Rheumatoid Arthritis - on NOT being a hermit...

I'm a fairly gregarious individual. I like spending time with people, going places, doing things... I belong to the extrovert end of the social scale - not at the extreme end, but I'm definitely not an introvert. Having said that, I am shy. I've always found it difficult to launch into new activities where I don't know anyone - walking into a new situation knowing no one is something I find very challenging. I don't always find it easy to fit myself in socially. Growing up, we mostly associated with family, so there weren't 'events', as such, where I learned how to make small talk and do the social 'thing'... 

One of the more insidious things with chronic illnesses is that it can get very easy to have your world shrink. Pre-2013, I was working, getting together with friends, going to gallery openings (I was doing a reasonable amount of exhibition reviewing), swimming regularly, going to different events as opportunities arose, and so on. A fairly regular, busy, contemporary life. 

Now, a visit to the cinema is a highlight, and the most social I'm being is the odd coffee get together with a friend. We've been going to shul semi-regularly, but haven't really got very involved at the synagogue apart from attending those services. Occasionally, we head to friends down the Mornington Peninsular for a drink or a meal. Mostly, if we go out, we're prowling different areas of Melbourne and finding what might well become familiar haunts - just the two of us. I've found Tai Chi Australia, and have been in touch. The most logical place for me to go to classes is about a 15 minute drive away and the next beginner class starts on the 18th of this month. 

Here's the thing though... I'm dreading getting to that first class - finding the school where it's being held, finding parking, finding the room, and then walking in not knowing anyone. I want to ask Dragon Dad to come, only he doesn't want to do Tai Chi, and I'm aware of just how pathetic that would make me sound. He's asked me a few times why I've not gone to services at the shul on my own, when he's not been able to go... A part of the reason is that the Friday services are at the end of the day when I'm most tired, so I dread the drive back after I've sat for an hour at the end of the day and am really stiff and sore - and that's what I've told him. But also, it's the whole going by myself thing, because I really don't know many people at the shul, and those I know are passing acquaintances, not actual friends. I've still not emailed the cantor about the choirs, which would alleviate that particular situation since once I'm involved, there'll be a core group of people within the community that I will get to know, and I'll have a 'place'... But it's still that initial step.

Why is this...? 

Part of my reticence is our current extremely tight financial situation. There are a number of things I've found that I could do - which would both throw me into getting to know people, as well as getting me out doing things I enjoy, but they cost. And we really can't afford extra expenses at the moment. Tai Chi fits into overall health care, so it's a priority that can be sorted out financially, along with other things that Dragon Dad's doing for his health and fitness. Some of the others, while no doubt good for my mental health don't feel that straightforward.

Another critical element is that new people mean explanations. When it's just Dragon Dad, or friends I have here already that go back some years, I don't have to explain. I can say I'm not well, and they're sympathetic, but don't need me to explain. Strangers are another thing altogether. My old friends have known me before this severe phase of the disease. They're not happy I've got so sick - for my sake. But they know who I am, what I've done, what I can do, etc. They know the whole me, not just the 'sick girl'... There was a time when I could walk into a new situation and it wasn't necessary for anyone to know. I was well enough for it not to show, and for me to rarely need accommodations to be made. If I cancelled something, it was usually for some big and immediately understandable reason - not because I was having a bad day. Because my 'bad day' now is about being too ill to manage something - too much pain, or too much fog, or too many side effects immediately post infusion, and so on. For instance, the Tai Chi class I'm looking at is on a Tuesday. So is my infusion, every fourth Tuesday... So, once every four weeks, I'll need to go to a different class on a different day, because the end of the day on infusion day is definitely not going to be an option. I'll have been sleeping most of the afternoon and I'll have the headache from hell, and a level of drug infused fatigue that's impossible to get past. I won't be capable of driving or being as physical as the class will require. And I'll have to tell them that - and make arrangements for which class I pop up in like a bad penny every four weeks...and tell the teacher of that class too. 

