Rheumatoid Arthritis - Tips and Strategies for Living Well

 Tips – How do you stay fit, cope with stress, relax, or capitalize on a great day. Tell us your secrets for the best life possible.

I've had RA for twenty-six years now. I look at that number and it boggles my brain, to be honest. I've been sick for nearly half my whole life... As a concept, that just seems ridiculous - but unfortunately, it's my reality, as it is for far too many people.

What twenty-six years gives me though, is two and a half decades of experience living with this disease. On social media, in some of the support groups, they call people like me veterans...and for good reason. 

Mind you, for me it's a bit complex as there have been two distinct phases of my disease - the long, slow deterioration of mild disease that just chugged along in the background, and only really completely sidelined me if I'd been stupid enough to forget it was there and push myself to limits that would have been an issue for someone completely healthy. And then there's post 2013, and sudden severe and very active disease that can totally floor me for no other reason than the normal ups and downs of the disease itself. 

As I type, my hands are screaming at me. I DID make more bread than I usually do over the weekend, given the meals I cooked, and two of the batches did require a little kneading - our house bread doesn't...check out THIS POST for a brilliant bread hack if you want to make your own and it's the kneading that's stopping you!

I digress... 

I'm going, for the purposes of this post, to address this more recent phase, as the reality of the changes since 2013 have felt, at times, as if I've been newly diagnosed. I've had ALL of the fears and panics that I had back in 1992 with the original diagnosis, and this time, they've proven to have far more foundation than they did back then.

Working  
I freelance. I was writing professionally alongside my job - something I'd been doing since 2004. So I have continued to do that, scratching around for any paid opportunity I can find. It's work I can do in my PJs, and even in bed on a bad day. I make my own schedule. When, as they are today, my hands are particularly bad, I use compression gloves (note to self, go and get them on NOW!) and I work in small bursts.
 
So, if working a regular job is an issue for you, look to your skills. What are the things you do well - in the workplace and recreationally? Is there a way you can turn that into a business or a freelancing activity so that you can work flexibly from home? If you think you can, go for it. In addition to my writing, I'm also slowly rebuilding my art practice, and hopefully that will begin to pay off as I find more places to exhibit and hopefully start to pick up commission work. 

Household stuff
I'm a creative - I don't find housework a creative activity...so it's never been a huge priority for me to have a spotless house. Dragon Dad is a bit of a neat freak, and really likes things tidy, so it's been a huge learning experience for us to settle into a compromise situation that doesn't drive us both bonkers. We're also living in a very small house that doesn't have space for me to have a workroom, so my desk is in a corner of the living room, and my art studio is our dining table... Creative chaos, I call it - he often calls it a mess! 

DON'T sweat the small stuff. Outsource, if you can afford it. Get a cleaner to do the work that is painful and exhausting so you have energy for other activities that bring you joy (unless you're one of those odd souls who likes cleaning, in which case, just go for it!). We can't afford a cleaner. So, Dragon Dad does all the heavy cleaning. I can, and do, sweep the kitchen floor every day or so. Any more than that will render my hands useless, and then I can't write or draw. Not negotiable. So he does that. He hates washing. I do that - cos the machine and the weather do all the real work of cleaning and drying the clothes. 

I do most of the cooking. I've simplified a lot of things I do... Also, we are eating very simply because we just don't have the money for all the good stuff right now, so all my cucina povera skills from years living as a sole parent are on in full force. 

When it comes to food - EAT WELL. I can't stress this enough. Our bodies are under siege from the disease. We do ourselves no favours at all by eating badly - and by badly, I mean taking too many shortcuts with packaged food, skipping meals, and not drinking enough water. There's no reason at all, even on a tight budget, and when we feel like crap, for not eating well. And eating fresh. I wrote THIS POST some time back with a bunch of my food strategies to cover the times when I'm really not feeling up to cooking much, but that don't short change us on either nutrition or flavour.

