On my seriously early morning walks,(we wake up at 5:30 to walk Magic); I have been irritable about the smallest of things… A cat I feed ran a bit too fast, I was cross. The robot was not cleaned the way I wanted before I left, I lost my temper. The hill is too steep, the cars too many, the fighting dogs a bit too loud- everything bugs me… And that’s when I realised that these were manifestations of my fear.

I was afraid of the injection, the new med, the side effects… and this was how I was coping. Finding the smallest , most inconsequential things to scream about…and taking out my frustrations on them!

Add to that there was ‘Bablu’- the contractor from hell who has chosen me to be his mission. Bablu arrived cheerfully on Saturday after week long discussions with the husband and then proceeded to throw all our well laid plans in to a fine mush of rubble and do exactly what he wanted. So Saturday was filled with drill noises and breaking for him; and a severe migraine that went on to Sunday for me!

Th injection just finished and was like the rest of my medicinal encounters – a family engagement, with everyone coming together and volunteering tidbits, worried murmurs and even an ‘injection video’- yes that is a thing! The event was quick but I’m told the side effects, which now seem to be coming on, are long and painful and annoying! There will be fever, chills, aches and pains and bruising…But to add to it all , there will also be Bablu!

So yup fine start to Valentines week!

My world stopped.

The diagnosis was uttered in between a sentence. It was almost an after thought… It was just said. “For the MS lets start Aubagio…”. The words continued but for me it stopped at ‘MS’. “What did you say,” I questioned. “Don’t worry, I’ll send you the entire prescription,” the doctor continued almost without losing a beat. And in a few minutes there it was in ink – a prescription for a disease I’d known I’d had for 15 years now… but a disease that needed a diagnosis to allow me to get the medicine I needed to control the attacks.

I don’t know what I expected from the call. But after years of being told to do one test or the other and after years of being shunted from one doctor to the next because everyone seemed scared of making this diagnosis ; it was done at 2:30 in the afternoon on the 21st of Jan 2021.

For the doctor it was just a regular work day ; for me it were words that changed my whole life.

It took me a while to process what he’d said. I think I’m still a bit shocked. This was necessary and will help to control further degeneration but still…

I don’t know how I expected I’d be told… Did I expect fanfare or background music to emphasise the diagnosis? Did I expect him to congratulate me on figuring this out in waaaaaaay less than 15 years? Did I expect him to sit me down and tell me that I have an incurable illness in a bit more of a serious, more final tone. Did I need fireworks, a trophy for my smarts or a bundle of tissues for tears which should have rolled down my face because I had just been slammed in the face with news that would change my life as I knew it.

In these last 2 weeks I have tried medicine; been allergic to medicine; changed medicines and now starting injections. It’s tiring, scary, painful and often overwhelming.

But in these last 2 weeks I’ve also done 3.5 km walks, multiple shoots where I stand the whole time, 2 puppy get togethers , a couple of dinners out and tons of new exercises in between WINNING AN AWARD !

My world stopped for a minute and then just like me, it just started spinning a bit faster!

Let there be light…

The drama of 2020 was due a cinematic horror film release…. Last year none of us would have even fathomed the destruction, the death or the depression that 2020 brought in plentiful.

It was an odd year to say the least…We learnt a lot… and most of us will definitely admit that. Whether these were lessons we wanted to learn or not… they were taught to us and we had little choice but to comply.

This year taught us self reliance. To be alone with ones self and more importantly with ones’ demons was something we had to learn. This required denial, negotiation and eventually acceptance and we had to learn to be ok with who we are…faults, flaws and all.

2020 taught us the importance of family and friends… when we were alone.. it allowed us to learn how to lean…For a person who always believed I was all I needed… I realised I needed a village… Thank you to my Family , Neelima, Gaurav , Ankita, Sachin, Puja , Ahmad, Nosh, Yusuf, Amit, Shalinie, Amar, Natasha, Deepak, Shalini, Sid, Eika, Aashni, Gautam, Minal, Nam and Ronak and all those who put up with me and celebrated the unimportant moments of 2020 and still made them super special.

