Rheumatoid arthritis, painsomnia and at 5am I give up

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I got through phases of insomnia and painsomia.  It starts with pain.  But sometimes even when I can turn down the pain with an extra dose of oxycodone, insomnia has kicked in.  It’s usually hormonally related, mid cycle and PMS time.  But once you’ve gotten into the 3am cycle, it becomes a habit. And it can go on for weeks.

So I take the extra oxycodone. I take Valium to sleep before bed.  It usually only gives me four hours though.  And at 5am I give up.  And I get up.

Getting up and feeling the knives shoot through my body sux, but after I walk around for a while, the pain improves. I make a cup of tea and I turn the TV on low, so as not to wake the kids.

I tend to just watch whatever is on, or glance at it from time to time. I’ve discovered a pool of actors who pop up time and time again.  Guesting or recurring roles on multiple series. Familiar faces, good actors who’ll never be big stars.

I wonder what that’s like.  Surely it wasn’t the dream, the dream was stardom.  But they probably live very well, have a very high net worth and a great lifestyle.  With none of the downsides of fame, paparazzi, loss of privacy, living in a bubble.  Looks like the better gig to me to tell the truth.

Plus, they get to work. A lot.  Working is important, it gives life meaning and purpose.  And if you’re doing what you love, that’s the best situation you can hope for.  Add on a very comfortable income, and all the trappings that go along with that, and who wants to be a super star anyway?  I’d choose to be the recurring role, constantly working actor.  Definitely.

And these are the random thoughts that keep me awake.  Because it’s not until I get up that I realise how very, very tired I am. Especially on night five of averaging 5 hours 13 minutes sleep.  Thank you fit bit.  My S-health app on my Gear S2 disagrees.   It is far more generous, but I fear less accurate, in telling me I’ve actually slept 5 hours and 42 minutes on average.  Still not enough.

I’m wearing both because I bought the Gear S2 about a month ago.  I have been coveting it for about a year.  I finally decided to splurge.  My fitbit is beloved, but I wanted something prettier, and the gear S2 was rated the best smart watch for fitness. What I really wanted was a quality fitness tracker wrapped up in a much prettier package.  And that’s what I got.  But since I’ve had both, I’ve been comparing them, and noting the differences.  Just in case your live is as boring as mine, here they are.

The fitbit is better at realising I’m awake or restless.  The Gear things I’m still asleep.  The fitbit measures many hundred more steps most days, I guess that’s a calibration thing.  The Gear is far more generous in however it calculates my calories burned during a workout though.  On the light workouts, ten minutes on the recumbent or the treads, it’s pretty similar.  But a few weeks ago when I had more prednisone in the system and I did a half hour cardio class, there was an almost 500 calorie difference in how many calories I burned in one workout.  That’s a bit huge and I think the Gear was in the wrong there.  Truth is, now that I’m barely able to exercise, I only check either one twice or three times a week.  I’m attached to the fitbit tho.  I have no idea why.  Habit. Just a little OCD.

Fascinating, right?  That’s how the early mornings pass at my house.

I am so tired.

It’s nearly 6am now and I can take my morning meds. Take them too early and I’ll be playing too much catchup all day.  Depending on the day, my pain meds doses run out anywhere between 11am and 2pm.  If I take them at 5am, it’ll more likely be 11am. Or even sooner, and I’ll be spacing them over the day.  But 6am is Ok I guess. Have to keep the pain under control, if I let it get too bad, then the whole day will be a write off anyway.  If I head it off now, I can keep it there, under oxycodone’s thumb.

Did I mention how tired I am?  Kids will be up soon. I always get up with them. I make sure they DO get up, and have my coffee and talk to them while they’re getting ready, and having their breakfast. Or I am nagging them to have some breakfast.  Anything.

Until they get on the bus, last one at 8am. And then the day spreads ahead of me.  At the beginning of the week I only had one appointment. That quickly turned to two appointments when the radiologist refused to do both my s3/s4 joints and Si joints bilaterally at the same time.  All the doctors have different policies on this. Luck of the draw.

Then I realised I was running low on pain meds, so doctor appointment.  Then a pathology appointment.  And my psychologist appointment, which I had forgotten.

