I’m only having two or three full body mega flare nights each week now…nights where the pain is out of control…nights where I lie on an electric blanket with a heated throw on top…nights where the pain is all consuming and there is little hope for sleep…nights where I breathe, and let my mind wander though my body can’t…and I wait.

painsomniaACWait for morning, or maybe an hour or two of peace, in that state between waking and sleep, when you’re not truly in either place. But you’re still aware.

I cry sometimes. But mostly I’m still. I debate whether to go over my oxycodone allowance. Not because it’s dangerous for me at this dose to take a little more. But because of dependence and tolerance and when do you push that envelope too far? There has to be a line you refuse to cross. There IS a line you can’t come back from.

So sometimes I take an extra dose and choose relief. And sometimes I hold firm at the line. And I wait for morning.

And I try to let my mind wander.  To escape my body, to think of something else rather than pain.  Distraction.  There is so little distraction at night.  But that’s not the only reason the pain is worse.

People often nod sagely and tell me ‘yes, of course it’s worse at night, because you have nothing else to focus on.

That’s a small part of it. But that’s not correct. The pain IS worse at night. It IS more intense.  It is sharper, deeper.  There is no distraction from it. Unless someone actually severed my arm or leg. That would distract me.  But it would need to be a ‘distraction’ on that level to drive the pain from my mind.

Nevertheless I try to let my mind roam free.  To not be shackled by the unpleasant sensations in my body.  Pain tends to drive away creativity.  But logic problems are different.  My brain can concentrate on logic, to an extent, when I’m in a lot of pain.

Logic cuts through. Focusses the brain.  Razor sharp, on a problem.  Pushes away the pain.

Creativity depends on being able to free associate, combine disparate concepts, merge old and new, reinvent.  And creativity relies on a certain amount of physical comfort, I have found.  Which is why on my high pain days when I was a web developer I didn’t do creative design work, but I did tackle coding problems.

Logic.  Logic helps.  Thinking through a problem, step by step.  Creating a solution.  An algorithm.  Black and white.

But I can’t get up and write code now. Even if I had a reason to.  I can’t even sit up, I can only lie flat on my back.  I have some logic games on my iPad, and I play those when the pain is bad, but not this bad.  My hands wouldn’t hold an iPad or even a phone right now.  Not without dropping it on my head.

Yes, laugh. I’ve done that many times.  Hands suddenly give way and SMACK suddenly you’re wearing your iPad in the middle of your nose. Ouch.  That’s pretty distracting.

And unfair. My nose is about the only thing that DOESN’T hurt right now…

I can hear a dog barking off in the distance.  It’s almost continuous.  He seems to have a pattern.  Lulls that come at set points.  Then he starts again. Then a closer dog joins in.  My dog is on my daughter’s bed. Sleeping with her.  It is NOT my dog barking tonight, or any night.  But my dog often gets the blame. She is a big, sappy German Shepherd Dog.  My neighbour is terrified of her, and wanted her destroyed.  Tried to have me charged with owning a dangerous animal, and have her put down.

My neighbour had no evidence, but she kept making complaints.  When the rangers came to check out the ‘dangerous’ dog they wound up laughing about how sooky my dog is. They threw her ball for her and accepted her kisses and hugs.  They told me not to worry, that no one was taking my dog away.  They declared my neighbour ‘vexatious’.

I took some satisfaction in that. But the trouble she caused!  The upset!  Not to her, of course. To me, and my children.

I think about my neighbour and wonder how she can live with herself. Trying to take away my dog, my children’s dog.  Because she has an anxiety disorder.  As I well know, having an illness does not give you a license to be an asshat.

I start to feel angry.  Doesn’t she have enough problems of her own?  Does she have to go looking for trouble?  She hurled abuse at me, and set her husband upon me. He threatened me with a shovel over the fence.  Nice.

But I have to stop being angry.  My mind has wandered somewhere it shouldn’t.  I will never understand why some people seem to go out of their way to cause drama.  Wait.  I am feeling sorry for myself. Stop!  Think something happy.

Unbidden, the face of the man I love appears.  Damn. Now I really will cry.  Something else. Fast.

My kids.  I remember when they were small.  How good those years were. I would go back to those years in a heartbeat.  I made the most of those years, appreciated every minute. I knew they were fleeting, in the course of a lifetime.  I have friends with small children who wish those years away.  They can’t wait for their kids to get older. They don’t understand how precious those moments are.

My kids are teenagers now, becoming more and more independent every day. As they should.  I wonder how much my illness has changed them.  I believe they are more empathic and often kinder than other kids their age.  They’ve learned the hard way that life isn’t fair.  They’ve missed out on lots of things. Physical things, toys I couldn’t afford, computers, fancy phones.  Holidays.  Experiences. But most of all, me being able to do things with them.  When my son was little he loved soccer. He still remembers the days when I could still play soccer with him.  He still talks about it sometimes.  Fondly.

Of course the upside of my illness is that I got to spend lots of time with my kids.  When I could no longer work, I was always at home for them.  Maybe I couldn’t physically do much, but often all kids need is time.  Your presence. Your attention.  I was able to give them that, in full.

We have become a tight threesome since my marriage ended.  My son is 14 and my daughter is 13.  At the moment they still talk to me about their lives. Still enjoy hanging out with me, seeing a movie, or watching DVDs on couch days.  As they get older that may change.  I encourage them to get out and live.  Chase their dreams.  Make the most of every moment. Live in the NOW. I hope they do.

If I’d known everything was going to fall apart when I was 36 I would have lived my life differently. I would have made different choices.  In hindsight I had mild RA for many years before I was diagnosed.  My aches and pains and fatigue were put down to hypothyroidism.  Now I’m pretty sure it was RA.  But mild RA is very hard to diagnose.  I can’t really blame anyone.  Except myself.  I chose to soldier on, just deal with it.  I didn’t want to keep complaining.   If I’d known what I was dealing with, I would have pushed the doctors harder.

But I didn’t know. And I made the best choices I could. And here I am.  Hurting.  Alone.  It’s not a great place to be.   I am feeling sad again.  Think of something else.

What time is it?  I don’t want to move.  Even to turn my head and grab my phone. My neck has been getting steadily worse.  My clock doesn’t work.  Must get another one. So I can count off the minutes on nights like this?  On second thoughts, I won’t bother.  It will only make the night longer.

I have a phone app that plays relaxing sounds.  It suddenly occurs to me to use it.  Finding my phone is hard.  Making my hands work is harder. I give up.  I try again.  I fiddle with the app and rain sounds start up.  Soothing.  Relaxing.  Something to focus my mind on.

Soon the sky will start to lighten and another night will be over.  I will have made it through, once again.  One more night done and dusted.

But I am still grateful, because these nights used to be every night. And now most nights the pain is controlled with narcotics, at least well enough to sleep. And that is a huge leap forward. In fact it’s like travelling back in time. Clawing back a few years…back to better days….nights.

That doesn’t mean that tonight doesn’t s*ck b*lls, to quote my eloquent teenage son. But no matter how bad it gets, I’m grateful that it’s not every night anymore.

And if that kind of improvement can happen for me, it can happen for anyone. It’s possible. I hope so, anyway.