I learned to give.In my small , silly way and by feeding all the animals I could find, I learned how important it was for me to give. Aditya and I fed dogs, cats and crows and looked after all those we could and in turn we were blessed with unimaginable love and puppy kisses…

2020 taught honesty. In it’s harshest, most scary, most naked form- wee learned honesty. But most importantly , we learned people could take it, not judge you for it and you weren’t looked as weaker, sadder or less because of it.

We learned kindness… kindness towards others but most importantly towards ourselves!

We also learned gratitude. Aditya and I got back to office June 1st and since then every day we’ve been at work , we have felt lucky , felt proud, felt special.

2020 has brought us 2 of our greatest quarters ever but that has required a true mindset change. This change was necessary, I’m sure; but may be we should try and not wait for a pandemic to make or feel a change in our lives!

It gave us clean roads and clean air but we had to wear masks to move around… It was almost symbolic of the fact that we have been given so much goodness but it took a pandemic for us to realise its’ importance.

It made the world smaller but disallowed travel anywhere.

It terrified us , scared us, but taught us… my 2021 hope is to learn with open eyes but without fear. To try and see and be grateful- grateful for each moment, for every friend, for every experience and for every trip,

My year ended with steroid injections – fitting for a year that passed… but I know it’s only to make me stronger, wiser and more grateful!

Where 2020 brought us fear, I hope 2021 brings us joy and kindness. Let’s make it an incredible 2021.

P.s. (Palat says)-: Happy new year… let’s be a new improved 2.0 version of each of ourselves the next year!

My Death Sentence.

“You will never move again. Your brain has been compromised and you’ll be left side paralysed. You should have come here sooner.”

These were the first words I heard from a Doctor in 2005,on the first Monday of June after I seem to finally awaken from what seemed to be a long, very uncomfortable ‘sleep’ from the Friday , 2 days prior

“Don’t believe me ?” He challenged, his eyes beaming with what I can only describe as sadistic pleasure….” Try… make a fist with your left hand… go on now- try!”

Not one to give up a challenge, I tried in vain to make the fist and hopefully punch his smug face; but the hand wouldn’t listen… and so my right hand covered my left protectively and made the fist, which still refused to punch him or move in any way much to my great dismay!

That day was like a death sentence. To say that my brain had been compromised , was shattering. I knew that if all my hopes and dreams went to dust in my life , I still had my brain and now I was told it was ‘compromised’, whatever the heck that meant.

Now there are 2 ways to look at every situation- 1. Curl up and die. 2. Get up , dust yourself off and start over.

I got up and restarted.

This year has been like that.

We all suddenly woke up from the new year hangover to be locked down and scared. With very basic, worrying news we didn’t really know what was right and what was just rumour- #FakeNews. And the rumours abounded and the fears kept increasing.

The doctor that I had ,knew so very little. He was afraid to tell me he didn’t know what was wrong with me and just tried to scare me. Had he been successful, I would be no more than a whining , bed-ridden woman, angrily typing out a blog with one hand! Not only can I use my left side, most people, in fact literally every one except from me, wouldn’t even be able to tell there was anything wrong with it, ever!

And that’s what our newspapers sell- fear and more fear! That’s what runs the TRP’s on channels and sells thousands of newspapers.

Now Covid is here to stay for a bit and yes the virus, like most will mutate and change. But rather than selling and propagating fear; what is necessary is to be smart, be clean, sanitise, take precautions, stay away from people, test and WEAR A MASK! The people propagating the fear would rather not do that, they’d rather roll over and play dead… but then you must realise, this disease, nor the next nor the next aren’t leaving. You have a choice- to learn to be responsible and work with it or roll over and fear monger or hide! I’m not saying go out, be irresponsible and not to heed warnings or rules that the government puts forward; what I am saying is this disease is here to stay and if not this, it’ll be something else, what’s most important is that we learn to work responsibly with it and keep positive.

