The truth about living with Rheumatoid Arthritis

#pain

What does chronic pain look like?

What does pain look like? Seriously. It’s effing obvious. It’s got nothing to do with how a person looks. Because you should have seen them an hour ago.

It’s a house that’s dirty. 

 

Its kids showing up at school in unwashed uniforms. Its kids who don’t have lunch. It’s a house with no food. Its kids not showing up to school at all. 

 

Its garbage over flowing. Its laundry, clean and dirty, everywhere. Its a garden that needs weeding. Its a garden that isn’t a garden. 

 

It’s a wheelchair in the corner. Its crutches and a walker and a walking stick and everything in between. 

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The Chicklet and her anxiety and my own head space

I am so unbelievably tired.  And I’m in more pain than usual, because I have taken my one pain pill for today.  And slow release is rubbish.

The Chicklet is not well. She has gastro and we all know that’s not fun.  A lot of us auto-immuners have gastro pretty constantly anyway, so I’m sure there’s a lot of empathy out there for her.

But here’s the thing. She works herself into a frenzy about gastro. She always has. For some reason she thinks she’s dying and has developed a deep anxiety about all things tummy ache!

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Pain scale charts and my daily number living with chronic pain

You know when you tell a doctor you’re in pain, and they ask you what pain number you are?  They usually ask you this question without any kind of terms of reference,or pain scale or guide.  Which renders the question utterly useless.  How can I give a number, if I don’t know what each number means to the doctor?  Because he or she is the one who is going to decide on my treatment based on that number, but I don’t know what that number will mean to them.

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Rheumatoid Arthritis and those nights where the pain is out of control

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.

Wait for morning, or maybe and 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.

But 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.

Rheumatoid Arthritis – is it pain or fatigue?

all medsI have to laugh at myself.  I have been lying here most of the morning.  Last night was an awful night.  I had to get up twice to take more pain killers.  Oxycodone, 10mg.  So I started today behind the eight ball.  Even for me.

Pain is moderate just sitting here. And climbs to severe if I actually try and use a joint.  Typing is hurting, but I need to DO something, so dear fingers, you WILL do my bidding!  And you wrists can just keep it together a little longer.

So back to laughing at myself.

I hurt. Fine. I’m used to that.  But today is a really bad fatigue day as well.  I don’t always suffer terrible fatigue.  But today I feel like my body is made of lead. My brain has been squished into a little corner of my head and the rest is full of some cottony substance.  My muscles hurt and I keep thinking of things I need to do…and then they are gone.  Whatever I should be doing right now is forever lost to the ether.

Wait! I need to buy drinking chocolate.  Best write that down.

Back to why I’m laughing at myself.  I CAN stay on topic. I CAN!!!

The fatigue.  So. Damn. Tired.

So I eat a healthy breakfast.  Bran cereal with some fruit.  Ok, stomach feels better. Settled.  Surely all that good nutrition will give me some energy.

Still tired.

Take some vitamin D.  Take some vitamin B6.  Magnesium.  Surely THOSE will make me feel a bit better?  Give me a lift?

Still. Tired.

Another hour of lying here and wondering what I should be doing.  My vision is blurring. Because I’m THAT tired?  Or is it actually my eyes failing in some way.  I should check when my ophthalmologist appointment is. It’s soon.  I know it’s soon.

But I’ll just lie here a little longer.

And have a coffee!  THAT will give me some energy.  Surely.  Strong. Black. Sweet. Coffee.  Caffeine and sugar.  That will give me the shot in the arm I need!

Snore.  Ooops.  I actually fell asleep for a while.

Ok. Take a pain killer.  It’s overdue.    I didn’t take my morning dose of oxycodone, because I took so much in the night.

I take a pain killer.  Fatigue starts to lift some.  I am sitting up now.  My head is clearing up.  I’m about to tackle that basket of washing that needs folding and putting away.  And I have done the dishes and cleaned up the kitchen.

It wasn’t really fatigue.  It was pain. It was pain that I am so used to feeling that I don’t even acknowledge it as pain anymore.  Oxycodone doesn’t treat fatigue. Opioids treat pain and can cause fatigue

But when I take opioid pain relief for my rheumatoid arthritis pain, the fatigue tends to lift.  Because for me, the fatigue is a function of pain.

I feel fatigue because my body is fighting so much pain. And it’s exhausting to be always fighting pain.  My brain can’t hold any thoughts because its busy blocking pain.

But I hate being dependent on oxycodone.  Hate it.  I know I need it, but I hate any sort of dependence.  And that is what is at the core of my bouts of depression. Being dependent.

Dependent on people. Dependent on drugs.  Especially dependent on opioids.

I have always been a very independent person.  I have always been the kind of person that helped others.  I always had the capacity to carry others with me.  I could always fill in the gaps. Because I had tonnes of energy and got 25 hours out of every day.

And now I’m the opposite of that.  And I have no one to carry me.

But I DO have my oxycodone.