Little by little, all these bits and pieces of emotional baggage start to add up to the point that they can end up looking like an enormous wall of 'stuff' that just can't be scaled. But I don't think I'm alone. I suspect that this is a phenomena that many of us with chronic illnesses know and understand, even if it's not something we articulate for ourselves or anyone else. 

My rational self tells me that it's going to be FINE. That I don't need to get myself into such a state. Because when I do scale that mountain, things usually are OK. The friend I'm seeing most frequently at the moment is a new friend, in physical terms. I met her online in an international RA support group, and invited her to joint the Australian one I'm involved with. Then it turned out she lives in Melbourne so when we knew the move was really happening, I tucked that away in the back of my head for when we finally moved. I didn't do anything about that after we'd made the move though, not immediately. For one, there was that whole 'do I cross the line from online contact to face to face?' thing that's very much part of the online world vs real time. But also, it was that whole thing about taking that first step. Then I had a crisis situation that she became aware about via an online conversation, and in the end we did meet up in the next few days. Because it turns out we don't live very far away from each other, so it's REALLY easy to get together. And it's been lovely - given the context of how we met in the first place, we don't have to explain anything about illness, because we're both sick! 

So, things can work. I know this. But I've had almost three and a half years of my life steadily shrinking and it's really hard to acknowledge that I've got a part to play in that, and if I don't want to end up being completely isolated, I need to put my big girl pants on and just step up. Which is, ultimately, what this blog post is about. I'm putting it out there. Saying it out loud so I have to do something about it, because it's not hiding away in my head any more! Those of you who read this post now know too...so I now - well, once I hit publish - feel like I'm accountable! 

Wish me luck, folks. It's time to crawl out of my shell and start making my life happen again. And if I can do it, so can you, so tell me your stories!

Rheumatoid Arthritis and managing depression

It's been a difficult month. The weather has been all over the place. My body's been all over the place. Dragon Dad's been all over the place - with injuries, his appendix, stress with the business... And my head has been all over the place too.

It's difficult to keep a positive focus when there's too much going on that isn't great. I see all the 'practicing gratitude posts' on social media, and to be honest, they make me feel a big up-chucky... I do get the concept, but it just doesn't do it for me. I sometimes wonder - so cynical - how much 'fake-booking' is going on when I see them. 

Years ago, after decades of living behind a protective facade resulted in something of a breakdown, I promised myself - once I'd put myself back together - that I'd not let another facade build up again. Ultimately, it was destructive. That meant figuring out how to live authentically. And I know that's another buzz-wordy sort of concept, but I can't think of a less cheesy way to put it this morning! I do use publicising odd things I plan to do as a tool to make myself actually do them - once it's out there, I have to own it and then come up with the goods type of thing. Because I'm excellent at procrastinating, and then landing hard up against deadlines in a mad tizz of self-inflicted pressure and stress. So, I guess part of me looks at those gratitude posts through that filter. And it's why I've never succumbed to the trend - apart from generally avoiding trends anyway! I can just see myself managing a couple of days of posting my three things, then hitting a trough and having to face a choice between making it up, missing it altogether, or being brutally honest and posting that my day is shite and I'm not grateful for anything! 

So, I hibernate. 

There does come a time though, when I realise the hibernation itself is becoming dysfunctional. I managed, last week, to not go out of the house at all between early Monday morning (had to fill a script) until late in the day Friday (HAD to get groceries...). Given my practice of going out for coffee, which I partly started to make sure I DO get out, I realised I was going down the rabbit hole and I'd better jolt myself out of it. 

Hibernation is fine - within reason. Sometimes, it's just all too hard, and adding the social requirement to be reasonably civilised when you interact with others - particularly strangers - it's the sensible thing to do. But it can become a trap. 

I'm not naturally introverted. I can be shy of new people and new situations. But on the whole, I like being out and about doing things, seeing things, meeting people, etc. I like getting out with Dragon Dad prowling markets, going to art galleries, the cinema, window shopping, and the like. One of my red flags is when I find myself avoiding those things. Reaching the middle of the day still in PJs. Making coffee at home or asking Dragon Dad to bring me one on his way back from errands. Not making the phone calls or sending the emails I should (there's now a long list...including the blasted dentist as of this morning, because that same back tooth that keeps breaking has lost another chunk!). Not initiating chats with friends I spot online. And so on...

