Sunday, June 22, 2014

Twitter Heroes

Today was a bad day for me.  I've spent the last 3 weeks in the grip of a dysautonomia set-back, which for me means mostly, but not limited to: disabling vertigo, severe digestive upset, disabling fatigue, and a variety assortment of other unpleasant body rebellions.

Today is a clear and beautiful sunny day, and how am I spending it?  Doing the "usual" dysautonomia activity of laying in bed in a dark room.  Something I have gotten very good at over the past several years. Trying to read yet another book through a headache haze or watch another repeat of Law & Order, SVU.  Looking at my unvacuumed carpet and trying to muster up strength so I can get through a shower tonight. Trying to limit my multiple trips to the bathroom to be sick because getting there requires walking which increases the dizziness. Listening to people doing normal things outside that I can't do.

Just another regular day in dysautonomia land.

Most days I am not this depressed but I think when the physical stuff is really bad for a prolonged period of time, it wears me down.  There are days when I'm not this sick and it's easier to have a better outlook and even hope sometime that this hellish journey will actually end.  But it never does; it always comes back.  Sometimes a stressful event or other illness will set it off.  Sometimes, there is no reason at all; one day is OK and the next day is not. 

All this to say, I have been feeling really low lately from this latest lengthy bout and am worn out by it all.  And it is hard to find relief or help to get out of the low frame of mind that it causes. I call my mom once a week and it upsets her when I am very ill so I pretend I am doing OK when I talk with her.  I have a few friends who are still around but they don't understand entirely and it's not easy to call someone and say "I'm in the depths of despair because I have a chronic illness that will never end!"  How can anyone understand THIS?  And sometimes I can't bear the good intentioned remarks like "There's a reason for everything." or "You have to stay positive!"

So I go where I often go when it all seems hopeless: Twitter!  Yes, you read that right but I'll say it again:  TWITTER. 

When I started this blog and later a twitter account, I did it because the writing was therapeutic for me and because I hoped that sharing my experiences would let others know that they were not alone. What I did not expect is that I would find the most supportive and understanding group of people I have ever encountered in my life.  I went online to GIVE support and what I found is that people gave support to ME.  When I am very depressed and I post a tweet about it, almost always, somebody tweets support, hugs, friendship, and comfort.  And it is other people who are also chronically ill, who understand the despair and loneliness and utter weariness of the strength it takes to carry on.

What I also found was that there are so many people much worse off than me who are so uplifting and giving.  I found them to be inspiring and I found purpose in helping others who needed help.  When all you can do is lay around, it is hard to feel there is any purpose sometime.  But it does feel good to help someone when they need it.  And in return, I also learned...and am always humbled...when someone offers me support.

Is is weird to feel close to, and a sense of friendship and connection, with a group of people I have never met?  There was a time I suppose I would have thought so.  But as my physical world has changed and become much smaller, the virtual world...a world of real and wonderful people I would add...has become larger.

This blog posting is dedicated to all of my friends on twitter who lift me up when I am down and who give me purpose and strength.  Thank you all of you (and many of you know who you are!).  I would like to say that you have saved my life in a way; you save me when I am lonely or when I despair.  Today I was feeling sorry for myself and feeling depressed and hopeless.  But then I got online and although I am still really sick (and OK, yes still feeling sick of being sick!), I feel better emotionally and feel happier.  Thanks to you all; this one is for you. 

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