I hated the words ‘new normal.’ Post covid every one says the ‘new normal.’ Post my diagnosis , I too lived with a ‘new normal.’ But actually we each live a ‘new normal’ every single day. Because each day we go through experiences and feelings; we meet people and deal with situations that make us deal with tomorrow differently. Hence it shouldn’t take covid or multiple sclerosis to teach you the words ‘new normal.’ Every day is a new day for you and me and hence a new normal exists every single day!

This year was a frightening flashback to 2005 for me. I was scared, had misinformation and this was propagated and sold as fact. It took me time to learn what I needed to learn and to gain the confidence to stand up not just on one foot but on both!

We have one life and we have one way to live it. I choose to live it responsibly but joyously. I mean that’s what got me up… my left side didn’t fix over night. It took time and tears but I healed and learned to live with my multiple sclerosis (yes, non curable). The world will heal too. We just have to help it heal and not keep pouring salt (fear/ irresponsibility) in it’s wounds!

P.s.(Palat says)-:Whenever any one says they love my spirit, I smile; but in my heart and my now in my ‘compromised’ brain that honestly this was my only choice – to just live.

It’s an MS Day…

It’s an MS day and though that may mean nothing for some and confuse the rest… I’m going to try and explain it the best I can.

I have multiple sclerosis.

On most days you wouldn’t know that because between my fiery, quick speech and the fact that I literally never stop doing something, you’d be actually more than grateful if I breathed a second or spoke a bit slower…! Trust me , even Alexa prefers that I speak slower! 🙂

But then there are the MS days… they creep up ever so stealthily and then it’s boom! It’s pain. It’s exhaustion. It’s pulls where I didn’t think pulls could happen… and pains where I didn’t imagine muscles or nerves or anything.

Those who know me worry, those who love me hurt… but it gets better and what I really need is everyone’s combined belief and prayers that this will end! Know that I may be cranky, pushy and a bit more difficult than usual… and for those of you who are wondering how that’s a change from who I am… It’s just that on these days I find it hard to be the powerhouse I like to imagine I am so I have to push just a bit harder to make what I find to be normal to me, to just happen.

So today is an MS day… I’m stumbling a bit… walking around a bit funny, holding my back in pain and then sometimes my left arm and then sometimes my fingers; I’m finding the day longer than usual but I’m happy to be at work. I’m finding the words longer, the typing slower, the focus requiring more energy of me, the food harder to eat, even though I carefully chose my favourite foods and the little annoyances, annoying me more than usual!

Some MS Days are a lot worse. The pain is terrible. I sometimes slur. And I often walk funny… so though today is an MS day… it’s one of the easier ones and that’s awesome!

You have to find the highs even in your lows or else you won’t learn to look for them.

I’ll head home post work, have a cold shower and jump into bed with a mindless comedy or a crime drama that’ll allow me to quickly crash and wake up tomorrow to a better day I’m sure… cos today is an MS Day.

P.s.-: Had the most incredible shoot last week and every time I feel even a little bit low it gives me joy to know that I had such a great, great week! Pain is often overcome by happy thoughts and puppy cuddles!

Absolute Power Farce- News and Social media!

And the week was a sapping week… The lack of sunshine didn’t really help the mood. We had London weather, without any of the cool breezes or nips in the air. It didn’t help that the MS pain is returning ever so gradually warning me with new pains in areas that I didn’t think could feel pain in and some I’d actually never given a second thought to.

And then there was the news or what I now masquerades as the news. It is however now no more than a bunch of people shouting as loudly as they can, listening to nothing but the sound of their own voice and doing this on repeat! Every channel, every ‘debate’ eventually disintegrates to a contest of ‘who has the loudest voice?’

And what is lost- is quite simply the news.

The news is supposed to be about facts reported almost dispassionately, allowing a watcher to be challenged to think, to form opinions and to be informed. What we now have is a market place of screaming individuals whose opinions actually do not and should not matter. I , as a viewer would like to think on my own, make up my own mind and form my own opinions- but apparently that’s definitely not entertaining enough. A news program begins calmly, immediately moves in to a bout of shouting and then ends and we start the farce all over again!