A household is a collection of people. For us, it's just the two of us. Back in the day it was my two boys and me. It doesn't matter how many or how few people live in your house, it should be a collective. It should NEVER be the job of a single person to be responsible for every part of maintaining it. For those reading how have kids at home, a browse across the whole blog will show you that I believe kids should be contributing at whatever level they can manage from the get go. Little children can wash dishes, pick up after themselves, peel vegetables, pair socks, etc. Teach them to cook and be involved in meal prep - they should be able to put a meal together on their own by the time they hit their teens, if not before. Similarly, they can learn to weed and grow vegetables, and older bigger kids can mow lawns and wash cars. They can, incrementally, learn the skills to be completely responsible for their own bed linen and clothes - changing and washing sheets and doing their own laundry. And they can run vacuum cleaners and push a broom. Remember - if they can run a smart phone, they can do ANY of this stuff, and there's no reason on earth why they shouldn't be contributing to the household that supports them. And with partners, the household should be a shared responsibility. So, negotiate between you who does what, according to what you can and can't manage and the things you like and dislike doing. Chances are, it'll fall relatively evenly down the middle. As far as childcare go, if you're partnered and have children, you are both parents... Dad's don't babysit, they parent. So share the load.

Friends and family
These are the people you'd think will always have your back, and in an ideal world, they would. Unfortunately, our world is far from ideal, and I've heard some awful stories from people who've lost friends, and have very difficult times with family members with issues around being sick. I have to say, I've been very fortunate for the most part in that regard, and haven't lost too many people. I HAVE weeded people out though...that's sometimes been necessary. Any relationship that causes more stress than joy is going to take a toll, so if there are people like that in our lives, we need to think seriously about whether that's good for us or not, and take appropriate steps. 

One critically important thing though - and I MUST address this, because I see SO many comments in the support groups around this, and have far too many conversations about it with various people. 

CUT THE GUILT. 

I hear - all the time - people, particularly women, saying they feel bad for not being the mum they 'should' be, or the wife, partner, whatever... It's NOT your fault that you're sick. You got sick, you didn't make yourself sick to make other people's lives difficult. So, in the first instant, there's no need to feel guilty about being sick, cos you can't help getting sick. And secondly, anyone who gives you grief about their lives being more difficult because you're sick is an arsehole. And it's THAT simple. because thay's a cheap shot at you, when they don't have the decency to deal with how they're feeling about whatever prompted the cheap shot, which is just bad behaviour, and there's no excuse for that. Anyone that does that to you regularly is a major arsehole and shouldn't be in your life. 

Be OK with saying no if you can't manage something. If you can't do it, you can't do it and that's really all there is to it. And it's not up to you to then have to find solutions for other people - not for people old enough to do that, and that includes older kids. Our own kids, well, yes, their lives ARE affected by having a sick parent. But that doesn't have to be something that's seen as ruining their lives. Because it needn't. Sure, there might be things youcan't do with them, but there'll be a ton of things you CAN do, so focus on those. Let other people do the more physical things and share the love. When it comes to doing things FOR other people, well, that's one of the great joys in life for me. But I do need to temper that and make sure that I don't over-commit myself, because saying you'll do something and then not doing it is worse than saying no in the first instance. So if you know you might not be able to follow through, be honest - with yourself and the other person, and say no. 

I could go on and on and on...there are so many things. But I need to stop typing so I can paint later on and finish the piece I'm working on. And I need a shower - having taken on posting for RABlog Week, I promised myself to write and post before I shower every day to make sure it gets done. I slept late this morning. It's gone midday now, just, and I'm still in PJs and I need to get dressed! 

My bottom line is, put the things in place to live the life you want to live, RA and all. FIND the things you love to do and DO them. Say no to the things you don't want to do or cant do. Strive to create balance in your life so that it's sustainable. Make sure you have things in place that you want to get up and do. RA is a disease you've been diagnosed with. It isn't your life, so don't let it become the only thing in your life.