So it turned into a five appointment week.  And its Thursday morning.  Sick of medical appointments. They never stop.  And they wipe me out.  I can do one thing most days. Some days I can’t even do one. But a trip to the doc means an hour of prep, travel, the waiting room, the appointment, maybe a pharmacy trip after that, travel home.  And that means wipe-out and recovery for a few hours.  Sometimes that’s my whole day.

Today I have nothing I need to do, except drop off a sample to the pathology lab.  My daughter’s results. She’s still unwell.

But I want to do something constructive today. Something that’s important to me, not the never ending medical appointments.  I want to write.  I want to get my Etsy store up.  I want to clean up around here.  I want to to have a choice about what I do with my four upright hours today (if I’m lucky).

I have a new cleaner coming on Friday and I want to be very clear with her what I want her to do.  I’m hoping that there IS a cleaner in the world who is willing to follow direction.  Apparently it’s very hard to clean what you’ve been asked to clean, and leave things alone if you’ve been asked to leave them alone.

It’s great having clean basins and the floor mopped, but the last cleaner wasn’t worth it. She was lazy, left early when she thought I was asleep, messed with things I told her to leave alone, refused to clean my toilets and used up all my cleaning products in four weeks.  Products that would last me several months.  Expensive adventure.  I can’t imagine what she did with them, especially the toilet cleaner.  She clearly did not clean the toilets.  And 2 litres of bleach? Really?

Not enjoying the ‘cleaner’ thing.  I can clean the basins in 15 minutes. Mopping the floor is harder, but dirty floors are preferably to having that person ripping me off and touching things she shouldn’t.

Help is really hard to come by.  Some of it isn’t worth it anyway.

Time for another cup of tea.  Ten minutes til my daughter gets up. My eyes want to close, but I’m committed to being awake now.

Maybe tonight I’ll sleep.

Post blog:  The Chicklet has gastro and pain. Told her to get ready anyway, can’t miss any more school.  Gamerboy has a massive headache.   I’ve been expecting this, because his stress levels are rising again.  Two Panadol and back to bed for an hour. If that works he’ll still make the bus.

Postblog2: The Chicklet is throwing up. She’s going back to bed.  No fever, just sick.  I’m unsure if she’s faking the throwup. She knows she has to up the ante, I told her no more time off school.  I know that she had gastro last night, let’s just say that pathology sample proves it.  Despite all her bloods being perfect, there is something going on.  Back to bed for an hour, maybe two.  I might be able to get her to school by second period.  Or third. Did that last week.  No point taking her to the doctor, nothing to do until the pathology results are back.  The shape of my day is rapidly changing. Again.

Postblog3:  It’s 7:30am and that last opportunity to get up and make the bus at 8am.  Gamerboy is under his blankets in an attempt to make the world as dark as possible. He is in tears.  He gets migraines, looks like this is one.

2 COMMENTS

  1. Hey there – just stopped by to see how you were holding up. I’ve mentioned before, fellow RA sufferer here, with AS, migraines, and some lesser miseries to boot.

    I get into trouble sleeping, too – pain keeps me up, pain medication makes me WIDE awake, so there’s no good solution there. I find that odd things help me sleep – I take benadryl if I don’t mind being groggy the next day, xanax (though sparingly) if I think it’ll work. I use really incredibly soft blankets against my skin. They calm me and provide some non-nasty feedback for my nerves. Ice helps A LOT if you have nerves that get bad, as opposed to joint swelling. I know sometimes heat feels good on swollen joints, but I was really surprised at how much cold could do for me. Just anything you can do to be gentle to yourself, take care of yourself, helps.

    I hope it gets better. No sleep is the worst, it makes the pain and other issues seem so much bigger. Hang in there.

  2. Hi Raenne, thanks for the tips. I’m going to try ice tonight. I usually use heat, but I will try the opposite, see how it goes. Thank you. It’s really not fair that pain meds wake you up! They still tend to make me a little drowsy. You’re right about sleep, everything spirals down when you’re not sleeping. I’m flaring worse today, and I know its because the lack of sleep is stacking up to breaking point.

    I hope you’re doing Ok, and getting a little sleep in there somewhere too. Best to you and thanks for commenting…really helps 🙂

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