Thursday, 19 January 2017

Rheumatoid Arthritis - Finding and maintaining your mojo

So, I'm tired because I'm sleeping badly - Dragon Dad is away, which isn't helping. I'm sore, from the dropping off of the bio pre-infusion. I had the infusion on Wednesday, so now I have the nasty side effect headache - and a drug induced headache doesn't respond to more no point in piling on the Panadol.

What to do? 

What I FEEL like doing is just curling up and vegging. And, to be honest, there has been a bit of that. On my own, I don't have to think about meals in the same way. I still haven't really got involved in too much since the move, so there are very few places I have to be at any given time. My work is freelance, and I've only got one piece to get done at the moment and that's not due til the 23rd.

Can you see the issue here though?

I can, and there's a part of my brain that's fighting my inclination to just veg all the time away while Dragon Dad isn't here. He's a great one for hauling me out for a drive, to see a movie - basically, get out of the house. Right now, that feels like a massive effort - and therein lies the problem. 

One of the most insidious things about managing life with a chronic illness is to give in to the lethargy, fatigue, pain, etc, and just let your world shrink down to the confines of  your house. There are times when that's entirely valid - during a bad flare, there's no point in trying to be a superhuman, and bash your way through normal activities. That just exacerbates the flare and sets you up for a mighty crash. Keeping moving gently though, that's important, because the body needs to move for the circulation to be stimulated - and that helps ease the inflammation a bit. And it also means you can get to the end of the day without feeling like you've wasted it entirely - and that's really important for self esteem. 

For these indeterminate middle of the road 'blah' days when you just don't FEEL like being bright eyed and bushy tailed...what then? Well, ultimately, unless you really want your life to shrink to the confines of your house, it's really important to try and make some goals for the day. They don't have to be huge. A friend and I compared notes yesterday and realised we'd both managed to achieve a whole two things each - but we decided that that made us awesome! Which made us laugh - which is good, because the endorphins that laughter stimulates are the body's natural pain killers, and any time you can get a good rush of those is a good time. 

Today, I got myself out into the really yucky weather - although, all the rain meant I didn't have to muck around with hoses watering the garden so I wasn't really that upset by it - and had a coffee at a place I've recently discovered before heading into the supermarket to pick up some basic groceries. I've mostly been grazing, so I didn't really need much, but the cats' food was low - and believe, me, there's a LOT of motivation to keep their food stocked up because two hungry Siamese are loud! The other thing I promised myself I'd do was write a blog post - hello! Casting around for what to write I kept hitting walls - until I realised I was in a funk and THAT was my topic. 

So, some thoughts on how to avoid the funks, and the cycle of doing less and less until the day you realise you have no life - which is beyond depressing...
  • Start a project. It might be craft of some kind, or writing. My current new thing is the photo challenge I wrote about recently, and if you drop by the Dragon Mother Facebook page, you'll see the photos I'm posting daily. What it does for me at the moment is to force me to think creatively about the things around me so I can find something to photograph that fits the daily prompt. It's good for my creativity, makes me think outside the box, and it's also a lot of fun seeing how other people respond to the same prompt.
  • Do some exercise. YES, exercise. I'm no gym if I can manage it, anyone can! My shoulders are slowly improving a bit, so I should be able to head back to the pool soon and see how much ground I have to make up. In the meantime, I've been doing stretches and exercises at home - partly prompted by my neck going out again and I realised I'd not been doing the preventative exercises for that. Mea culpa - back to that. If you have a dog, you have the perfect opportunity to get out for a walk every day. I could put the harnesses on the cats and see how far we get, but I don't think they'd like it very much, so we won't go there...
  • Cook. Get in the kitchen and make something nice. Cooking becomes a chore when we find ourselves just punching out meal after meal for others. Think about what you might like to eat, then shop for and cook that. Make a batch of biscuits or try out a new dessert recipe. Whatever you make, use it as a reminder that the kitchen can be fun.
  • Invite a friend over or arrange a coffee meet up. Make it for a week or so ahead of time so you have something to look forward to. Dragon Dad is a creature of impulse. Me, I like having things in the calendar coming up, because for me, a lot of the fun is in the anticipation.
  • Play with your kids, if you still have kids at home. The boys and I used to have play days, when we'd build a fort using the furniture, or get the board games and cards out, or all sit down with the Lego. No.1 was a dab hand with a cardboard box too, so making a racing car for No. 2 or creating something else was often something we could all contribute to.
  • Try something you wouldn't usually do. When I have this conversation with people and try to suggest ideas, I'm often met with lots of, 'I don't like ....' Well. Maybe you didn't enjoy that one time when you tried whatever it was. Or you didn't enjoy the people you did it with - but you might find another attempt with different people has different results. And if it does involve a group, don't let the fact that you might not always make it because of the RA stop you getting involved. Everyone has reasons to not make a regular activity - and they still sign up. So, that book group, or craft class, or whatever it is...give it a shot.
  • Most of all, make plans - make making plans a habit. It's far too easy to end up with the only things in your diary being doctors' appointments and medical tests. That's pretty deadly. Think about the stuff you enjoy doing and find ways to keep doing them. You may well have to adapt how and what you do, to be able to manage both physically and financially. That's OK. There will be ways, you just have to find them. Renoir had RA, and kept painting by tying paintbrushes to his hands - if you look at the works done late in his life, and compare them to the early pieces, you'll see the difference. The late ones are much looser. 
You can see, I hope, what I'm attempting to put across? Don't give up on living. We're a long time dead. And until then, there's a life to be lived, and the shape of that life is up to us...

