The truth about Mother’s Day with Rheumatoid Arthritis

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This year wasn’t great.

I spent the morning at my mother’s house, celebrating with her.  That’s normal and that’s good. That’s what families do.  But those two hours were my only two hours today.

People WILL NOT understand that.

They can go have breakfast with their mother and then go spend the rest of the day doing what they want.  Enjoying their Mother’s Day. Being pampered by their own family.

Not me.

I only had two decent hours today. And I spent them on my Mum.

There was nothing left for me.

Why?  Because yesterday I did too much.

Why? Because I had an attack of the guilts.  For the last few years my sister has taken the load, she has organised the present, she has done the work. I have shown up with cake or food of some sort. Because I can cook. And I can cook ahead.

For some reason this year I got a major guilt attack.  My sister didn’t precipitate it.

I did.

I felt guilty.

Guilty for all the things I can’t do. I don’t do. I will never be able to do again.

So yesterday I spent the day driving to a town half an hour away, to a lolly shop, to get my mother’s favourite licorice, which, as it turns out, they didn’t have anyway.

I was a nice day.  I got to spend a couple of quality hours with my kids. Just hanging out, and talking. THAT part was great. I am reminding myself of that. I am telling myself that YESTERDAY was mother’s day.  YESTERDAY I had two hours, just talking to my kids. And having them talk to me.  Those are the hours that really matter.

But after the  30 minute drive out there, and walking around the town, and then the 30 minute drive home, I had to stop at the shops to grab some slippers and fluffy socks. And a card. And some flowers.

Simple.

But not for me, because a 30 minute drive twice is enough to exhaust me.  And I still had to do more.

And I was STUPID because I didn’t HAVE to do it. My sister had planned to do it, and I told her , NO, this year I am taking care of it.

I should have let her do it. She would NOT have minded.

But the guilt!

And then the realisation that I am physically not able to manage such simple things.  Things that normal people just don’t even think about.

That the list of what I am capable of has shrunk so radically in the last 12 months.  That I have no stamina. That I am always exhausted.  That the fatigue is unbearable. But I push through it, because I can. But it’s a VERY BAD IDEA.

I pay.

I pay big time.

Because I can’t accept that I can’t do this stuff. I can’t accept myself the way I am.  I can’t believe that there are people that don’t mind picking up the slack – my sister.

Because when I got sick almost 10 years ago, my life was full of people NOT picking up the slack. People terrified that they would have to look after me.  That they would be STUCK with me.  People who ridiculed me and disbelieved me.  All to cover their fear.  Because they all used me as a shoulder to cry on, someone to help out with their kids, someone to support them.  But they didn’t want ot have to return any of that.  They didn’t want to get stuck.  So they had to deny that I was really sick.  So they could run away. Abandon me.  Leave me to cope.

The very closest people to me.   The very closest people to me in the world. Left.

They left.

All of them.  Or they ignored me.

And there are moments where the pain of that is unbearable.  Far worse than the physical pain. And somehow I feel guilty because I was surrounded by terrible people who didn’t love me enough to tell me it was all going to be alright. They didn’t love me enough to reassure me. They didn’t love me enough to make me feel safe, and cared for.  They didn’t love me enough to learn about Autoimmune diseases, or RA or Lupus or any of the number of diseases that were on the table.  They didn’t come to doctors appointments. They didn’t learn about the treatments, the medications. They didn’t learn about the prognosis.

They left.

Friends, family, my husband.

Gone.

So every now and again I panic. I MUST pick up the slack. I feel this sense of that if I don’t do this thing, another person will leave me.

It’s bullshit. My sister is my sister.  She didn’t give a toss.

But I did.

So, even when I knew a flare was coming, I pushed myself to do such a simple thing.

And this morning when I got up, I knew that I was going to pain killer up and push myself to get through breakfast with my mother and sister and family.

And I knew that would be my entire day. The only good hours I would have today would be spent there.  I knew it.  And I resented it. I was angry.

It’s not fair.

I came home at midday.  I topped up the 10mg of immediate release  and the 10mg slow release oxycodone I took at 7am, with another 10mg. And then an hour later, another 10mg.  Because it wasn’t touching the pain.  And then I poured myself some wine.  To help the effects along a little.

Because the pain was EVERYWHERE. It is always in most of my joints now.

It’s not one shoulder. It’s not one knee. It’s not a pair of wrists.  It’s hands, feet, knees, hips, lower back, shoulders, elbows.  Always.  But its not always severe. But today it was severe, everywhere.

Full body mega flare.

When I got home I had to lie down. I had bought groceries. They are still in bags on the floor in the kitchen.  They are still there right now.

I couldn’t eat anything. I could barely get my pain meds down, because my throat spasmed shut.

That. Hurts.  When your throat spasms.  And you waste pain pills because you choke on them and throw them back up.

But I had to get the pain meds down.  It’s crazy not being able to swallow water.  But I got them down in the end.

I had a stomach ache all afternoon from eating breakfast.  I didn’t eat much. But it wasn’t my usual bland stuff.  It was a ‘treat’ breakfast.  Or it should have been.

My stomach couldn’t take it.  I couldn’t eat anything else.

I lay on the couch all afternoon.

That was it.

Now it’s 8:30pm and my kids are having showers. I made them a simple dinner of canned soup.  They have spent the day on computers, with their friends, online.

I just wanted to go out somewhere and take some photographs.  Go somewhere pretty, and take some photos of my kids. They are growing up so fast now. I looked at a picture of my son that was taken only six months ago. Puberty is changing him fast. The baby face is all gone. He is all young man now, not much boy left.

But I couldn’t do anything. I had to lie down on the couch. All day. Alone.

The pain is ramping up again now, and it’s going to be a long night. This is not pessimism. This is experience.  I’m going to take a lot of meds tonight.

I have a gastroenterologist on Tuesday. And I have an MRI on Saturday.  Hardly things to look forward to. In fact I am hating doctors and all things medical right now. Psychologically I am just rejecting everything that is happening.  I refuse to believe it.  I refuse to accept it.

Physically though, today I couldn’t get off the couch.  Can’t argue with that.

And that’s the truth about Mother’s Day 2015.

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