My body has been crap this last month. I started to deteriorate early in last month's infusion cycle, and then in the week prior, Dragon Dad did his whole appendix drama and the extra running around combined with stress tripped a flare. It took a long time to claw my way back from that, and it was really starting to feel as if I were in for one of those months when there's just no improvement. The last couple of days have been a bit better though, and that does help my state of mind. It's frightening and confronting when there's a really big, extended flare, because then it starts to feel like I'm hitting a new low spot physically that is an indicator of further losses that could become the new normal. The reality is I probably have slid further, but until I sort out some imaging and review results along with the monthly bloods (although, they're rarely conclusive) with my rheumatologist, that's just my gut feeling. Although, with a chronic, degenerative disease, it's not way off the mark to be thinking along those lines. 

So, given a couple of better days and articulating to a friend this morning that depression is reaching out its grabby little tentacles again, it's time to push myself to NOT get pulled under. 

Consequently, that friend and I have arranged to meet up tomorrow in the real world, to have coffee and a catch up. She's also been having a bit of a rough time lately disease-wise, so there's absolutely NO requirement to put on a face, thankfully, or try to explain - she gets it. 

I sorted through yarn and patterns yesterday, and started knitting a scarf. Given that my absolutely most favourite jumper reached the stage where it's obviously old and eroding on the edges, along with a favourite cardigan, I need to look at adding warm layers to my wardrobe with the yarn and patterns I have in the stash - because that won't require any financial outlay. So, the scarf, which is a quick project, will get me back in the groove again, and ready, when it's finished, to embark on a new jumper/cardigan project.  

I will find a Tai Chi group - that will hopefully not cost too much, because there's just no money at present for extras. It could be argued that it's not an extra, except that it will cost money, and anything outside the essentials at the moment is an extra. But I need to be moving more, and that is a good choice as it'll give me the exercise, as well as getting me out and involved with some new people. I did find someone fairly close by who teaches a fusion of Tai Chi and Yoga, but she's $25 per session. When I looked into Tai Chi in Sydney, the Tai Chi association charged $95 for a ten week term...so hopefully I can find something like that here. To that end, I've left some money from my last pay cheque in my account in case I can find an affordable group.

I will also email the cantor at our shul - finally. The shul has several choirs, and one of the things that was always on the drawing board with the move here was to get back to regular shul going, and get involved musically. I was a professional chorister at the shul in Sydney where we used to go. I've not been singing for some time now, and it's time I got back to it. I also need to sort out some regular drawing. The Tai Chi has priority financially, so the life drawing group I've found will have to wait but there's no reason at all not to be drawing at home and trying to find a market for the work - which will mean, hopefully, more income, and therefore more options for activities. 

So, have you seen what I've done here? Put a list of goals to meet out in the public domain as incentive to get them done! So, feel free to call me on any of them, if I don't report back soon to say I've got at least some of them in train... 

Meantime, the one thing I have managed to keep going is Fat Mum Slim's Photo A Day challenge, which I'm participating in on Facebook. It's great fun, it is social (I've added a new FB friend as of last night), and I'm learning lots. I also definitely now want a DSLR camera...!! With lots of different lenses. Although, I continue to be amazed and surprised by what's possible to achieve with an iPhone camera. I've just made up the collage of all my images from March (because I've taken tomorrow's photo already, and I needed something fun to do this morning...to get me past the black dog) and here it is for your enjoyment. I got fabbed - chosen as one of the images of the day - for the photo of my morning tea mug and novel (in the top right hand corner of the collage), which was a lovely surprise and boost. And now I have a list of things to get onto. How do all of you manage creeping depression?

Rheumatoid Arthritis - Infusion day plus one...