Gratuitous cat photo, because I can, and because this blog post was written on my laptop, on my lap, with this beautiful company!


  1. Good morning, mi'love. It's good to see you standing up and hitting back! This is wonderful advice, not just for the chronically ill, but anyone who's made a sudden lifestyle change. As a recent retiree, I often find myself vegging in front of the Xbox without a care in the world, thinking at the back of my mind that I have all the time in the world, and the grown-up stuff can wait for tomorrow. Your list, I suspect, is going to help me considerably.

    In other news, I have met, through, a young lady (22) named Aditi in Delhi who hates her new job as a software engineer, and wants to transition to something writing based. I pointed her toward this web page, and told her that you used to write copy for clients. If she comes by and asks you a few questions, answer or not as you wish, but know that she's not some cyber-flake; I referred her.

    Well, it sounds like you're taking life by the horns, not that I ever expected anything else. This is really good to see. Excuse me now, while I go reexamine my own calendar!

    All the best,
    ~ Jack

    1. Good morning Cap'n! I'd not actually thought beyond the application of the list for chronic illness folk - but you're right. Thanks for the heads up! When we're healthy and/or working, there's usually a built in routine that keeps us up and moving, and going places, seeing people, being busy. You and I both know that all of that can get a bit overwhelming sometimes, but we don't have to think about keeping ourselves motivated in the same way. That all disappears with serious illness and, as you pointed out, retirement... Glad I could help, and I'll be interested to see what you'll be getting up to.
      I'll keep an eye out for your new contact. I'm still writing copy - to whit, an assignment sitting on my desk that's due Monday - I just wish there was a bit more around. Not an easy way to earn a crust, and I'd say she's probably earning a good wage in IT that might be a challenge to replace. Although, there may possibly be an avenue for her as a technical writer, based on her current area of expertise.
      It's a bit later in the morning than I'd planned to be still sorting out what I'm going to do today, but I do have some necessary errands to run, the sun is shining after two very grey days, and I will now go and get moving myself!

  2. I have had 2 1/2 months of vegging out. But I cannot watch TV. My TV is full of disturbing images, all from Washington. I hope at some point I might be able to turn my TV back on.

    Or, maybe it is OK to keep it off.

    1. I feel your pain, Rick. I've been avoiding all the coverage that's been on here. We also had an awful incident in the CBD here yesterday with a guy who ran a car through pedestrians, killing four of them, and many more injured, so my TV has been on the coverage of the Tour Down Under for preference. Same as my social media focus!
      Maybe get out and do something else with like minded folk rather than turning the TV back on?!

  3. Love your list of suggestions and love you description of how the fatigue grabs you and won't let go. Thanks fr that, now off to share.