Wednesday, 23 May 2018

Elegy for Gab

It's been absolutely forever since I posted here. Initially, there was just too much going on, and a lot of it wasn't very good. It all got quite overwhelming, to the point that there was just too much to write about so I didn't write at all. And then, as things eased, I didn't know where to start to sum it all up and get back to posting, so again, I just didn't do it. So, perhaps that post - a summary - is for another time, because today isn't that time.

Today I want to write about a good friend of mine who died suddenly last Friday morning. Her name was Gab - short for Gabrielle...a name she didn't feel comfortable wearing, and a name the rest of us had trouble making stick to her. The diminutive though, was perfect. 

I met her online, in the photo group I've been posting in daily since the beginning of 2017. I've written about that a few times: and the daily focus it's given me, the re-awakening of my creative juices, the challenge of developing my photography skills when my only camera is the one on my iPhone.  But the most important, and surprising aspect of this activity has been the people. I didn't expect the people.

I've been on Facebook since 2008. I've had the predictable experiences of reconnecting with people from my past - OMG all the people from my school days who I wasn't friends with, who suddenly want to be my friend... What IS that?! Connections with various people from the present time - friends and acquaintances, some who live far away, and others that I see regularly. And then the friendships that develop via different interest groups, and those I've been able to meet in real life, face to face. Some of those encounters didn't amount to lasting friendships, any more than some of the online ones. But some did.

Gab was one of those. The photo group is ginormous. Currently, there are 26,177 members. Not everyone is active all the time, and not everyone posts every day. But enough do that my FB notifications can go crazy just from that group, let alone any other activity, and it's easy to feel quite lost among such big numbers. Early on, I noticed that there were lots of small groups, 'tribes', of people within the mass. People who'd connected particularly for any number of reasons. I was a bit envious of those folk. Reading the banter on the comment threads showed just how much enjoyment there was in contact at that level, and it became clear that there were some people that were managing to connect outside the group, on the ground. Photos of PaDster (Photo a Day, PaD. PaDster being our nickname for participants in the group.) meetups always drew loads of comments.

And then it happened. Over the course of a month or so, via comment threads on particular photos, a group of six of us grew closer, drawn to each other by the photos, and then more so by the conversations in the comment threads. The The Catsuit Gang was born. Six women. Different ages, different backgrounds. Two in America - on opposite sides of the country. One in Germany. Three in Australia - two in Melbourne, and one in northern Tasmania. The two of us in Melbourne organised a meet up - that was easy. Lots of nerves. Lots of, 'OMG, how will I recognise you?' - directed at me, because I rarely have photos of myself online. We did the 'sensible' thing and met in a neutral space, a local cafe. Sensible, cos that's what you do with online people, right? Because they might be nutters. Only she isn't a nutter. She was as she is online. We met up a few more times. And then the great day came when the Tasmanian Cat was going to be in Melbourne and the three of us could get together on one day of her trip.

It was as it had been in the group chat. Gab was exactly as she was online, only more so. We spent that afternoon talking non-stop and laughing so much. It was SUCH a good day. We drank loads of tea, ate good food, told stories, laughed lots, and just enjoyed each other. The photo I've included in this post is from that day. I posted it today in the FB group for today's prompt, 'a really good day' and the edit of black and white with a splash of colour is for a theme I'm doing with my other little tribe for this month.

Gab was an amazing woman. Not well, physically, she struggled with a number of chronic conditions and illnesses, including anxiety. She valued family and friendships immensely. She was possessed of great commonsense, and always seemed to know exactly what to say when one of us was struggling with something. She had a wicked sense of humour. She was a truly gifted photographer - although, I'm sure she'd argue with that. During that trip to Melbourne, her photos changed as she focused on photographing Melbourne itself. She found the guts of what Melbournians recognise as their city, and did superb edits, knocking back the colour just enough for the shapes and subject matter to really shine without the colour being a distraction, but with enough richness still there to be immensely pleasing to the eye. She had a knack for observing and capturing the human condition, and there were some brilliant 'stalker shots' of strangers going about the the business of their day. 

