7am alarm. Lie here. Must move. Don’t want to. I was awake at 3am, 5am and 6am. Now its time to get up. Stand up, world spins. Sit back down for a minute. OK. Try that again. Rise slowly. Sharp pains in my ankles, knees, hips, lower back, wrists, shoulders and neck. Less than usual. It’s a good day.
Hobble to the kitchen. Pain meds are on the bench. Water is next to them. Take pain meds. Take other RA meds. Hobble to kids rooms. Wait. My son is on school holidays. First day today. Let him sleep. Wake my daughter. Hobble to couch. Lie down and wait for meds to kick in.
7:30am. Make my daughter’s lunch for school. Back to couch. Wait some more.
8am. Daughter has gotten herself ready and on the bus. Yay for teenagers. All is quiet. Son is still in bed. I need to do last night’s dinner dishes. The kitchen is a disgusting orgy of dirty dishes and old food smells. It has to wait. Pain meds have kicked in some, but not enough. Should I take more?
9am. Still lying here. Son is still sleeping. Today is going to be a better day. I need to take advantage of it. I have been mostly bedridden for weeks now. Move!
9:30am. Still here. Must. Shower.
10am. Showered. Now I need to rest. There is so much washing in baskets. Everywhere I look. Washing. In baskets. Clean. Needs to be folded and put away. We’ve all just been pulling clean things out of baskets for weeks. The closets are empty, but the baskets are full.
Except my son. I suspect he’s just been wearing the same clothes for three weeks. I choose not to think too deeply on that.
10:30am. I decided two days ago to post a photo every day. I am already behind. I want to become a good photographer. I have always had some form of artistic expression. I used to write music and play guitar. And sing. I can’t play guitar anymore. I can’t sing, my voice has been ruined by cricoarytenoid arthritis. So I can’t write without an instrument or a voice to sing it with. Obviously I write a blog. I did some drawing for a while. Too hard on the hands. I can’t grip a pencil for that long most days. Just resulted in frustration.
Then I discovered photography. So, back to the point. I decided to post a photo-a-day to my facebook page. Now I think I will start a photoblog. I’ll install wordpress and it will serve as a portfolio, because one day I will be doing this professionally. Yes, I will be that good. I need goals. I need something to do. I need to keep my brain working, even when my body doesn’t. I will not lie here and feel sorry for myself.
I used to be a web developer. A simple wordpress install would take me no time at all, years ago. Today I can’t think where to start. Brain fog, go away. Why can’t I think? The sludge that was once my brain requires more coffee. But the coffee is over there, and I am over here.
Lying on the couch. Again. Still. My laptop on my lap. All those years I carried around a laptop. It never actually sat on my lap. Now it’s always there. I ‘work’ from the couch, with laptop on my lap. This strikes me as funny somehow…
11am. Nausea, check. Dizziness, check. Exhaustion, check. All the painful areas listed before are still painful. Very painful. Walking is not my friend. So I remain here on the couch fighting with a wordpress install. My hands hurt. I’m furious because it’s throwing error messages I’ve never seen before. There is nothing simpler than installing wordpress. Brain why won’t you work!
11:15am. Crap. I forgot to have breakfast. Maybe try eat something. Might feel a bit better. Eat. Throw up. Was a good theory. Like so many things, doesn’t work in the real world.
12pm I have to call my rheumy. Orencia isn’t working. I took it for 8 months with only minimal improvement. And when I say ‘minimal’ I mean none. I’m a ridiculous optimist. Then I took a break, for lots of very good medical reasons. It’s doing nothing for me now, except giving me an eternal hangover of nausea, dizziness and knock down fatigue. And depression. It’s time to change. Move on to biological number four. Except I can’t get through to her. I can never get through to her. Her receptionists usually take three or four days to pass a message on to her, and usually that message bears very little resemblance to what I actually said. We have compared notes before, where I ask her what message she received, and then I explain what I actually said. We laugh. Still, she does nothing to discipline, or train, her staff. So it’s not really that funny.
12:30pm. I called. I have a five minute ‘emergency’ appointment with my rhuemy this afternoon. Excellent! Now to find someone to be on standby in case I can’t drive by then…
12:45pm. I did half the dishes. I had to sit down before they were finished. The rest will wait. I need to lie down.
1:30pm. Going to have coffee with my friend. She lives close by. I need to go see her, even though every joint in my body is aching and I feel so nauseous coffee is the last thing I want. I texted her. I haven’t seen her in weeks. I have been too sick. I know she’s pissy with me. I can feel it. She doesn’t answer my text. Eventually she does. She wants me to come to her house. She is making a point. I tell her I will. Because otherwise this friendship will bite the dust too. People get tired of me being sick. Ultimately it just bores them. I’m too much trouble. But I don’t have many friends left. So I will go to her house and put a smile on my face and maintain. Her house is less than a kilometre away. I will drive, because I can’t walk that far.
