Today I had a slow start, but I thought things were better.
I didn’t hit the shower until 10am. I didn’t get in the car until 1pm. The rest of the time I was on the couch.
I drove out to pick up my daughter’s friend and brought her back to our house for a sleepover. 25 minute drive. On the way back I stopped at the grocery store, and picked up about 20 items. Mostly stuff for dinner, and some junk food for them while they watch movies all night.
Long before I hit the checkout the pain hit hard. It was interesting watching my daughter’s friend watch me. I haven’t met her before. She seems a like a really good kid. Nice girl. Polite, kind and smart. She helped me load the car, and she was respectful. She understood that I would not be taking them to the swimming pool. She didn’t complain.
I loved that I didn’t have to ask her to help me load the groceries from the trolley to the car, and the car to the house. She just did it. I’m not sure my kids would do that. I hope they would.
And then I crashed. Back to the couch.
I hate the couch now. Hate it.
I didn’t do much today. A normal person wouldn’t even consider it doing anything.
I should say that a friend txted me and offered to get some groceries for me. Beautiful lady. I bet if I’d asked her to get 20 things, she would have. But I really wanted to get them myself. I really thought I could. And she went to the store for me last week. I don’t want to wear out my welcome.
But now I am back in full body mega flare. I’m not sure people even know what that means. I saw someone on fb (not on my page, but a friend) saying they were in full body mega flare cos both their shoulders were hurting. At the same time. Seriously. I don’t think she knows what a full body mega flare is.
But you can’t control how people use your words. Words take on a life of their own. And people can so easily change their meaning by adopting them and making them their own. It’s both the beauty and the beast in writing.
Just for the record this post describes a full body mega flare. I wrote it almost five years ago. That’s a long time to be going through these things.
So I spent the afternoon on the couch. A friend txted me and asked if I was up for a drink. I said great, I’d really love a glass of red and I have some in the cupboard, but I can’t leave the house.
She said she couldn’t come to me. She said she always comes to me lately. Which is pretty much true. But let’s be honest, she only comes when she has a reason. A need.
I apologised. I can’t drive myself anywhere. She only lives about 1km away. Literally. I can’t walk that far. I can’t walk to my kitchen, let alone hers.
I can’t use sticks, because my wrists, elbows and shoulders can’t bear my weight any better than my hips, knees, and ankles can.
I can’t get there to have a glass of wine, though some company and a laugh is pretty much exactly what I need. If you’re sensing some depression, perhaps you’re right. Though it’s probably more the ‘thud’ of a reality check hitting me in the guts.
She won’t come to me. She is making a point. As many people have done before her. I do get that its tedious always having to come to me. But there are times when I wish I had the ability to allow people to feel what I am feeling. Just for a few moments.
I know it would change their lives. I know it would change the way they treat me.
She is making a point. Fine. But the real point is, the fact that she feels she needs to make a point tells me that she has no understanding for how sick I am right now. She called me ‘lucky’ last week. I have to write about that too. Because that burned. It really did.
I need help, but there is none. I am struggling to keep my head above water. I am not dying, but I am not living either. I miss the gym. I miss being able to walk to the bathroom.
The horrible sick thing has moved on. But it has left vicious, untethered RA in its place. At first it felt better. Comforting, even. I know this. I am used to this. I just have to ride it out.
But it’s not going away. And if I push too hard, the headache, the dizzy, the nausea, the exhaustion, the fever, all come roaring back.
But I hate the couch. I just can’t lie here anymore.
But I can’t get up either.
And there’s one more thing. I hardly dare to acknowledge it. It’s a tiny, but intense ball of anxiety. My mind flits there and I quickly force it away. But the thought is there. It has been planted. I am aware. The most terrifying thought, that I’m willing to bet that everyone who suffers severe RA thinks sometimes.
What if this flare doesn’t end?