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...

Wednesday, 22 February 2017

When you have RA, and someone close to you is in pain or unwell

So, Dragon Dad has done his back. It's a chronic issue - years and years of cycling have resulted in a significantly weak spot in his lower back. He has some low grade chronic pain there, but because he stretches regularly and keeps himself fit and strong, it's usually quite manageable. 

Until he does something stupid - his word, not mine. Although, when he told me, I did think it...

In yet another effort to shed those last few kilos he has become obsessed about - particularly since he - a one time track cyclist turned distance cyclist - started tackling climbing in a big way. It started when No.1 got into cycling, having entered himself - a runner - in a triathlon, for which he'd need a bike and to be able to swim competitively (and that's a whole other long story). Once he'd started to get basic bike skills together, Dragon Dad started going out with him, mentoring him and teaching him road skills on a bike. Then came the day he came home after their first long ride in one of Sydney's national parks.

"I hate him!" he said to me, "The little shit can climb!"

Climbing isn't something you can learn, per se. It's a talent within cycling, which is why the big teams - think Tour de France - have a mix of different types in them. The sprinters, the workhorse types who can just keep going, and the climbers. No.1 is a climber. He can do distance, and after years in the gym building strength to last in long distance runs, he's strong as well as very fit. But that's not all you need to climb a mountain on a bike - you need that elusive talent.

So Dragon Dad, as can be his way, got obsessed about climbing. To give him his due, he was looking for a new challenge on the bike, and had talked about going back to the track. But No.1 had handed him a challenge that his inner competitor couldn't resist. 

His bike is also his 'cave'. He NEEDS to train. It's one of the things he uses to keep himself emotionally on track. He chases his demons away via physical exertion. A lot of people do that. Apart from anything else, you get a goodly rush of endorphins when you train hard - painkilling, feel good hormones. Lovely stuff. He starts to get twitchy when he doesn't train regularly. 

Now, typically, climbers are small. While No.1 is 6'2", he inherited my exceptionally fine frame, and weighs maybe somewhere in the high seventies (kilos). Dragon Dad, ex sprinter, is a big man. 6'1.5", and built. BIG muscles, big legs, particularly. There's hardly any fat on him - he's exceptionally lean - and he weighs in at a bit over 100kg. He's climbing well, these days, regularly beating his cycling mates - all of whom are considerably lighter than him, with much lighter bikes too - up the hills they're climbing. But a lot of that is sheer guts and bloody mindedness, because he's hauling very many more kilos up those hills, between his own weight and that of his bike. Hence the obsession about dropping down under 100kgs, preferably making 90kgs...

Cue fad diets and extreme training. Most of the latter happens on the bike, bolted onto a trainer in the carport. An hour on the trainer doing the programs he's doing equals two on the road. So he wanted to add to that. Came up with a new food plan - which has him hungry all the time, and he does 'hangry' really well...or not well, depending on your point of view. And found a particularly nasty gym routine, joined a gym that had all sorts of alternative equipment, and started.

In his second session, doing something with a loaded sled, he stuffed up, and injured his back. Came home much earlier than I'd expected, in a world of pain. He did do as I suggested at that point - had a hot shower and got some heat onto it, took some anti inflams and painkillers, rested, and after some pressure, took a Valium too - some preventative muscle relaxing in the hopes that it wouldn't jam and go into spasm. BUT, he wouldn't maintain that over the next few critical days, so it jammed. And the pain got a lot worse. Initially, he was stoic - he can do pain. But as time went on and it continued to get worse, that deteriorated too. I suggested a physio...

"What's a physio going to do? They're all hopeless!"

Well, they're not. Not the good ones. And I have a referral for one here who sounds as if he works very much like my wonderful Sydney one. I've yet to see him, but I trust the person who referred him. But no, he decided to go have a massage. Came back feeling a little better, as the massage would, of course, have temporarily relaxed the spasms. But, it would also have stirred up the inflammation, and by the next day, it was bad again. A couple of days later, he conceded that a physio might be a good idea - but instead of going to the one I have the referral for, he went back to the practice where the massage therapist is and saw a young one there. Came back furious, and ranting. Had been given - as he put it - a lecture on strengthening his core, and posture, and little actual treatment. Fair enough that he was cross - his core is very strong, as is his posture. It's an INJURY. Needed ultrasound, possibly some realignment, and maybe some needling. A follow up visit later that day to the doctor - at a mass clinic where he never sees the same person twice in a row - had him come home with slow release paracetamol and a mild NSAID - and MORE ranting. Useless physios, useless doctors - over and over again. 

A week on, and it's pretty dire here. Over the same two weeks, I've had my infusion, and the resultant side effect headache, on top of some fairly serious pain because my body had lost the plot prior to the infusion and it takes some time for the new dose to kick in. It's also been a bad sinus congestion month - also a sometimes side effect from the biologic. I've felt very flat and more than a bit useless, as that first week was a bit of a write off. Physically I'm coming good, but the emotional toll of a climate of constant aggro from Dragon Dad due to his pain and frustration is getting to me. He's not been able to get on the bike for two weeks now. He's like a caged tiger, needing a jungle. Until his back is better, he's going to be stuck. So somehow, he's going to have to find a way out of the emotional state he's got himself into, before there's a massive explosion. 

I was at the end of my rope last night when he turned down dinner. It's been an effort to cook - I love cooking, so it says much about MY emotional headspace that it's been an effort - and having him then decide not to eat is hard to take. So, I told him that I wasn't feeling good about it. Described MY feelings. Made no accusations. But, he took it as criticism. And has been sulking ever since. Hence my big long vent in this post, because I have to get it out of my system. Because my blood pressure is clearly off, because I've had the shakes ever since I had my coffee this morning. I'm teary. I'm frustrated. And truth be told, I'm lonely. Back in my single days, I was often lonely - which you'd expect, being alone. Lonely IN a relationship is so much worse. 

So, I went shopping after having my coffee. Bought some red cabbage and have experimented with a quick pickle. He loves pickled things, and pickled cabbage is his latest thing, so I thought I'd have a go making it myself. And I bought apples. For a pie. Because it's his favourite thing in the world. And yes, the object of the exercise is to guilt him into realising he's being a prick, and it's time he pulled his head in and started behaving like a decent human being again. It's dirty pool, but right now, it's all I've got.