What ifs and should haves

 Since the XDRTB regimen started I had to stop my OCD medication as I would throw up the TB drugs also and I cudnt risk to miss the tb medication. Amidst covid when hospital visits and any monitoring is hard I have very little control of my anxiety and it worsened my ocd. And what is more triggering is seeing posts everyday about ocd, especially what is not ocd.  Ever thought how  people who suffer from ocd feel when you belittle their life interrupting ocd rituals, compulsions, obsessions, intrusive thoughts and everything with your temperory doubts, orderliness, cleanliness or whatsoever which you apparently term as ocd because you think somebody else's experience is easy to imagine and you saw on the internet that cleanliness means ocd. It could be different for individuals I agree, but you want things organized doesn't mean you have ocd, instead of just saving ocd memes, one can go through testimonies, texts, booklets, experiences of people with ocd. It's disappointing

When I used to explain about my illness to someone I always say I feel betrayed by the state, hearing this people would come up with things like 'what did anyone out there has to do anything with ur illness,they would say there is tb bacteria in the air and you got it that's all, nothing else! and I would go on with "govts didn't tackle, their Inaction and thats how I got TB". And the reactions goes like 'it's sad u have drug resistant tb but blaming it on the govts is stupid, they say I politicize everything and then send me reports proving the govts stand that says they will end tb in 2025, 2030 in some. And today, now when there are even scarier reports coming up ppl are cheering for the temples and the statues again, they would come with another time frame and say we will end tb, covid or whatever and many would buy that. The thing is in between the cheering, the debates, the truth and the lies many are dying.

November2019. There is the culture test that happens every month and we wait eagerly to know whether it's a positive or negative. I wait every month to see if any of the doses will be reduced or changed coz ughhh those pills! I throw up by the very sight of it. The very thought about it, is pukish.  The previous regimen had it worse, the one called ethinomide or so(the drug was later changed as I was intolerable to it) it was yellow and made me hate everything in yellow or a similar tint. There is another one in brown, now I hate chocolate, colour maroon and dark red. Then many of the white pills and yeah some coloured granules to gulp too. The treatment is hard on various levels and nothing's really colourful about what everyone call as healing. It's somehow finishing the regimen/course and being tb free coz that's the only option.

People undergoing traumitizing medication, handling its sideffects and keeping up with the medication despite all the mental, physical, other difficulties are not obliged in any way to give  eye-opening health study classes and 'did you know' facts about their health condition to anyone!!!  Even if they are vocal about their conditions on social media, they do not owe you their time or labour to enlighten you further on this in your personal chat logs. Unless they chose to detail it to you without any doubt or on a full on consent or when they are fully ready.  Why do you think I am somehow supposed to brief you about my illness!  The energy you take to pop up in my inbox and type "What is drug resistant tuberculosis , send a voice note", use the same energy and find the answers online on your own, find it on authentic websites where its made available, stop expecting us to serve you with the info to your privileged heads.  I am no educator nor I claim to have any med

I have a strong dislike and aversion for heavy rains, these days it rains here, it kills my whole system, makes me even more hidden, weak and physically painful to a level my body cannot take it. When I had injections everyday; it was worst, the needle poking pain in the whole body would last long, wont go away. The numbness and tingling sensation in the body stay, its a sideffect of the horrible meds. The intake of the pills is nauseating and intolerable especially  during rainy time. I cannot imagine someone taking these meds in an uncomfortable weather, harsh climate or any intolerable conditions, coz having taken these meds for long,  to me its an almost sure thing that in discomfort I vomit and reject the meds and there is this anxiety racing on wat if I vomit the meds , knowing no doses should be missed.   I cannot go near the meds, would touch it only when I had to put it in my mouth, would then rush to wash my hands repeatedly until the tinge and smell of the meds leave (which

