Midnight. I hate this time as I know it’s the start. This is how it begins.

3:30am
It’s been about an hour since I finally fell asleep but I am awake again. I check my phone and it confirms what I knew to be true. It’s 3:30 and I am awake. Again.

I pull the heat packs closer, put drops in my eyes, take another drink of water and wait. Wait until I am so tired I will fall asleep again.

4:00 I have to pee. Oh god. Please no. Can I hold it? No. I fold myself out of the covers with my hands. I turn on the light. Husband is snoring in blissful ignorance. Should I wake him? No. I will try. First hot and broken foot reaches the floor. Cold pain against warm pain. I grab hold of furniture. I can’t do it my hip cracks loud enough to wake the dog. He turns over, used to it. My right foot not working either. I can’t escape but ask for help now. Help comes and my husband and I do this sad shuffle. Like drunken sailors on a rocking boat. Silent tears run down my cheeks. Toilet paper will  wipe them. I sit there tired and straining. I don’t want to get up and do it all again.  I have crawled to the toilet before. It still hurts but at least I can do that on my own.  The return trip back to bed has become unspoken agony and it’s lights out again. I feel liken I have been mugged and left beaten in an ally. Alleys. I remember working in the city and walking down so many alleyways. So lovely then.  So lovely and mysterious but that was when I could walk. That was a lifetime ago. I can’t go there. Can’t let myself relive and remember it only makes me cry again and doctors will have more BS to say about being depressed.  How would they feel???? I wonder if the doctors would go through this and be worried about why it can’t be cured or would they tell themselves “oh I am just depressed…?” I laughed at the thought of a world of doctors sitting in bed and rigged up to tubes and having chemo and drugs pumped into them like poor sick animals. I don’t think they would like it!

4:30. Still no sleep but I have changed positions nearly a hundred times to try and bring relief to every joint that screams. I can’t remember when they didn’t. I am so tired that my eyes burn for sleep. There must be some stray cat outside and I hear it calling. I wish I liked the nights like stray cats do. I wish I was a nocturnal animal that lived full and beautifully in the dark. Perhaps in another life I can be one, since I have become so used to not sleeping in this life.

5:00 I might as well read. Check Facebook. Look at something. Distract myself. Write all this down and show the world what life is really like. My ribs, hands, feet and legs hurt so much. Why? Why can’t it stop? When will it stop? Doctors have been flushing my body with Meds for years but it hasn’t stopped. Will it ever? I am tired of hopping.

5:14 I find a positivity picture on Pinterest about how to dance in the storms of life. Dancing! I wish I could. I loved dancing. I love how these people write metaphors about situations they will know nothing about. It’s their naivety that I fear the most. Almost all the world bathes in a glorious glow of ignorance that no longer shines for me. I guess it no longer shines for people like me everywhere. The world calls us sleep deprived, depressed, Chronic… all these words which simply show me that they know nothing of the realities of life that many of us know. But even now, after decades of their judgements and ‘helpful’ suggestions I don’t hate them. I envy their naive lives like a veteran looks at the innocence of a child. A child untouched by the horrors and realities of battle. I look at the world this way now and I don’t even speak to them about it. They don’t want to know; no they CANT know. And I don’t want to talk to them about it. The only ones that I even try to talk to about it are those that have seen the battle field, and even we don’t want to relive it. Sad but true.

5:20 the cat visits my legs and starts the make itself comfortable on them. In a way I find it surprising that they give something comfort.

6:00. I think I might have slept for about 15 minutes. Will this be enough? It has to be, right?!

6:15 the sun is dawning. People talk about the beauty of sunrise. I hate it as it signals that once again I have lost another night. Another chance to ever recharge. It’s like a flare going off to tell me that my battle with the day begins again fighting pain and tiredness. The type that makes you want to throw up from over tiredness. I can remember being told by every doctor I ever met these past 15 years to ” get some sleep” … It seems like so much jargon. Like how politicians sound at election time.

7:00 I guess it’s safe to take more pain Meds now. I resisted for so long as I haven’t wanted to need then more and more. I suspect they aren’t working anyway.

In an hour I hope they will take the edge off enough to be able to put my foot on the floor without feeling like throwing up.

8:00 I am too tired so I lay in bed and do closed eye resting. Not sleeping. Like a corpse. I will have to shower soon. I hate showering.  I hate the chair in the shower. I hate the painful totture they call showering. I have a vision of a nursing home wherever I look. Fro the hand rails. To the walking frame. To the shower chair. To the Meds beside the table. Only… I was 38. I was young. I was horrified. I was scared. I was lost and so so frightened about was to become of me. I still am  I will be 45 soon.

I am told by my phone that today is Wednesday. More meaningless to me. Days are meaningless countdowns. Special to regular people who have jobs, children, holidays and parties to go to. Meaningless to me and only signify what day I need which medicine.  It will be two days until I have the next transfusion. Another desperate hope to reduce pain. Another drug to get used to.

I check Facebook and email. This is how I interact with people now. This is how I see the world outside. This is how it sees me.

– I am Autoimmunitygirl.