And then there’s the joy of social ‘media’ where everyone now feels that they too are the media and whether they make it to TV is not the point, they will broadcast their opinions whether or not they are fact based. They will sensationalise. They will troll. And they will do whatever it takes to gain more eyeballs.

Today’s news and social media is not about reporting the news – it’s like a boxing match except here there are no winners.

The truth gets lost. Facts get destroyed and lives are shattered. Legality and illegality don’t come in to the mix. We the audience are the judge, jury and executioner and that’s far too much power. As they say ‘absolute power corrupts absolutely.’

P.s.(Palat says)-: In between all the negativity and shouting, remember to take a moment to listen to that inner voice of yours…you’ll be surprised at the calm you feel

The Politics of being a Woman

Now none of this is to allow you to infer my personal feelings on the current Sushant Singh Rajput case or my feelings on Kangana Ranaut, but this week was an embarrassment!

Whatever the final outcome of the SSR case may be; the hounding of a woman as she entered a CBI space for questioning was deplorable. Not only did we not maintain ‘social distance’, we invaded her space as if she had no right to even move or even have space. We poked, prodded and pushed her and captured every humiliation of hers and devoured it in glee.

And then we disallowed a comment made by Kangana and decided to abuse her in public and then proceeded to tear her office down which she spent years to own and build.

In one case we took away the freedom of woman to be able to be- to have even basic personal space and in the other we took away the right of free speech. Why should a woman be allowed an opinion at all?

And the criticism I have is not whether these women are right or wrong but how we went about making our displeasure/ opinions known. We asked for the CBI, but then when they come in, we still don’t think justice will be served by them? We still think we are better judges of character and that a public humiliation is what a woman deserves? We want freedom of speech; but only if what she says is what we completely agree with. A woman can’t or mustn’t have a contradictory opinion to a man and god forbid he’s a powerful man; then the only recourse must be to break down her home and shun her away from a place she’s paid for , built and lived in cos after all she doesn’t deserve a home if she has an opinion contradictory to yours!

I have always been of the opinion that there is often no right or wrong; but a grey area where often the truth resides. But humiliating women in public is not a grey area- it’s a black, black area which cannot and must not be tolerated. Whatever yours or my personal opinions may be on this – there is a right way of handling the situation and a wrong way of handling the situation and we went very, very wrong.

P.s.(Palat says)-: Take away all your personal opinions and just close your eyes and imagine for a moment she wasn’t another woman; imagine she was you. How would you feel then?

The Big Depression

The gloomy days don’t help and the natural disasters and unnatural disasters (Beirut) make every day greyer and longer. Then there’s the fact that there doesn’t seem to be a cure for Covid or any end for this pandemic in site. Add to that the daily suicides, desperately sad photographs that make every newspapers front pages, gleefully plastered with depressing headlines, it’s hard!

It seems to take every ounce of joy that I’ve stored in reserve to give me the strength to wake up every day. With the Multiple sclerosis playing up thanks to stress , these last few weeks have been painful.

And so I’m going back to the basics – to relearn joy.

I used to hold a class called i-Be Your Own Hero. This was a self help class that motivated you to look for potential where you didn’t know opportunities existed. A friend reminded me about this last week and I’ve started all over again- to retrain myself to look for joy. This allows me to go back to being a kid and be bad for just a bit. It allows me to cut myself some slack and allows me to celebrate the smallest of joys.

In a world that has systematically been breaking and with news channels who are earning by spreading fear, hate and divisiveness; it’s going to take time to build ones self up to see the colours in the sky- without Insta filters.

Michelle Obama has talked about depression.Others have too. Help lines are being overrun with calls.And yet they reach barely a fraction of society.

Now’s the time. Now’s the time to know you are not alone. Now’s the time to be happy- even if you’re not, even if you’re sick (like me), and tired and are low…we’re going to have to look for our own joy.

In this week I’ve found joy from Magic (my mini me), laughing at an impromptu standup that a friend did (thank you Amar!) , writing a new script and by playing Mono deal

P.s.-: Happiness is a choice we need to make. When all else goes against us, we need to make our own happy.

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