Messaging me 'You dont look sick', is not a compliment. Its infact  triggering to me as some of my relatives already pass comments like that showing disbelief about my illness. From the initial days of the pre xdr regimen i. e 2019, with increase in the duration of the medication, my fear also increased, we had tried to explain things to our relatives about how the regimen, sideffects affect physically, mentally and financially. My relatives and grandparents had always showed their very visible hatred to me and so the illness didnt do any good to the mess. With a lot of cries and breakdowns my gandparents were shifted to our aunt's place since I coudnt breathe or walk around in fear of infecting them. Cutting of these ties made me feel better in head. And some months passed now  and I am starting to walk around the house, starting to understand things and I look different now, I have gained weight, my skin is darker. So followed the problem, how come she has gained weight a

https://coursesonline.theunion.org/theunion/2020/covid-19-outbreak/304100 Kunjan🐱😻 supporting me in trying to get the internet connection right. The webinar went great!!! Thanks for listening  !Find the recording at the site!💜

Drug- resistant Tuberculosis opens doors to issues like poverty, homlessness, caste class divisions, unemployment, education, stigma, discrimination and a lot more, recent reports show covid19 is all of this too, a lockdown like this is unaffordable and dangerous for the already struggling. Hope this gets over real soon. Thankyou Ramavarman T,  TNN, to note about how TB patients strive the traumitising medication and isolation amidst all this.

https://www.azhimukham.com/positivestories/hear-the-words-of-athira-elsa-john-who-lives-in-isolation-for-around-2-years-70522

In 2018 when started with the medication for drug resistant tuberculosis since then I had not been outside other than taking hospital visits for the injections n monitoring of the sideffects frm the meds. And I am certain that there are many like me, isolated for years or months. Disoriented and confused by all the detachment frm everything. So these quarantine tips, writeups on how to kill time in isolation, or how sad physical distancing is, all this brimming on my timeline angers me. Coz,  there had been infectious illnesses and ppl suffering frm it, chronic illnesses and it's survivors talking abt this, all this dancing over ur head and only now when there's a deadly virus around ,and it's spread is quite alot visible, so all are like,awww I am sad and lonely I need to stay inside my home, doing nothing. But killer diseases like tuberculosis, drug resistant tuberculosis are swept under the carpet. Lives in isolation for years, deaths, none bats an eye.  Out of many stor

🖤28-06-2020💜 After some two months or so approx I would bore the person and the person leaves; thats my usual friendship pattern. But its been different with pavam Sneha and rebel who stay despite me being awkward and grumpy all the time.  Aswin D Rebel and Sneha Sn are the ones to whom I have taken out all of my emotions to and I am not sure how many times I have lashed out at them. After every angry scene I would check on their accounts to see whether I am blocked but they only send memes,  make stickers and act weird so its always super comfortable with these two. Yesterday they brought these beautiful flowers (actually saplings that I later planted) and a lovely cake !  At 12am my parents wished me with some cupcakes, my sister made a photowall for me and people whom I have huge respect for, whom I thought might not even know I even existed wished me love in such difficult times,  yesterday was good that I am taking printouts of these pictures, wishes, messages etc and saving it.

https://m.facebook.com/story.php?story_fbid=889428728204934&id=268114290336384

https://m.facebook.com/story.php?story_fbid=1568927623265557&id=100004450035233 Rishma Mariya Johnson ; Ichu, My sister,  had been stuck with me since my diagnosis which means she couldn't do things she love from 2018 especially, she wanted to do her masters degree, work with artists, do art, earn things, love, live and everything. My illness came with a lot of medicine sideffects, the slight one being tingling sensation under the feet, she would sit hours to put me into sleep by massaging my feet, would find new recipes and cook as she thought maybe new food will stop my projectile vomiting, many other instances and stories thats unexplainable in words!  In 2016 when we were doing our degree we had discussed about doing something together like an independent store or something anywhere possible, with books, plants, handmade art and everything, out of her excitement to see it happening she started a handmade crafts home store that time (which is nothing but turning our room int

From briefing it all, to detailing From detailing to getting into the nuances From there to opening up From openness to desperate need to be heard. To be listened, to be asked, to communicate, to connect To be enquired, like, u said so things went wrong, wats wrong? I am here. To be assured, to try knowing wats in one's head Wanting to be asked to keep talking, To never hear from the other side to stop talking To never ever come across exclusion To have a part, a role, some hope For the exhaustion to be understood To not be pushed to the stillness, to not be sunken Coz exhaustion is deep long breathing, A hole in the heart, heavy in the lungs, Not knowing where the body wants to go, Falling to the hollow depth From noise to silence From chaos to numbness From exhaustion to stillness.