Back when I was first diagnosed, there were far fewer treatment options available - mind you, there were still many more than had been available not all that long before that! There were a few DMARDs (Disease Modifying Anti Rheumatic Drugs), but they were administered singly, whereas now, they're used in various combinations as it's been found that that's much more effective in controlling the disease. 

Move on another decade and a half, and well within the time when I wasn't seeing a rheumatologists, and the first of the biologics became available. These are now the most powerful drugs used to control RA. They're made from live human proteins, and they target specific parts of the autoimmune system in ways that interfere with disease activity - basically, they slow it down. I wrote a post about them for RABlogWeek last year which you can read HERE. 

I'm on Orencia. I started with weekly injections, but transferred to four weekly infusions, because I get a bigger dose that day. It has been good. It's definitely given me a significant improvement. I had my infusion yesterday, and it went well. It's hard, being needle phobic, having to have regular infusions, but the hospital where I go is nice, the staff are excellent, and they've been very understanding of my phobia and do everything they can to make sure everything goes as smoothly as possible to minimise any extra trauma.

Today, I have the headache from hell, which is a side effect I experience every time. I got it after every shot too, when I had those, so it can be argued that that's another benefit of the infusions, because now I just get it once every four weeks. It's a doozy. I feel as if I've got a massive clamp on my head, around my temples and eye sockets, and it's squeezing. Just nasty. The fatigue hits hard too - I crashed and slept for a few hours on the couch yesterday afternoon. And slept like a dead thing last night in between the times I woke up in pain. I'm still flaring - the flare that was tripped when Dragon Dad had his appendix emergency. So I went into this infusion in a bad way - pain meds upped to the max, still a lot of pain, and noticeable swelling. I'm sitting typing and am desperately trying to ignore my knees, which have skewers through them, twisting and turning, and my feet and ankles which are both burning and have awful pins and needles. So, I'm anticipating it'll be a good few days before I can expect any real improvement this time around.

I'm also starting to think that it's time to have THE conversation with the rheumatologist about whether it's time to look at changing biologics. This is a tough one. While the headache, fatigue, and sinus congestion (which I sometimes also get to varying degrees) aren't pleasant, they're doable, as far as side effects go. They could be much worse. I could be throwing up all over the place, or worse. And it is still having SOME effect. I have around two weeks in the middle of the cycle when I know I'll be doing OK. But the week leading up to the infusion can be dodgy as the beneficial effects of the drug start to wear off, and the week following can depend as much on how bad that last week was, as well as how bad the side effects are each time. So, it's highly unpredictable. 

I used to do better on this drug. There were some months I could get my pain meds down to one 50mg Tramadol SR for the day time. At the moment, I'm taking 150mg... And 200mg at night - so I'm pushing the outer limits of what can be taken. And while it helps, I'm by no means pain free. Last week, I was needing to top up with oxycodone. Add to that the deterioration in my shoulders, the now regular swelling and pain in my ankles that didn't used to be there, pins and needles in my feet - which suggest my circulation is being compromised, significantly more pain in my knees, and so on, I'm wondering whether it's the drug not being as effective, or whether it's a significant increase in disease activity.

It's a hard call. Given my ability to have extreme reactions to new medications, giving up a drug I know I can tolerate is a hard decision to make. Facing taking a new one is like facing stepping off a cliff. And then there's the issue of knowing exactly what's going on. IS it the disease getting much worse? And what does THAT mean? It's not something I let myself dwell on - because that's a pointless waste of emotional energy. But dealing with the everyday realities of a disease who's only known trajectory is that it gets worse, and having experiences that suggest that that's actually what's going on... That's really hard. And I don't know if I'm ready to face that. 

Relatively speaking, I'm still doing very well. I'm mobile, independently functional, and can do lots of things - and enjoy doing them. At the same time, I'm very aware that I don't feel very well at all most of the time at the moment. And that wasn't always the case. So something has changed. 

My next appointment with my rheumatologist is in May. And I have two more infusions before then. Anything could happen between now and then... 

