Day two of the prednisone burst

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So its 8am and I haven’t taken any endone nor targin.

I don’t need it.  First day in a long time.  I’m in pain, but it’s dull.  It’s not knives.  For the last week I’ve been waking up with knives everywhere.  Not today.   I am tired, and I feel brain foggy. But it’s not overwhelming fatigue.

Prednisone is an amazing drug for me.  I’m far from pain free, but its manageable pain.  We’ll see what happens to that pain when I try to get my daughter to her psychologist appointment this morning.  If I get back from that without pain levels soaring, it’s going to be a great day.

But.  This is the part where I look around me and see everything that needs to be done. Everything that hasn’t been done for the last week.

In a knock down mega flare, I’m just surviving. I do the essentials.  I feed the kids and make their lunches for school.  I make sure their school uniforms are clean.  I take the garbage out so that the house doesn’t reek.  I go to the shops for milk but it’s damn near impossible so I don’t do big shops.  We just eat whatever is in the cupboards.  I’m just surviving.

But now I see how dirty the carpets are.  How much crap has piled up on tables.  I remember all the homework assignments that my kids have.  I see how filthy the bathroom basins are, not to mention the toilets.  There are three baskets of washing that need folding and ironing, instead of just ruffling through there every morning for clean underwear.  There are bills that need paying.  Appointments that need making…paediatrician, dentist, haircuts.  My daughter needs a winter school uniform.  My son needs track pants. These were supposed to be bought on the weekend just gone, but I was incapacitated.  I have received many kind messages, and I haven’t responded.  I feel bad about that.

There’s more…but you get the picture. It’s time to catch up.  I hate living like this. Like most people, I like my house clean and tidy.  Not showroom quality, but tidy.  Not dirty.  I want to jump up and fix everything, but that’s impossible.  If I didn’t have rheumatoid if I were a normal person, it would take 2 or 3 hours to straighten everything up.  It will take me much longer.  I’ll have to pick two things and tackle those. It’s a start.  Best make sure the bills are paid.  Good place to start.

It’s kinda sad that the best sign that I am feeling better is that I’m noticing all the work that has stacked up, and it’s stressing me.  There is no one else to pick up the slack. It all just waits until I am better again.  So now I have to play catchup.

But now it’s 11am and its post appointment and I need pain killers. And I need rest. I always over estimate how much better I am doing.  I try to jump up and be ‘normal’.  Not quite yet.  Its couch time again.  I am on the upswing of the cycle though.  I want to get back to life.  My body remains quite broken, but my head is coming back together.

The problem with being an optimist is that I take a little improvement and think it’s more than it is.  So I’ll rest. This is just the constant cycle that is my life.  I’m writing it all down, because its stuff that people don’t know.  How it works.  When you’re dependent on prednisone for your mobility, but you can’t stay on the prednisone. The constant torture of starting another drug and hoping it works well enough for you to finally get off the prednisone AND keep moving.  It’s a cycle that can take anywhere from 6 weeks to 4 months to play out. But it’s the same thing, over and over.  Its a cycle I so desperately wish I could break.  I just wish that I could stay on prednisone forever.  It has side effects, sure. Some of them are unpleasant, sure.  But compared to life on the couch in severe pain, the side effects are worth it.

Except for the threat of blindness.  Opthamologist in a month.  I have to get someone to drive me to that one too.  I used to be low maintenance. I used to be able to take care of everything.  I guess I can’t really say that in all honesty anymore.  But it’s not because I choose to be difficult.  And I still say anyone who had loved me, would have wanted to take care of me.  I’d rather be on my own and managing, even if it is just barely sometimes, than be the reason for someone else’s misery.

But prednisone is definately having an effect.  I have energy. I have anxiety.  It’s mild – nothing compared to Humira-head.  I’m not a jibbering mess.  I just have that nervous feeling in my chest. On edge.  I know what it is.  I can manage it.  It’s mild.

Oh but I have an appetite again!  This is a good thing.  Food is important, eating well helps recovery. But its hard to eat when you have no appetite, so what is often considered an unpleasant side effect of prednisone is actually good for me right now.

I’m also sweating like a pig and I’m just sitting here.  And last night I didn’t sleep much.  I guess there will be more predsomnia on the way. But it beats painsomnia any day.

The cycle continues.

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