Wednesday, July 21, 2010

The Crash.

Suddenly it's Wednesday. 

I got my wish. 

3 days last week I felt pretty okay, meaning I could do some things, like go out to the balcony, and open the door myself. It was glorious. I wrote that I looked alive.

This week is the crash. 

Saturday I reluctantly tried for sleep at 5 am.  By Monday, I had about 4-5 hours of sleep in the past 48. The crash is not unexpected but the intensity is.

Let me explain. On 'good' days, I can do a little bit more and I celebrate each like a victory. I still can't do much, pain is high, and I might be happy but that in no way does mean I feel normal. Not that I recall what that is like. My good days still mean I am bedridden. I spent Saturday and Sunday nights doing something I love, which is the podcasts - one I cohost and one I am an invited guest.

Monday, I fell. Not to the ground this time, but I was too ambitious, first time since I've been back I tried to use the toaster. I fell, into the counter and bounced back into the stove. I didn't cry right away, but it was a shock. Pain shot through me, ribs shifted, and my legs just gave out. I feel like a failure again.

The blackness takes over with no warning, and pushes me around. I can almost hear it taunting me, laughing.

The 'twitchies' are fairly new, and they are rather disgusting. I have no control, and it hurts. I'm just a glass little thing, and it keeps shattering me. I can't sleep. I lie awake, helpless. I've been in tears for days. Each twitch takes my breath away, and I cry a little bit harder. 

How in the hell do I of all people have no control of my body, it's what I am supposed to do. I twitch, I shatter, I cry.

Nothing but a silhouette of a dancer. 

I willed it to be Wednesday - I willed myself to sleep the days away, which I didn't do completely. 

Why Wednesday? I wanted two days of it to attack without my feeling it. I felt it all. But I did it. I made it. Somehow, I keep making it. Despite this hell, something keeps me holding on. The love and support far outweighs,  and it is that that I cannot thank you enough for. I am holding on.

I will watch my dance show tonight, and for a little while I will feel like that ballerina, even though a frozen in time one. 

I don't like to live in the past, but live in the now, and the near future. 

I'll just be one step behind you.




  1. Rhian, the place I will try to be is right by your side and ready to share a dance with your heart, one step at a time.

  2. I fell the other day too :(

    Definitely doesn't do anything for our already fragile self-esteem.

    I'm sending you lots of love! <3

  3. I like to look at my past as a glorious reminder of what I've accomplished instead of what I've lost.

    I may not be able to do the same things I used to but I find pleasure in discovering NEW things that I'm learning to love. There is a world of possibilities, Lupus does not have to hold you back my love.

    Things may have changed, but change can sometimes be good. I want you to try something completely new, you have til next week! & of course tell me all about it! Ready? Set? GO!

  4. You are not a failure. You are anything but. You are an amazingly strong person who is going through more then I can even imagine. You amaze me everyday. You keep holding on, which to be honest with you, is not something I'm sure that I could do. But you do it, and you do it with grace. I admire you for that very reason.

    Lots of love and hugs being sent to you!