Rheumatoid Arthritis - Flat Friday

You know when you have a reasonably good day, and get some stuff done, and you're all over how FABULOUS that is? And then you wake up the next day and it's all gone totally to hell in a handcart...? Especially since, although you got lots done, you didn't actually do anything stupidly physical that would over strain anything or push beyond sensible limits.

That's been my today. On a day when I'd usually do the grocery shopping, to prepare for Shabbat. Maybe make some challah. Some egg salad. 

Instead, I hauled myself down the road to do my blood tests - infusion on Tuesday - and then sat in my local (bless them for being right there opposite the doctor's surgery, and for having such excellent coffee) for the longest time trying to find the energy and focus to get back up, and drive the car the 800 meters back home... I was obviously there longer than I thought too, because suddenly there was Dragon Dad in front of me, en route to the hardware store, stopping in to check that I was there and OK.

So, I got home, and then managed to get through writing one of three work articles. Well, almost got it finished. By then Dragon Dad had got back from the hardware store with the supplies he needed to continue with the backyard Alcatraz he's been building to keep the littlest Siamese IN the yard (after discovering yesterday morning that she's been scaling all eight feet of it to go play with the builders over the back while they build the new house there). He had to keep going with that - small Siamese was driving us nuts being confined to barracks - but needed a work document scanned at Officeworks so it could be sent to the relevant parties, and could I possibly do that? For a moment, he hesitated and said not to worry, he'd do it, but I gathered myself and told him I could. And I did. And got back, made us both sandwiches, because it was well past lunch time. Then my stomach went berserk - because I'm flaring, flaring badly, so the IBS has to kick in too... 

I sat a bit, sipped a Coke hoping to settle the nausea, did a few runs to the bathroom - GAH. 

And you know what? THIS is what I totally hate about RA. That it can poleaxe you so comprehensively. I've been out today to do two very minor errands - in the scheme of things. I've written one very basic, short article. Made a couple of sandwiches. 

And I am EXHAUSTED. And I feel like shit. And I HURT. My gut is a mess. I can't think straight. And, I've done absolutely nothing to have caused any of that...it's just what my body does, because it's sick. 

Thankfully, we were on the receiving end of a lovely gift from Dragon Dad's brother and mother - a polystyrene box full of all sorts of lovely food that just needs warming, mixing, or a quick grill. SUCH a thoughtful thing. Dragon Dad hasn't been doing as much around the place since his surgery - the fence is the first big job he's done. So all the food shopping, cooking, organising, etc, has come down to me, and I've been deteriorating physically pretty quickly. So to have a couple of meals that required NO thought or real effort is a very special gift indeed. It means I have very little to do about dinner tonight.

So, at this point, I think it's probably time to close down the computer and relegate the remaining two articles for 'some other time', take the extra pain meds I've been putting off because that WILL be the end of my brain for the day, put my feet up, and just stop.

Self care, I believe it's called! 

Poncho - best ever local cafe

International Women's Day and Feminism

My mother was born in 1934. She was a teen and young woman through the 50s. By the time the Women's Movement had hit full swing, she'd been married twice and had two children - my brother and I - had worked, both as a single woman and married with children. She was an intelligent woman. She'd won a scholarship to a selective Sydney girl's school, but had to leave after she achieved her Intermediate Certificate because the scholarship funding ended at that point, and her father couldn't afford to pay the fees to keep her there any longer. She went out to work, finding herself doing clerical work in a wide variety of places. She took herself to theatre school in the evenings, learning elocution to rid herself of her 'working class' accent. She associated with other theatre people, other creatives - Sydney's Bohemian crowd. She reinvented herself long before 'reinvention' was a thing. She shared a flat in King's Cross with the woman who became her best friend, and my godmother. They had a goat, and a kitten that chewed the buttons off their pyjamas. They gathered with others who drank cheap flagon wine while taking turns to recite stanzas from Omar Khayyam's Rubaiyat. My godmother, from Sydney's North Shore, drove an MG. My mother dated a young man who rode a motorbike.

