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The Neuro Navigator

ManjuChronic Neurological Conditions

This film features Manju, a spirited individual living with CRPS (Complex Regional Pain Syndrome) and Fibromyalgia. The story unfolds as Manju, a former air hostess, navigates the challenges of acquiring an invisible disability. Joined by her deaf sister Anju, Manju unveils the complexities of conditions that alter pain perception and create hurdles in daily life. Witness her resilience as she adapts to lifestyle changes, utilizes aids for sensitivities, and embraces a spectrum of capabilities. This isn’t just a story, it’s a celebration of finding joy in the small things and proving that disabilities can’t dim the sparkle of a vibrant spirit.

Transcript

So, I acquired a chronic neurological condition which is known as CRPS (Complex Regional Pain Syndrome), and the second one is Fibromyalgia.

…O M Y A L G I A…

Hello, my name is Manju and she is my sister Anju, right

So, both of us, we grew up in Kolkata and we did our education also in Kolkata.

While I acquired a disability later, my sister…my sister, she was born with a disability, she is deaf.

And that is why I am trying to sign and let her know what our conversation is about.

And I was working as an air hostess in the flight, and then later, during my work phase, one of the days, I just fell down in the aircraft.

And it was a very…

*
So, these conditions primarily affect how your brain perceives pain because…it was just a simple fall.

I was just working in the aisle and I just fell down.

And later it was only swelling and red color and pain but slowly as days passed by it became very severe.

And I was completely in bed.

I developed a lot of sensitivities, touch, smell, sound, bright light.

And it has been a process.

I acquired it at the age of thirty years and it has been in the last twelve, thirteen years, I am just learning how to live with it.

And I would say, proudly living with it.

Now I do not feel upset about it.

This was very new to us as a family because initially it was just a fall.

And I was wondering what happened, why is it taking so long, why am I not getting better?

Then slowly and gradually, after showing lot of doctors, we came to a conclusion.

That in itself was a very long journey because the doctors could not understand what is happening.

I went through a lot of diagnosis and at the end this is what we finalized upon.

So, what happens in this is, as I mentioned earlier, that your brain perceives pain in a very different way.

Even a simple touch is painful and we did not know many people who had the same medical condition as I have.

So, the family was in doubt, I was in doubt, I did not know.

I lost my job, at that time.

Didn't know what the future has for me.

I feel like I've come a long way and today I use a lot of solutions to enable me and function better.

So, for example, I'm using a cushion.

So I use cushions of different texture, like something which is more softer.

Even the clothes that I wear because I have touch sensitivity.

Like, when I'm in a lot of pain, then even clothes of a different texture would incite pain in me. Right? And I had to gradually get used to it through a lot of therapies.

A lot of psychotherapy, then a lot of physiotherapy, occupational therapy, different kinds of therapies, which are still continuing in some form or the other.

The treatment still continues though I'm shifted to a combination of alternative treatments and allopathic treatments at the moment.

Similarly with light, there are a lot of times when the light disturbs me and I would wear sunglasses so that it doesn't bother me as much.

I keep on getting a lot of headaches because it's just not the pain, there are a lot of symptoms that come connected with it. Right?

You develop a lot of gynecological issues.

My mobility was severely impacted so I started using mobility aids.

And even that was a journey because we were thinking whether I should use a wheelchair or not because doctors wanted that I walk.

And there are times when I am able to walk, now, better than before.

So, earlier my balance was not okay. I would fall down.

So it is like, I have again learnt how to walk, again learnt how to talk.

I go through a lot of fatigue and a lot of cognitive issues, I would forget very often.

And earlier when I was still in my therapy I would just stop.

I would talk and stop, because I cannot recollect what the next word is.

Like, I know but I'm not able to pronounce it.

This is something which we call as Brain fog.

And it was very severe. Now I have, I feel it's a journey for anyone who is living with similar kind of conditions as me.

The ecosystem plays a very important role.

Your family's support is very much needed, because this is something which is not visible.

People would just not understand what, nothing is there, like everything is okay.

In x-ray reports nothing is shown.

In MRIs nothing much comes up.

All your blood test results…except inflammation, which is a bodily parameter of showing that there is something going on in your body.

Apart from those, everything else was fine.

And we were wondering what is wrong, we just didn't know.

Then internet came to the rescue I would say.

While I was in bed I would go through, read a lot of articles, join a lot of support groups.

And then, started to see that there are many more people who have same kind of conditions as me.

Earlier it was only me, I did not see anyone else.

Both CRPS and Fibromyalgia, both have no cure, as such.

It could be managed with a lot of things and you go through a spectrum.

Even in this also there are people who still have much more…of a severer degree, and there are people who have it mild.

I went through a very severe phase.

I think now I'm coping up and functioning very well.

You need to make a lot of lifestyle changes.

You need to understand your capabilities, at the same time, push it also, because otherwise I would not know how much am I capable of.

But you need to take it slow.

I've spent these many years in understanding it.

I would say I'm still learning about it.

There are times I overdo it, like when I meet people and I feel like talking and I'll talk a lot and my voice goes down and I'm not…

Then Sign Language comes to rescue.

I can write and I can sign a bit I'm sure.

But it takes a lot of effort, even signing.

So it tires me, but then I enjoy it.

So it's a balance I would say.

You need to understand what you need to do more at a given point in time.

I need to plan my day well and need to know, I really prefer that I get to know something earlier.

Suddenly if something comes then I get disturbed.

Lazing around is one favourite thing.

Listening to songs, cooking and I enjoy a lot of DIY activities like making something at home.

Those are a few things that I really enjoy.

Reading up a lot of things, any kind of material that comes across and it captures my attention, I would just read.

*

I also, with regards to sensitivities, I also use these aids which I use for sounds.

So these are these hearing plugs which I just put them in when I'm in a noisy environment.

I use these noise cancelling earphones which blocks a lot of noise outside and I feel a little relaxed inside.

And it allows me to focus.

As I said that it's a spectrum, right?

So there are times when I am less fatigued.

So I'm able to walk as well if…now that I'm on a motorized wheelchair all the time.

When I have to walk a lot or do a lot.

When I'm really tired, then I use this.

Otherwise I would…

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