MS- Made Strong

Today is World Multiple Sclerosis Day- World MS Day.

Where this will possibly mean nothing to most (hopefully); I’d like to tell you how having multiple sclerosis has changed my life.

I was officially diagnosed with multiple sclerosis at 2:30 in the afternoon on the 21st of January 2021- 16 years after having my first attack which had put me in the hospital for a while. Though numerous doctors had diagnosed me from Johns Hopkins etc and I had lived my life keeping in mind that in all likelihood it was MS I was dealing with, I still needed an official diagnosis from an Indian MS Specialist in order to start DMTs (Disease modifying treatments).

The diagnosis, though late by almost 2 decades still felt harsh and ruthless and made me feel very very scared. But it also allowed me the relief that all that I was feeling was indeed very, very real.

Let me decode this. If you have a cold, which you got because you kept your hair wet and sat in the AC and I meet you; I then get a chest cold which will last 3 -4 weeks after your 2 day cold. I will experience breathlessness. I will have chest pains and I may need to a nebuliser at a hospital because of breathing issues.

I have pain. All the time. You can’t see pain- much like you can’t see air. But it exists. More often than not it comes in spasms and causes tears. The good thing and the annoying thing, is that also these pains go often as suddenly as they come and so if you were to ask me about how my left arm is doing… I’d probably say “fine” cause it may have been awful 3 hrs ago but now the pain simply doesn’t exist- at least on the left arm!

There are MS days where there is slurring, walking a bit drunk (without having a single drink) and where I just want to curl up and sleep it off.

But you can’t sleep off MS. It is painfully real and massively under diagnosed or in some cases not diagnosed at all.

With the DMTs I now push a 9 inch injection into my leg every 2 weeks. It’s self administered . It’s painful. And 8 hours later, I am sick with the flu. I make fun of the injection. I make an event of every injection and I eat comfort foods straight after to make it all less scary.

The only thing that is wonderful-is that I am surrounded with love.

My family and friends don’t choose to pretend to “know the pain” , they don’t ignore new symptoms and they are there to learn, listen and support.

If you know anyone with this disease; read up about it. But don’t give advice on how to deal with it better or “what will make the pain less”. Know that every day , we are always looking for something to make it better, make the pain less and make this awful disease leave us.

Listen and support. Know that we may go wrong sometimes and cause more pain than less. But we will learn quickly and please avoid the “I told you so’s.”

As one of our very first music videos that we created loudly said “Mere joothe me toh chal ke dekh.”- Try and walk a day in my shoes… be a strength, not a rumour monger.

Also, and I know this shouldn’t need to be said- But I must. You can’t catch MS. You can marry if you have MS and have kids. You can work and get a great job with MS… or like me own a company or 2 ☺️. People with MS live wonderfully long and healthy lives. MS is not genetic. With the certain tweaks and lifestyle changes I have made, I probably push myself a lot more in the day than you. I am also much more self aware of my body and of myself.

MS is hard. Don’t make it harder with misinformation.

P.s-: On World MS day my only hope is people don’t wait 16 years for a diagnosis. I hope that people get the treatment they need as they need it and I hope that people don’t fear those with MS but instead learn to be there as a support.

Let My Country Awake !

Where the person is without fear and their speech not censored,
Where health care is free and oxygen is not based on black market price;

Where the country has not been broken up into fragments by narrow domestic borders that fight among themselves and against their people;

Where politicians strive for the greater good of the community not just for themselves,
Where politics works for the country and sets aside differences to work for its’ people,

Where the clear stream of reason has not lost its way into political speeches which have many words yet no substance;

Where the country is led forward by leaders who focus on health, growth and prosperity,
Into that India of a powerful tomorrow with actual leadership, my Father- let my country awake !

The Other Pandemic- Fear

We’re in the middle of a pandemic. As we watch helplessly as India’s physical health deteriorates and as we fight to try and get resources for the sick; we miss helping an entire group of people. They do not look unhealthy. They may not suffer outwardly. But they are declining rapidly, some even more rapidly than our patients that need oxygen. People are not just suffering physically. They are suffering mentally as well.