Despite all these more - for the time - unconventional aspects of her life, my upbringing was not unlike hers. It was me in the kitchen helping get dinner and clear away afterwards, not my brother. It was me that was 'shushed' and told, 'Don't be so angry' - read 'loud' - or, "Don't be so upset,' - still read 'loud' - when I had grievances. It was me who got shoved into school subjects that were more 'suitable', and me who ended up starting a course at university that wasn't my first choice - because apparently I couldn't know what was best for me. 

I honestly don't think she thought she was being unfair. Her own mother left them when she was 12, leaving my mother to parent her younger siblings while their father worked. So much of the way she parented was about making up for what she'd not had. So much of it was also about making sure, I think, that I'd be 'acceptable' - because perhaps, like many children in her situation, she felt some sense of misplaced responsibility for her mother leaving. 

After I dropped out of that university course at the end of my second year, I got a job. Then I decided I'd like to move out of home and share a place with someone, as you do. Mum was hugely opposed to that and made it very difficult. I did it anyway. She didn't like it. But when I got engaged, far too early and far too fast, to a young man who was still at uni, and planning on an academic career, there wasn't a single protest. It took me years to realise - long after I'd left him - that that was different to me leaving home, because marrying him meant I'd have someone to look after me. Only he didn't. 

My early engagement with feminism dates from that marriage, and discovering that I had to fight for even the most basic things, because he assumed that as a married woman I was there solely to look after HIM and our child. When I scored high distinctions in a language class I was doing - which required nothing of him because I organised the childcare, doing the drop offs and pick ups - I looked into arts degrees at the university there, thinking to go back and do a different degree, one focusing on languages for which I had a clear aptitude, his response was, 'But who's going to look after the house, and the washing, and the child?' He was doing a PhD at the time, and had a flexible timetable. It SHOULD have been possible to easily manage the household, the childcare, and our respective studies. But it clearly wasn't even going to be considered - by him. 

I have conversations now with Dragon Dad, two marriages, hefty stints of sole parenting two boys, studying, working, and just living later, about feminism. Like many, on the surface, he sees it as women fighting for the sake of fighting. At the same time, he is ignorant of much of the history. It's taken me teaching him about basic things like women not being allowed - historically - to own property, that THEY were, in fact, the property of fathers and husbands. Just recently, after seeing the film Hidden Figures, about the African American women who worked as mathematicians at NASA in the early days of the American space program, we talked about where women sat generally, in the workplace, at that particular point in time. That there were positions from which, when they were married, women were fired. And others, like teaching, where they could still work as married women, but once they got pregnant, that was the end of their careers as teachers. He was horrified. We've not had the conversation that will enlighten him to the fact that in the Australian states of New South Wales and Queensland, abortion is still a criminal act. That it isn't prosecuted doesn't change the fact that antiquated laws around abortion still stand in those states, and a recent vote to change the Queensland laws failed. 

In many ways, he's very much on the side of equality, but in equally many ways, he has absolutely no understanding of the daily experience of women that fuels the fight that so many of us continue to wage. The cat calling. The put downs in work environments. The expectations that we look a certain way, wear certain clothes, and negative consequences when we don't comply. The passing over for promotion, even though we may be better qualified. That we are paid less than men for the same jobs. The impossibility of taking our safety or granted when we're out. The fear of angering men - whether they're our partners, fathers, brothers, or strangers - and the potential consequences. Our frustration when we try to explain that these experiences are NORMAL for us, even though they're just plain wrong. And their inability to understand that we're NOT fighting just for the sake of fighting. And we're not angry about the status quo just to be angry. And we're not anti-men. 

I am a feminist because feminism is about inclusivity. Feminism demands equal opportunities and equal rights for EVERYONE - men, women, children, regardless of gender identity, sexuality, nationality, religion, etc. I don't want anything 'special' for myself and other women. I just want the same opportunities to be who I am and do what I do as men have had historically. I want to be paid the same. I want to be as safe on the streets. And I want that acceptance.

