Meraki ~ 3


(C) Privy Trifles
Creative Khopcha
3:45 am
Few days ago I was casually chatting with a friend when the topic was my health. Amidst the usual updates that I was giving regarding the progress my disease is making my friend suddenly asked me, " So how much time does that leave you with?" It took me a moment  to realise that I was being asked about the mortality rate of this disease. I smiled and said, " Don't worry it is not terminal. I know people who have survived for 40 years with this. So I am here to stay."
This seemingly harmless question made me realize the way my friend looks at things. So here's an attempt at trying to tell her once again what is it that bothers me.


Dear Friend,
 I need you. I need you to talk to me, listen to me and discuss everything under the sun and not just my disease. I am already facing it day in and out. Talking about it constantly is depressing at times.

There are days when I reach the metro station and blank out completely not knowing why am I there and what was I supposed to do. So in case I forget your birthday or anything important that we had decided to do together please be patient.

Source: www.myyearoffaith.com
Don't pounce on me when I cancel the plans at the last minute. Actually sometimes getting ready in itself swaps me out of my energy so badly I can barely move. I have to lie down on the bed that is the extent of fatigue. It does feel good, knowing that we will meet, laugh, eat some good food and have fun. I know it will be a welcome change. But traveling for atleast an hour to enjoy that fun, seems like a battle front to me at times. I know it will all exhaust me very badly that it will take 2-3 days for the fatigue to go away. There are days when I just cannot and the very thought that I will have to scares me. Please understand it my friend it is not at all intentional. 

My disease is affects my weight too. So the moment you comment on my weight (gain/ loss) I don't get offended. Its just that my mind starts analyzing if that means I am going bad to worse in terms of recovering. 

It hurts to see that the moment I left calling or messaging without any reason it all has come to an end reminding me that a lot of relationships in my life were one sided where as long as I was doing things they were fine. The moment I stopped it all stopped. 

I know I am not going to die. I know it is not critical. But believe me when I say that sometimes it is painful in a whole lot of ways I cannot explain to anyone. I have, I can and I will continue battling this with a smile and tons of pride. Because one thing that I learnt with this disease is, "It's okay!" It's okay to say no, it's okay to not be able to do a  few things at times, it's okay to laze about the whole day as your body demands rest, it's okay to forget things and it's okay to fall & break things once in a while. It is a lesson in learning and unlearning which I am enjoying in every possible. 

If you can be there I will be glad, if you cannot then also I will be glad for I understand - it is not easy!

Best
N

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