We are in the middle of a pandemic- mental and physical.

Mental health though invisible to the naked eye for the most part is as deadly as physical illness and sickness is. And unfortunately this is the type of breathlessness that can’t be fixed with oxygen no matter how much it’s given. These are the tachycardia attacks that don’t go away with medication and this is the sadness that is so profound and deep that it hurts infinitely more than physical pain can often/

And how do we fix it?

We don’t. We assume it’ll go away.

News and newspapers are culprits of the worst kind. They prey on selling fear. When you have a country who you could influence through your words ,you choose to spread fear. The job of the news paper used to be to report facts. Now we’re filled with headlines that put gossip rags to shame. We’re the gossipy aunt that would rather give you unverified gossip to scare you knowing that it’s the fear that sells, which in turn drives ad sales!

And what newspapers do this on a macro level; WhatsApp groups do this on a micro level. Whatsapp groups sprouted like bad mould growing on cake and have been growing faster with every day that passes. Unverified news spreads with the aim to cause panic and fear and the Negative Nelly’s becomes admins of multiple groups. It seems like all that’s shared is sadness and fear. And this only adds to those going through depression.

You have a choice. Just like we mask up and sanitise to try and stay safe from the Virus, we can choose what we’d like to spread. Even if you’re not spreading the coronavirus , by selling fear and sadness you are spreading depression- which is a very real, very scary condition which may take a lot longer than 14 days to fix.

So I mute the WhatsApp groups and remove myself from a few; and cancel a daily newspaper (gossip rag). There’s enough negativity in the world and to keep my health (mental) up… I think I might need to surround myself with people, puppies and things that make me feel more positive. I’m no help to the world as a Debbie Downer. And I can’t afford illness -physical or mental- in fact neither can any of us.

We may not be able to fight Covid. But we can fight the negativity and sadness that’s growing. That’s the one thing we can do.

P.s. (Palat says)-: It may be hard to find anything positive to wake up to but remember you have been chosen to live- so live with gratitude, joy and love. And try and inspire this in those around you.

Friends, Indians, countrymen, lend me your ears

Friends, Indians, countrymen, lend me your ears;
I come to bury democracy, not to praise it.
The evil that I have done will live after me;
The good people will be buried or left to just skin and bones;
So let it be with India. The hard working Indians
Hath told you India was ambitious:
If it were so, it was a grievous fault,
And grievously has India answer’d it.
Here, under leave of politicians, chief ministers and the rest–
For I am an honourable man;
So are they all, all honourable men–
Come I to speak at India’s funeral.
This was my land, faithful and just to me:
But I say you wanted more freedom than I could allow;
And I am an honourable man.
Migrant workers were stranded on the roads last year
Whose homes and businesses did they work for:
Did their desire to earn a living seem ambitious?
When that the poor have cried, India hath wept:
Ambition should be made of sterner stuff:
Yet I say you want too much;
And I am an honourable man.
You all did see that on the world stage,
I proudly sent vaccines for free,
At the cost of my own countrymen. Was this ambition?
To become humanitarian of the year…
No! as I am just an honourable man.
I speak not to take away your freedoms,
Just to take away your livelihood, sense of family and belonging.
You all did love me once, not without cause:
What cause withholds you then, to just senselessly listen to me.
O judgment! thou art fled to brutish beasts and political scavengers,
And men have lost their reason. Bear with me, I still have to campaigns in a few states;
My heart is in the coffin there with democracy,
And I must pause till it comes back to me….(Possibly Friday @8 p.m.)

Scared. Sad. (Repeat)

And as we approach the umpteenth threat of lockdown, this year I see a different approach all around !

Whereas last year we wanted to come back to work and life and ‘normal,’ now there’s almost a sense of foreboding and a depressed acceptance. Whereas last year we bonded with family and friends virtually and came together as a community… this year it’s seeming like it’s each person for themselves. Loneliness and a lack of hope seems to have replaced the fighting attitude and camaraderie that last year had in buckets.