2:30pm. My mother called. She means well, but she wants me to see this doctor that her friend who has Lupus sees. And the doctor has RA and Lupus as well. But what can this doctor do? I am on all the right treatments. My rheumatologist is doing her job. This doctor is a GP. She can’t even prescribe the meds I need. And the energy that it will take to go see her is just too much.
But this doctor doesn’t see new patients and they have organised an appointment for me especially and now I look ungrateful. No one understands. There is nothing anyone can do. This is my life and I have to accept it. I stopped looking for miracles years ago. Because I HAD to. It’s too devastating to constantly get your hopes up, only to have them dashed. Going to have a little cry now. Not even sure why this has upset me this much. Oh yeah, that’s right Orencia makes me all teary and upset and depressed. Remind myself that they have very good intentions and they are trying to help. At least they care. Sniff.
3pm. I have done another quarter load of dishes. The rest are STILL sitting there. I have a stool in the kitchen that I take rest breaks on. I’m afraid I need a lying down break now. I have folded two t-shirts, three pairs of yoga pants and three pairs of socks. There are STILL four baskets full of washing.
Nothing ever gets finished! I can’t stand it anymore. I want to cry. I attack teeny tiny pieces of all the things that need doing. The bare essentials. The surface veneer, but it doesn’t stand up to even mild scrutiny. Nothing ever gets done. Nothing is ever finished. Nothing is ever clean. Nothing is ever tidy. Not one room in this house. It’s all a brothel of mayhem and quickly wiped over grime. Picking clean washing out of mounds of clothes on a dirty floor is the perfect analogy for my whole life. Our lives. Me and my kids.
My kids do try, but frankly they suck at cleaning up. They are teenagers. They just do a lousy job, but I thank them and encourage them, because at least they are trying. They care. They are doing their best. They are only 14 and 13.
I’m so tired. I need to sleep. I can’t sleep. There’s no time now.
4:00pm. OMG what do I cook for dinner. No one’s hungry. Least of all me. I lost interest in food a long time ago. Something easy. Of course I have to shop. Crap. Time to go to Rheumy. Will have to stop at the shop on the way back. It will be peak hour then. And I can barely walk now. Cheese on toast, anyone?
4:45pm. The waiting room is full. There are no chairs, yet a young woman is letting her approximately three and four year olds play all over a couch that people (sick people, who are in pain. ME) could sit on. I put on my best ‘fun’ voice and ask them to scrooch across and make some room please.
They do. But they keep yelling. And screaming. Mumsy thinks it’s cute. She encourages them to sing that son Daddy taught them. DOES SHE NOT UNDERSTAND THIS ROOM IS FULL OF SICK PEOPLE???
Dear Every-mother-in-the-world. The only one who finds your kids’ yelling and screaming and running around in circles and stomping on people’s arthritic, painful feet ‘cute’ is YOU!
Reign them in. At least try. The correct response to an ‘Owwww, that hurt sweetheart, could you please try not to stomp on my foot’ when someone speaks it to your child is NOT to laugh.
5:15pm. Receptionist has had enough of feral kids. Asks them to sit in the other room. Communal sigh of relief.
5:45pm. I’ve been waiting an hour.
5:55pm. Rheumy time!!! She’s kind and caring. She sees I’m in pain. She’s switching me to Orencia infusions, because she’s had some success with infusions even after injections have failed. It will take 2-4 weeks to arrange, so she tells me to do a prednisone burst. I almost cry. A predisone burst is the only way I’ll get through the school holidays and the kids will actually have some fun. This is what matters most.
6:30pm. Home. Collapse. There was no way I could stop at the shops. Son puts party pies in the oven.
7pm. Son wakes me up. Did I fall asleep? Really? Take handfuls of pain meds.
8pm. Stare despondently at the new load of dirty dishes pushing into the pile of clean ones. I almost had them done today.
9pm. In bed. Heated throw on top. Electric blanket below. Razor blades in my hips, battery acid in my knees, hands seized immobile, ankles, neck, lumbar spine, ribs all aching. Oh but the jaw! Show off.
10pm. I’m supposed to be asleep. Wait, didn’t I start a wordpress install earlier today? Where did I get to with that?
11pm. Still awake.
12pm. Still here. I’ll dose a bit, and wake a few more times before morning. At 7am the mess will start again. Only tomorrow I have to go to the pharmacist, retrieve my script, return it to my rheumy, get bloodwork done…doesn’t sound possible. But at least the thought is making me tired.