At different times in her life, she'd followed various creative pursuits. She'd crocheted professionally for a while. She could draw. Wrote wonderfully. She never settled on one thing in particular though, always being hungry for new interests and things that would challenge her. She loved to travel and see new places, and we all enjoyed the photos she posted of different places, and the accompanying, sometimes sidesplitting, stories.

She brought something rich and unexpected to my life, as part of our little gang. I think we all feel that. The online experience can be bizarre. People aren't always the way they present online. Gab was. She was an object lesson in how to be authentic online, and be consistent with who you really are. Meeting up with her, with the other Melbourne Cat, that day felt like we'd passed through some magical portal and instead of chatting online in the group, we were in the same space - it felt the same, only in real life.

When she knew she was coming last month, we talked about meet ups. We planned a day at Ripponlea House, one of Melbourne's historic houses that's open to the public. It's a photographer's dream. We planned to pack a picnic for lunch, to save funds. We thought to start at the on site cafe to fuel up with caffeine, then wander and take photographs while we caught up, and then picnic. That was the plan. Life got in the way. Things changed that day, and in the end, we relocated to my house again. Gab came earlier in the day, and then the other Cat joined us for dinner. Dragon Dad got to meet her this time too, and loved her. Said she was hilarious - which she was. When she headed off at the end of the evening, she was talking about her next trip across, and things we might do. And as always, we talked about a grand gathering of the Catsuit Gang. Quite where, geographically, has long been a puzzle, given how widely scattered we are. And the money of course, as none of us are millionaires. Sadly, when that gathering does eventually happen, we will be five, not six.

But Gab will always be part of our gang. She's left us with a rich legacies of 'Gabberisms.' And as we all trawled back through our conversations with her, on comment threads, and in various chats - group and one on one - we found many treasures. Perhaps one of the most meaningful, particularly for me as it was a comment in response to a post I did with a photo of my mother for the prompt 'I wish,' she wrote this:

What a special shot of a precious photo. It's beautiful. She was beautiful. This will sound so wrong right now on this post but here goes. Tears, sadness and regrets are probably not the way to remember her, lovely Karen. While those feelings will almost certainly remain, holding her memory in the joyous and simple times can be helpful. You were lucky to have her for as long as you did. To know her as a woman and person as well as your Mum. I never got that chance. Only the good die young I suppose.
Try turning it a little. Let the grief and sadness turn into thankfulness that you had her in your life at all, even for a short time. While the pain never really heals, you can use it to become the person you know she wished for as a daughter.
Maybe I'm a little too practical but I can't see that any parent wants their child to feel the broken soul feelings that I sense in your words hon. She will not be diminished if you can smile and laugh when you remember her nor would she be content to know you feel guilt for not foreseeing the impossibly unexpected.
It's been 37 years without a Mum for me and while I might wish things had been different, they weren't. I can't change that or it's circumstances but I can remember her with a life and laughter that honours her existence in love. 😊 💛💛💛
Wear white to my funeral and celebrate for I am going to a better place and it is you who will remain in this turmoil called life. 😊
The emojis won't go smaller, and they make it messy, but I'll leave them, because she put them there. That smiley face and the yellow hearts were her signature emojis, 'To me they epitomize my existence. Live, love, smile and be happy. Love and laughter have always worked well for me!' 

So, as sad as we all are, we're only too aware that she'd be very cranky if we sat around weeping for her. Friday, when we heard the news was such a dreadful shock, and we were all in pieces. Today, knowing she's being laid to rest and none of us could be there, has been very hard, and I've been teary, so I'm hibernating at home. But to honour her, we'll all have to pull our socks up and get on with living life as it comes, finding the humour, as she would have, and looking after ourselve and each other. 

Zichrono livracha. Gab, you will be missed. 
That first Melbourne get together. Photo by Gab. Edit by me.