Covid-19 cases are on the rise but mass immunity can only come with either infection or injection and since we’re short on injections in the country now (yes, I can’t believe we have exported double the amount than we’ve kept in the world’s second largest populated country)… we will need to take a step back and now make the citizens a priority. Vaccinate all. Another lockdown will not just cause thee economy to crumble ; I believe it will cause people’s wills’ to crumble as well.

But right now I’m scared -scared I didn’t travel more, see more, appreciate more. Scared I didn’t connect more, do more, achieve more. Scared I didn’t prioritise everything that was important and now prioritising things may bee a function of what is allowed rather than what is needed. So I’m scared. Sad and scared.

P.s. (Palat Says) -: This too will pass is all I have been keeping in mind as I work through all my fears of covid and lockdown… Be strong …! This must pass. Not sure whether I’m saying this more for you or for me :)!

Mushy Post

So this is a big one. 1-5! Aditya and I celebrate our 15th Wedding anniversary this year! This is also one of the first few years we’re not able to run away and travel together and my parents and sister have brought all our friends together to celebrate with us! From the silence of the waves lapping on a shore (our usual anniversary escapes); this one will be loud, raucous and with tons of love, I’m sure and I’m looking forward to it!

But this year I got more nostalgic than usual. 15 years of marriage and 19 + years of seeing each other and 25 years of knowing each other- Aditya and I have been together for a lifetime – a lifetime full of memories.

I remember the time where as I cried (for good dramatic effect) as I left home in the car after my marriage for the Taj; Aditya asked why I was crying. “I am leaving home,” I dramatically stated. “So am I,” he said. And he was right. Our home, was his first real move ever and even though our home still continues to go thorough numerous avatars; he honestly believes that we don’t still have all his stuff from his childhood home.

I remember when I moved in to the house and I was asked to step in red water when I entered my home for the first time; Aditya made Cookie our cocker spaniel do the same! From not ever having a pet to being the best puppy parent Magic could have, I love that about you Aditya!

I love our travels. From pulling suitcases across all of Paris, to jumping in and out of moving trains , to getting completely lost and then just sitting down to have coffee.I love getting lost with you. We’ve jumped off planes, we’ve dived with sharks ; we’ve helicoptered, rappelled and played with wild lion cubs. Thank you for indulging my madness and even pretending to like it sometimes.

You have taught me love. You’d fight the world for me and even fight me sometimes just to protect me! This drives me crazy sometimes. But I am so happy I have found someone who sees me the way you see me… not a lot of people get the obsession but I’m glad you have rose-tinted glasses for me!

I am the doubter. You are the believer. I am the over-sharer. You are the secret keeper. I am the obsessive planner. You are the facilitator. I’m the crazy one- loudly shouting how much I love you , even when you desperately want me to shut up ! You are the one with the quiet gestures – each perfect , each special but each nearly not loud enough 😂!

When I dream and fly high, you always ensure there’s enough rope to keep me soaring; yet allowing me the safety to know that you’ll be there when I need you.

You are kind beyond belief and always give the other person both respect and importance making them feel heard and listened to and cared about. I learn that every day from you.

I love that you encourage my madness, my dreams, my crazy ideas and my interactive game parties and even though I’m sure you think they are nuts, you immerse yourself wholeheartedly.

You make me a better me. When 26/11 hit me so hard and I started writing; you gave me a deadline to showcase my raw truth- a play that we eventually toured the world with. If you hadn’t given me a deadline, I’d never have written it!

You’re the perfect sweetness to my spice. You love sports. I love hacking. You love Coldplay… I’m Bollywood all the way! You give me the space to scream, the world to dream. You can annoy me in an instant and make me laugh even faster. You know my every thought as I am thinking it and know my change of mood in an instant.

You are my heart and soul and everything in between. I love you truly, madly, deeply (Savage Garden reference).

Thank you for loving me… here’s to many more laughs, tons of new adventures and a gazillion more memories (yes I know that’s not a number)

P.s.-: I’m sure today will be like every other. We’ll laugh. We’ll fight. We’ll fight some more… and then we’ll cuddle Magic (and I wouldn’t want to change a darn thing!)

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!

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