Hypermobility Syndrome, AKA Joint Hypermobility Syndrome (JHS), Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT), Hypermobility Spectrum Disorders (HSD)

July 18, 2020

Feedback

Thank you for visiting my blog.

When I started this blog, I intended to create informative and awareness raising contents on this blog regularly, but my health and life events of the past years pushed that down the priority list.

I presently struggle with both speaking and typing, making input methods scarce for working on a blog. I have struggled with darkness like many people suffering from unending pain and desperation. I struggle with the urge to "put my affairs in order"... That includes wondering about whether to keep the blog or delete it. I used to be a perfectionist who would rather not do something if it could not done well. The only reason I have not deleted the blog is that I see that many visitors still come to this blog.

While you are here, I would be grateful if you could spend a couple of seconds to give me a quick feedback as to what brought you here and what did you find useful on this blog. Can you please fill out this quick anonymous survey and let me know if this blog is still useful or relevant?

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July 15, 2020

Provisional Existence in COVID-19 Times

I lapsed into some sort of a provisional existence when I became disabled, confined to the bed with bathroom trips being the wildest forays I could muster. I resigned from my job which was a very visible proclamation of illness, but I resigned invisibly from many other things too in my mind. Then followed a period of unrelenting, severe pain and disability that lasted a good many years (after which there were ups and downs, even worse downs, but some ups too). During this first episode of imprisonment, I lost time, I lost memories, I lost track of life in general. Days blurred into weeks and months, and there was no respite, no change, no distinction. At the same time, each second of excruciating pain seemed to last an eternity, and the next second took forever to come, and I begged in my mind for the day to end so that I could die - even if for a few hours. And morning brought that same agony, waking up to pain, disability, helplessness and the despair that there are at least 18 hours ahead to be endured today before I can die again.
“The Latin word finis has two meanings: the end or the finish, and a goal to reach. A man who could not see the end of his "provisional existence" was not able to aim at an ultimate goal in life. He ceased living for the future, in contrast to a man in normal life. Therefore the whole structure of his inner life changed; signs of decay set in which we know from other areas of life. The unemployed worker, for example, is in a similar position. His existence has become provisional and in a certain sense he cannot live for the future or aim at a goal. Research work done on unemployed miners has shown that they suffer from a peculiar sort of deformed time-inner time - which is a result of their unemployed state. Prisoners, too, suffered from this strange "time-experience." In camp*, a small time unit, a day, for example, filled with hourly tortures and fatigue, appeared endless. A larger time unit, perhaps a week, seemed to pass very quickly. My comrades agreed when I said that in a camp a day lasted longer than a week.”
Viktor E. Frankl, Man's Search for Meaning
*For those who have not read the book, the camp here is a Nazi concentration camp.

As people started getting anxious and disoriented in April 2020, few weeks into the lockdown, many disabled people agreed with me that life became this way for each one of us when we lost our normally-abled lives and lost the body's permission and support to do a number of things including go out when we want, where we want, for however long we want. Or go out at all.

When I had read Man's Search for Meaning, I had immediately identified with this provisional existence. Perhaps, it was this sort of time-disorientation that people felt now with the lockdown? I do not know for sure. For me, COVID-19 is a sad time because of all the heart-breaking events in the world, and the unprecedented carnage that is still going on, not just in the untimely extinguishing of lives but also the destruction of lives of people still living, in multiple facets. But the lockdown, the abrupt cessation of normal hectic life, the decrease in social obligations and events, the closure of schools and offices, has led to a sort of a suspended life state, that has also been a very healing and rewarding time on a personal level. The world slowed down, the world's expectations from me were lowered, and I no longer needed to work on 300 - 500 % of my capacity. It is still more than I can do comfortably, but even this slight amount of respite has been very helpful, physically and mentally.




March 11, 2018

Chronic Pain India - A new initiative

There is a new initiative by chronic pain warriors in India which is an ambitious project to build a community of support and a platform for awareness and advocacy for people suffering from chronic pain  and invisible illnesses in India.

March 10, 2018

Where do missing zebras go?


After I got my diagnosis, I researched online about hypermobility disorders and a good deal of useful information I found was on the blogs of fellow zebras. As you read someone's blog, sometimes from years ago, and follow their story - how they were diagnosed and their journey afterwards, you get entwined with the journey at some level. You hope the best for them, you root for them. You cry for the pain they faced and find support in their trials and tribulations. You understand their views and value their insights. And then the blog ends suddenly. The last post was some years or some months ago.