 

Rheumatoid Arthritis - When You're Flaring, or Just Can't be Bothered Cooking

So, for followers of the Facebook page, you'll know that this week did not go as planned. Instead, Dragon Dad ended up in hospital with appendicitis. He's home now, recuperating from keyhole surgery to remove it - no keyhole surgery when I had MINE out years ago, and he thinks HE'S having a rough time... However, all the extra stress, lack of sleep, and running around doing the things he'd normally do as well as the stuff I do...and yes, I'm flaring. So, although he's in that picky stage of not feeling well, and wanting 'something tasty' (which can mean a whole lot more work than something basic) or stuff just to pick at rather than an actual meal, it's feeling like a WHOLE lot of work for me. I thought it might be timely to post some of the basic food strategies I maintain at home to cover times like this - and remind myself or them at the same time!

There are a few things that underpin how it works. Firstly it's what to keep on hand, and then simple things to do with those stores and the odd fresh addition to make things that are easy, nutritious, and don't require endless running around - that's the theory anyway!

Things to have in stock

In the pantry:

• Tiny tins of tuna, plain and flavoured (they're 85gms I think)
• Canned chickpeas, cannellini beans, kidney beans, lentils, etc
• Crackers - whatever kind you like. I usually have Saladas and/or Saos
• Rice - Jasmine, Basmati, short grain.
• Noodles - regular pastas (spaghetti and something short like spirelli or penne), rice vermicelli, dried egg noodles
• Stock - I keep litre and 250ml cartons of Campbell's Real Stock. Always have chicken and veg, and occasionally beef
• Spices - a very little spice can go a long way to give something very simple a lift

In the fridge:

• Olives
• Cheese - I always have cheddar, parmesan, and usually one soft cheese - the latter depends on budget. Spreadable Philadelphia cream cheese if money's tight, or a soft goat's cheese if we're more flush
• Eggs
• Dips. We always have a tub of hummus in the fridge, and sometimes others as well
• Range of veg - carrots, cucumbers, tomatoes, capsicums, zucchini

In the freezer:

• Skinless chicken breasts
• Frozen peas - if you're not eating them, they make perfect emergency icepacks
• Piece of steak
• Mince

Vital kitchen equipment:

• Food processor - grating by hand hurts. Food processors do it in seconds. My food processor is the one thing I spent real money on - it's not worth buying a cheap one
• Stick blender - for small things when you don't want to get the processor out

