A Letter to all my loved ones who are aware of my Chronic autoimmune disorder and the pain, fatigue and partial paralysis attached to it.
Chronic disorder such as myasthenia gravis and acute urticaria alongwith psychotic non-epileptic seizures... means many things change, and a lot of them are invisible...as is in my case too. Many who met me after my diagnosis have made comments like.."thank god u don't have cancer or have not been hurt in an accident", and so on, without even understanding even a little about chronic disorder and its effects.
In the pure spirit of informing those who wish to understand: These are the things that I would humbly request you to understand about me before you judging me.
> Yes I am sick but that no way means I'm not still a human being. I have to spend most of my day in considerable pain, exhaustion and intermittent paralysis... even so I still worry about work, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.
>When you get fever or cold, you probably feel miserable with it, but I've been sick for months now. But I can't be miserable all the time. In fact, I put in all efforts at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy...that's it. It no way means that I'm not experiencing pain or fatigue or that it has reduced my state of paralysis, which comes and goes at its own whims and fancy, or that I'm getting better, or any of those things. Many a times when my happy face or sound has been welcomed with comments like "Oh, you're sounding better!" or "But you look so healthy!" I am just coping. I am sounding happy and trying my best to normalise atleast some aspects of my life.
>There have been days when I have been able to stand up for ten minutes on my own without any support... that doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up or walk without support yesterday doesn't mean that I can do the same today. With Myasthenia gravis I am either paralyzed, or I can move... making my condition more confusing everyday. I am more like a yo-yo. I wake up with a sense of uncertainty as to how my body is going react on that day. I know it's hard to believe but my body has ditched me even from minute to minute expectation. That is one of the hardest and most frustrating components of my life now..since it has effected all my activities, be it sitting, walking, thinking, concentrating and so on, it applies to everything.
>As I said my condition keeps varying. Most often if I am able to walk till the washroom and back, the next day or maybe even after few hours I might have trouble getting to the next room. There is just no point saying "But you did it before!" or "Oh, come on, I know you can do this!" I just would like to remind you that you are able, and so you are very lucky, to be physically able to do all of the things that you can do.
>Often stretching myself to getting moving, excercising or doing things does not make me feel better, and can often make me seriously worse. I wish could explain what I have to go through or how I suffer in my own private time. Hearing that I need to exercise, or do some things to "get my mind off of it", often frustrate me to tears, and worsens my state. If I was capable of doing some things any or all of the time, trust me I would have. But my body fails me each time. Sometimes participating in a single activity for a short or a long period of time causes more damage and physical pain than you could ever imagine. And the recovery time goes intense and long. Its not always evident on my face or in my body language. All this further leads me to feeling depressed (wouldn't you get depressed and down if you were constantly in pain and exhausted for months togather).
I totally appreciate the thoughts and efforts of my loved ones and it's not that I don't want to get well. The Almighty knows that isn't true.
If I seem touchy, I sincerely hope I will be not be misunderstood. I have been, and am still, going through a lot. My ailment has wreaked a havoc on my body and my mind. My last six months have been exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability.
In many ways I depend on you, my family...my loved ones. I need you to visit me when I am too sick to go out.
You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know I will not succumb to all this and will overcome this phase with your love, support and blessings. And cant thank you enuf for standing beside me now...and all along. It really does mean a lot.
Lots of love
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