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...

 

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.

 

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 drugs...so 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 junkie...so 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!

Rheumatoid Arthritis - working the systems...

Remember my recent post, when my chemists were absolute heroes? Read it HERE. Well, following up on that, they called me last week to let me know that the drug had been ordered, and delivered, and they were holding it until I collected it.  

 

My next infusion is due next Tuesday. In Sydney, I had my infusions at a big public hospital, and once referred there by my rheumatologist, the making of appointments happened within the infusion unit. Costs were taken care of by Medicare, so all I had to do was periodically flash my Medicare card, and surrender my appointment card for updating.

HERE, I'm working via the private system. I go to a private hospital for the infusion and am admitted as a day procedure patient - for which my private health insurance picks up the tab. The hospital and staff have been great, as has my insurance company. The only time there's been a glitch was the last infusion with the stuff up from the drug company.

Until now. I had a sudden niggle the other day that because the doctor had booked me in to the hospital and set up the appointments, and it was private, and that this month is the first dose of the new prescription (they last six months), unless there was a standing order for the doctor, there might not be a booking for me on Tuesday... 

I called the doctor's rooms last week, and got no one. I knew he was going to be overseas over the break, so assumed that there was no one in the rooms. Made a note, and tried again today and got the receptionist. She went through my file but couldn't find anything. So I called the hospital, which involved a lot of being put on hold, and then eventually waiting for a call back. That's just happened.

There's no standing order. I do need another set of appointments to be set up. That has to be authorised by the doctor. The infusion is due on Tuesday, and he'll be in his rooms - at that hospital, as it happens - but not until the afternoon on Tuesday. So that's the first time he'll get the note asking for the new run of appointments, which means the likelihood is I'll have to wait until Wednesday for the infusion. 

GAH!

Ostensibly, it'll be a day late. But due to last month's debacle, that one was a day late so Wednesday will be the exact four week mark. So it's no great drama. I'm just kicking myself that I didn't think of it last month, before the doctor went away, when a simple phone call would have been enough to rectify the situation. And I'm also deeply thankful for when the infusion falls, and that it's going to be near enough. BUT it's been a stressful couple of days of not knowing. And stress isn't a good thing in combination with an autoimmune disease.

Systems. From place to place they can be very different. I need to be on top of figuring that out, in amongst all the other things I do to manage this disease. And people wonder what I do all day?!