Female, Age 41. Yesterday, a friend asked if I’d like to see a movie with her one night next week. I had to decline, because this new rheumatoid arthritis of mine is relentless and I struggle even with home stuff and kid stuff.
I have to prioritise the bare minimum over any fun stuff. Do you know what she said? “It’s all in your head.” I’m a youngish mum with a chronic illness. My blog is about what it’s really like living with arthritis. I haven’t experienced a miracle cure (but I’d like to!) and no… it’s not in my head!
Wednesday, 7 a.m. 1 spoon.
Miss 10 stumbles into the room and snuggles in for our morning cuddle, followed by Miss 8. It’s our favourite way to start the day, and it reminds these two they’re loved, despite my limitations.
7.15 a.m. 5 spoons.
I’ve had a quick shower and am dressed and breakfasting with the girls. They help themselves and tell me what they’ve got on at school today. I’m laughing and chatting with them, and it kills because this flare is attacking my jaw joints with what feels like a hammer. The painkillers won’t kick in for a while, but I can’t exactly say sorry girls, mum’s not going to talk or smile or - goodness me no – laugh, until about an hour’s time. So I suck it up. I take the time to straighten my hair properly, and put on some minimal makeup. It uses a couple of spoons, but it’s worth it because it helps me feel (and look) like a normal person.
8.30 a.m. 5 spoons.
We walk to school and the dog races around the park – this is a flare week so there’s no way I can walk him myself. He rushes off to do his first business under the tree right up at the top of the hill. The second business is at the opposite side of the park, and thankfully the third is right next to the bin. (I know – three! – this dog is a machine). Following his trail is enough exercise for me. According to my Fitbit I’ve covered 2km already! I’ll pay for that later.
9.00 a.m. 1 spoon.
I used to do a yoga class on Wednesday mornings. In fact, pre-RA, I used to do three classes a week and this was the super easy one, but now I email the studio to put my annual membership on hold because yoga takes up too many spoons. The studio is understanding and supportive. I try not to think about what they’re doing in the class, and delete it from my iCalendar so I’m not reminded every week of what I’m not able to do.
I’m sore and tired from the morning, so I snuggle up on the sofa with the dog in what has become known as “my corner” and Mr, who’s on his way out to a meeting, makes me a cup of tea before he leaves. He’s a keeper! I have a look on Facebook and there’s a post on my support group page – a member is an hour into her six-hour infusion. It looks like she’s a cancer patient going in for chemotherapy. She IS a patient going in for chemotherapy, only it’s not cancer, it’s RA. I’m shocked.
10.00 a.m. 5 spoons.
I feel great! Why am I lazing about on the sofa?! I spring up and attack the laundry backlog. Then I grab a cloth and whiz round wiping down all the surfaces. I do this every day, so that the house is always clean-ish and tidy-ish enough to skip the weekly ‘proper’ clean. The whizzing around slows, I’m not done yet but I’m so tired! And my jaw is killing me! I go back to “my corner” and put Dr Phil on the TV. The dog is still there.
11.45 a.m. 1 spoon.
I can’t take it any longer, so I down an early lunch so I can have the next painkillers. Back to the sofa with another cup of tea, Dr Phil, and the dog. I can see the spot on the floor where I cleaned up Miss 8’s sick two weeks ago. It’s 100 percent clean, but the cleaning took the shine off the floor and it’s been taunting me; another job I should’ve done. I vow to attack it with the steam cleaner today. I should also steam the walls in the hallway where the dog dried himself after that heavy rain. “Should, should, should…”
12.30 p.m. 5 spoons.
The drugs have kicked in. I’ve got that load of washing in the dryer and another one in the washer. I’m feeling environmentally guilty! And financially – how much does it cost to dry a load of clothes? I do a quick calculation on Energywise; using the dryer all the time, instead of only a couple of times a week in the winter like I used to, will cost about $450 more a year. $450! Now I feel really bad. I finish the quick wipe around I started earlier, and set up the steam cleaner.
And…we’re back on the sofa with Dr Phil, the dog, and a cup of tea. Knackered. I just lie there, and zone out.
2.45 p.m. 3 spoons.
My Fitbit is buzzing to remind me to pick up the girls. I’m still blah, so I break out the Nespresso machine. It kicks in straight away for this coffee virgin! The girls are buzzing with news of their day and it’s a fun, easy walk home. I’m grateful I don’t really need to contribute to the conversation because my jaw is grrrrr. Smiling hurts. The girls are excited to see the steam cleaner out – ah I’d forgotten about that. I use my coffee high to do the steam cleaning, fold the drying, get the washing in the dryer, and we head out to Miss 8’s dance class.
4.30 p.m. 3 spoons.
Miss 10 and I are at the library, doing homework and choosing her books for the week. She gives me her notices and they’re all asking for help with the school fair. I’m one of the go-to helpers; I’ve been on most of the school trips, I’ve manned a gazillion sausage sizzles, I’m at almost every fundraiser, but now… I swallow my pride and email the parents’ association explaining my circumstances, and ask to be taken off their email list. I just don’t have the spoons for this. I vow not to feel guilty – I’ve done my time.
5.30 p.m. 1 spoon.
We’re picking up Miss 8 and bump into a friend, who asks if I’d like to see a movie one night next week. I have to decline, because this RA (rheumatoid arthritis) of mine is relentless and I. Just. Can’t. Do you know what she says? “It’s all in your head.” I wish it was. I’m impressed that I don’t feel hurt – must be past that stage – it feels good to laugh and think, “Goodness me, the things people say!”
6.00 p.m. 5 spoons.
I’m done, but the day isn’t. I scoop up the dregs of energy inside and decide I’m going to press on until I drop. I make spaghetti bolognese (iron – check, 5+ veg – check, they eat it – check). Just as I’m serving up, Mr says something funny and I laugh. O.M.G. The pain is an 8. I chuck a wheat bag in the microwave, then rush to my bed and curl up in child’s pose, holding onto my jaw. The irony – here I am doing yoga after all. Mr brings up the wheat bag and I distract myself with Facebook. That lady with the infusion? She had a reaction so it took nine hours. For her, I put my figurative big girl pants on and get my butt back into the kitchen for dinner. It’s hard to eat, I can’t open my mouth very far. But I force myself, because after food I can have painkillers.
8.00 p.m. 1 spoon.
The girls are in bed, but Miss 8 keeps popping out with questions, complaints, ailments…I know she’s worried about me and needs some reassurance. She’s convinced herself she has RA too. I hop into bed with her and give her a big snuggle. Then it’s back to “my corner” for some Mr time.
Well, guess who’s still awake! Of course it’s me, because I had that big hit of coffee at 3 p.m. I’m tired and sore, so I pop a melatonin and finally drift off. Fingers crossed for more spoons tomorrow.
Spoons?? The analogy is that people with chronic illnesses wake up with a limited number of spoons of energy every morning. Every activity you do in the day takes away some spoons – little things may use just one spoon, bigger things many spoons.