Thursday, 23 February 2017

Rheumatoid Arthritis and continuing to work.

I started writing this post a couple of weeks ago, and then hit the wall. I know other bloggers who set up posts and then nibble away at them in bursts until they're done, and then publish as they finish. That doesn't work for me. If I'm going to finish, I really need to be able to get it going and then keep going until I can finish in one hit. Once I stop and shut it down, it's a bit done for... Those part done drafts tend to get dumped, on the whole, but given the topic, I decided I had to knuckle down and start again!

So, working with Rheumatoid Arthritis...

The disease, being what it is - a highly variable and unpredictable disease - can make holding down a regular job very challenging. Over the years, I've mostly cobbled together a fairly unorthodox work life. I've worked for myself as a singer, teacher, and artist. When I've worked for other people, it's mostly been on short contracts. Before I had the boys, I'd only had two full time, 9-5 type jobs. I've had big chunks of time where I combined work and study, which could get a bit crazy, but was always interesting. The main thing about working like that is that the hours vary. There are inevitable crazy busy times, but there can also be significant down times, when it's eminently possible to refuel.  

That shifted when I moved back to Sydney. It turned out to be very difficult to break into the industries I'd been working in - you really have to know people, and I didn't. I went back into hospitality - something I'd sworn I'd never do - and worked three days a week in a Paddington cafe. Hospitality is hard, physical work. Even though, compared to now, my disease was comparatively mild, being on my feet for full days was incredibly difficult. I'd get through a day, then have the next one off, but then the third day I'd be back for another day - never enough time to fully recover. My pain med use slowly went up to cope, I lost more and more weight as pain destroyed my appetite, and by the time I got a different job, I was really struggling. 

The next five jobs - gotta love the whole contract environment we have now... - were all 9-5. For the first time in twenty-odd years, I had to show up at the same time every day, to a desk in the same place, complete with office appropriate clothes - that in itself was a tricky thing, given my artist/musician bohemian life style and wardrobe! The reception-based jobs - two of the five - were the toughest, because a receptionist is stuck at a desk all day, bar coffee and lunch breaks. When the phone rings, you have to be there to answer it, and no matter how you are, you have to present positively and politely. Two of the jobs involved lots of on the feet time, but that balanced out the necessary desk time. The last job was a marketing job with lots of offsite time, and running around between meetings - so not always stuck at a desk, but some serious hours. It was eighteen months into that last job when my RA turned feral - six months of rapid deterioration ensued, with me ending up in hospital, barely walking, and working from home until they reached a point where I was 'medically retired' - code for, lost my job. 

Being on deck all day, every day, with a good work face on and with sufficient energy to last all day, is tough. Being open about the disease is also tough, and can cause issues, depending on the attitudes of the people we work with. I've had varying experiences with colleagues - from impatience and disbelief, to huge amounts of support and efforts to be understanding. 

One thing I did have going for me was my writing. I started freelancing thirteen years ago. Sometimes it's been very busy, and there have been regular commissions and relatively regular pay cheques, and other times, not so much. Unfortunately, due to the general financial climate, funding in the arts has become much more scarce, which knocked the big base of my writing out. It's a while since I've been able to sink my writing teeth into a juicy arts piece, and I miss them. Many of the online publications I used to write for have folded too. But I got into ghost writing with a Sydney based company and that's continued to see deposits landing in my bank account - even if they've been a tad variable at times. Periodically, I summon the energy to do a bit of furious networking and following up of leads and suggestions to drum up more work. Sometimes that's successful, but more often it's not. There's a lot of competition out there, and there are far too many potential employers who don't think they should pay a premium for quality writing. So, at this point in time, I certainly couldn't support myself with the work I'm doing. 

However, the huge bonus is that when the work is coming in, I don't have to get myself anywhere to do it. My computer is right here. I don't need a corporate wardrobe - the clients don't know if I'm working in my pyjamas or actual clothes. It also doesn't matter when I do the work, as long as I meet the deadline - if my head is particularly fluffy in the mornings, I can wait until the drugs have kicked in, I've had my coffee and I can connect the brain cells. On a really bad day, I can set myself up in bed and write there. So, freelancing again definitely works better for me than any 9-5 proposition possibly could. I'm also working on finding different ways to start earning from my art again. I know I can sell - it's a matter of finding ways to consistently produce the work, and outlets where it can be shown to best advantage. Again, with a home-based activity, I make the hours.

What works for me won't necessarily work for the next person. I'm fortunate that Dragon Dad is able and willing to support me. I know when money is tight the fact that I can't contribute a wage is an issue, but at the same time, we both know that a regular 9-5 job can't happen any more. My body has become reliably unreliable! So it's got to be about me finding ways around that to utilise the skills I have to create another patchwork of different activities that can generate an income of sorts. At the end of the day, that's the challenge for anyone with RA - because our bodies call the shots. Which sucks, but it is what it is.

And I have the best looking PA...


  1. Well you do have a stunning PA sitting there. I am fortunate that today I do not need a job to keep an income, but that will change at some point in the future.

    I do wish I could work. I love working, I love it so much in fact I would go back in a in a minute. Sheryl says I need a hobby instead of wanting to go back to work.

    I still want to go back.

    1. I liked working too - I liked the get out of the house and be in a different place with different people aspect of it. Being able to freelance doing something I enjoy is a real privilege and I'm not unaware that being able to do that makes me very lucky. But it can be very isolating, which is an issue - especially when the disease itself can be isolating. And some more work would be good - something chunky I could sink my teeth into instead of the endless small business articles that are really very boring! Time to write my bestseller, methinks, LOL!
      My PA IS gorgeous, and she's excellent company. Her small offsider is less clued in about work time though, which can be a tad distracting!