What to do with these things

Tuna I've been known to just open a can of the flavoured ones and eat it with a spoon. Otherwise, good on crackers, dropped into a salad to add protein, rolled into a pita with some salad veg and/or cheese, or stirred through cooked pasta and topped with cheese.  
Canned beans and stuff Chick peas can be gently toasted in a frypan with a little oil and a mix of spices - try cumin, coriander, paprika, tumeric and a little salt and pepper. Nice warm, but can be kept in an airtight container for a day or so for a snack.
Cannellini beans can be mashed with crushed garlic, parsley or fresh oregano, salt, pepper and a little olive oil to make a quick dip.
Drop any drained canned beans or pulses into a salad for added protein.
Make a quick salad with drained canned lentils, roasted beetroot or pumpkin (can be bought pre-cut), soft cheese, greens and light dressing.
Chickpeas and lentils can be stirred through steamed Basmati rice and topped with fried onions for a simple meal, or side dish. 
Rice First up, steamed rice can be divided and frozen in smaller quantities, so always make a full pot and do that, then you have it ready cooked and just requiring defrosting. 
Quick rice pudding (when I'm on my own and feeling like crap, I make this for dinner) 60g short grain rice, 600ml full cream milk, 30gms brown sugar. Stir together in an ovenproof dish and throw it in the oven at 150C for 2 hours. Check from the 90min mark as, depending on your oven and whether it's a deep or shallow dish, it could take longer or shorter to cook to a creamy consistency.
My mother's fried rice. Start with some cooked jasmine rice - one cup raw will give you two cups cooked. In a large frypan, saute one sliced brown onion until soft, add 1/8 finely shredded cabbage (both can be done in the food processor) and continue to saute til soft. Add 2T sultanas, and 1T pinenuts, stir through until sultanas are plump. Add rice and stir through gently to break up the clumps. Add 1T light soy sauce to moisten. You can add an omelette sliced into thin strips for added protein. ALWAYS make more than you need - it keeps in the fridge for a few days and reheats well.
Using the Chinese method for steaming rice (I'm lazy and don't rinse it, and it still works just fine), add a mix of sliced veg on top of the rice just before you put the lid on for the ten minute steam (I only ever steam it ten mins). Turn off heat and leave lid on for a further five minutes. Remove lid, add a splash of Kecap Manis (sweet soy sauce) and stir through - steamed rice and veg!
Noodles and pasta You can keep cold cooked pasta in the fridge in a sealed container for a few days quite safely and microwave or steam to reheat. It also freezes.
Heat a pack of consomme or stock (the 250ml one for a single serve). Drop in some vermicelli, blanched veg, and sliced poached chicken - almost instant chicken noodle soup that's WAY better than the packet stuff.
While pasta is cooking, combine in a bowl a drained can of tuna in oil, a couple of knobs of butter, a handful of grated parmesan (buy pre-grated), one beaten egg, and some minced parsley. Drain pasta, and immediately stir mix through hot pasta off the heat. the residual heat will cook the egg and melt the cheese and butter, forming a creamy sauce.
Leftover pasta can be gently reheated in a pan with some butter, then scramble an egg through it and top with grated cheese for a quick snack - one of my guilty pleasures!
Eggs The ultimate lifesaver when you really don't feel like eating but know you have to...
Keep a bowl of hard boiled eggs in the fridge. They'll keep well for a few days. Use for snacks, slice one onto crackers or toast, add to a salad - the options are endless. On really bad mornings, I'll peel and eat one while I have my tea so I can take my drugs.
Combine in a blender with milk and a banana and/or berries for a morning smoothy - or just a drop of vanilla and some honey if you don't have the fruit handy.
Even cooking eggs doesn't take much effort - and scrambling them is easiest to make and eat.

Chicken breasts While they CAN be a bit pricey, they can also offer some of the easiest options to ensure you're getting enough easily digested protein. I keep a container of poached chicken breasts in the fridge and use them for all sorts of things.
To poach... In a wide, shallow pan, combine a litre of chicken stock (from the pantry), a sliced lemon, garlic cloves you've just cracked with the skin left on, a few peppercorns if you have them, and sprigs of fresh thyme if you have them. Bring to boil. Add chicken breasts in a single layer - the pan needs to be deep enough to cover them. Bring back to boil, and boil - covered - for three minutes. Turn off heat and leave in the liquid with the lid on for 15 minutes. Remove and drain and they're done. The stock can be strained and frozen to use later. Chicken can be eaten hot or cold. We slice it into salads, sandwiches, soups, etc. Dragon Dad's favourite meal at the moment is cooked rice, slices of poached chicken, a serve of pickled cabbage and some hot sauce...
Sausages and mince 
Grill or fry sausages gently, and drain well. Store in an airtight container in the fridge. Use as is to snack on, or for sandwiches, or sliced into a salad. 
Make up small meatballs - Google for recipes, there are thousands online, but I can recommend Yotam Ottolenghi for various styles of kofte. And get the kids involved - they'll have a ball (see what I did there?!) rolling them into golf ball sized balls. Then fry or bake - I usually sear then throw them in the oven to cook through. Drain, cool and store in airtight containers in the fridge and use as you'd use the sausages. 

Obviously, some of these things require more energy and preparation than others. They also very much reflect our taste and food preferences. But they should serve to offer ideas and jump off points that can be adapted to your taste and energy levels. Tonight, because I'm flaring and Dragon Dad wants 'something tasty', I'm making mushroom pizza - NOT my usual pizza with the homemade yeasted bread base, the fast easy version...with Lebanese bread from the local bakery for the base, ready made passata, and ready grated mozzarella. the only thing I have to 'make' are the mushrooms, which I precook in olive oil with garlic and thyme. Lots of short cuts, but very little compromise on flavour - because there's no reason not to eat well, even when you're feeling crap.

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...