Having AS (Ankylosing spondylitis (AS)) does change the way you look at life, makes you very guarded in approach to life as a whole. At times you do not even see the options that others see in front of them.
Can you talk about it? No you don't. You do not even want to except for the one or two who you think can take it. But that one or two turns out to be a myth, its just you alone all the while.
The one pillar, the one who could understand me was my mom. I do miss her, she left for the heavenly abode, many many years back, but the ache still remains there. I could just reach out to her and say, today is a bad day, and she would know how to react to it.
This year added couple of more limitations or issues, facing reduced rib expansion and lung issues and Tinnitus. Tinnitus has effected both ears and its been there constantly for the whole year. Never a dull moment without the music in my ears, its become the music of my life.Initially its tough with onset of both of these, as you feel its hit, curse yourself for it, but then you learn to live with it. Mentally and physically its exhaustion for it limits more of your mobility and also your concentration. You end up having more sleepless night than ever. But you cant reach out ... and say it , your in more pain than before.
But for others, it is a burden, its a curse, its an excuse, its complaining, its irritation ... words cannot describe it. It just leaves a more gaping hole in you, and takes you back into your shell.
With time the shell hardens, with time you learn, but being human you commit the mistake of thinking, maybe you found the one, the only one you need who understands you, but alas, its not to be so. Another layer of hardened shell is born over the broken shell.
As if the world without Covid was not a challenge, this new world added a further challenge. The impact of it on AS is not know, the fear of unknown hits you hard. Its been a year now, more than it, being indoors shielded and away. You see the people venturing out into the brave new world, but can you brave it? Friends would look at your life as one of cribbing more, not brave, pitiful, complaining , egoistic .. and what not ... Do whatever ..
The one truth i understood, you will end up loosing all. Its matter of time. You and your pain will be left, the one and constant friend.
Options -
Risk it and see what holds in the future?
That begets the question - As if the pain is less, but the love for the pain is too much for the risk. Dukh me anand ?
So you want your painful life to continue more and so not risk it?
Yours truly - Dukhy Ananda :)