Thursday, 23 November 2017

Rheumatoid Arthritis: When things change

It's official. Orencia is failing for me... I've had a month from hell already, and at day 4 of this month's infusion cycle of this last dose, all the side effects have kicked in - headache, now lessening a bit, and snotty sinuses, plus two afternoons completely crashed on the couch - but no noticeable benefits that I can feel. Still in quite extraordinary pain, and at the max level of analgesia that I can take and still drive, hold lucid conversations, and function, albeit minimally...

Saw the rheumatologist on Wednesday, as scheduled. This last three months since I last saw him has been very much a monitoring period, so I don't think he was entirely surprised to see I'd deteriorated, but I do think he was surprised by just how much. So there was no hesitation on his part about moving straight to the conversation about WHICH biologic to try next, once he'd had a good look at my joints which are all noticeably swollen and red - and, as he discovered when I hit the roof, painful! 

The upshot was that an application for Xeljanz has now been sent for approval by the Prescription Benefits Scheme (PBS). There shouldn't be any issue with the actual approval. I just have to hope that there isn't any backlog to hold up processing mine. It should be in my letterbox in two weeks - that's what they always say...but there can be delays sometimes. I can't start taking it until I reach December 21, which is when my next infusion would have been due, but I want it here, and the script filled, ready for that day...because if, as it seems so far, I'm not going to get any benefits from this last Orencia infusion, I'm in for a month that is going to be very, very difficult. 

And then, Xeljanz. It's the first oral biologic to hit the market, and was added to the PBS lists just over two years ago. It's been in use overseas for quite a bit longer - around seven years now, I think. It's a daily tablet - so no more needles, YAY. Great news for a needle-phobe like me. And no more being tied to a monthly hospital admission which, apart from the timetabling of that, also put me into a hospital environment, isn't the best place for someone who's medically immune suppressed. A daily dose also allows some control should there be any drastic side effects - because I can just stop taking it and have them, hopefully, reverse quickly. And that's a concern for me starting any new drug, as history has shown that my body is extraordinarily sensitive to medications, and in the past I've had some severe and unusual side effects from various drugs, some of which have been potentially dangerous. Also on the up side though, is that Xeljaz doesn't - from what I hear anecdotally - tend to contribute to weight gain the way Orencia does, so it might be that I will finally be able to start shedding the kilos that have stacked on in the three years I've been on Orencia. There are frequent reports of gastric upsets with Xeljanz - that's a worry...but for most people, those do subside as the body adjusts to the medication. It can - being oral and being processed via the liver - be a problem for liver function, so that will be monitored, as will my cholesterol levels, because it can also affect those. And right now, my cholesterol is low - so I can eat everyone's cheese - and I don't want that to change because, cheese, people! However, all those worries can just sit in a box until I've got the script and the medication. For now, I just need to get through this next month. 

As I said, my joints are now very painful - constantly. My hands, wrists, feet and ankles are noticeably swollen. I have a running joke with a few friends that relates to a common question we get asked by doctors examining us - 'Can you make a fist?' Well, I can't, but I can make a damned fine set of binoculars...! For those readers who don't have RA or another form of autoimmune arthritis, indulge me for a moment and stop reading, so you can clench your fists tight, and then open them out big enough that if you look through them, you have a clear line of vision. That's how far I can currently close my hands...there's too much swelling for me to make an actual fist. I'm not wearing any of my rings either, because most of them won't go on - those that do won't come off again easily. 

What's the pain like...? It's hard to describe pain to someone else, particular someone who's not in pain. There's a constant dull ache, a hard dull ache...if that makes sense. That's pretty much everywhere...and it's exhausting. I can feel it no matter what I'm doing. As soon as I move, the skewers start... Hot, painful jolts that rip through the joints. I'm walking with care, I'm thinking about how I'm going to sit down, get in or out of the car, get up out of a chair - thinking and planning each step of any large movement. 

This has been going since the infusion I had before the one this week. I'm tired. Desperately tired. Pain is exhausting. I'm not sleeping well. I'm not sleeping enough. I'm a bit stir crazy, because I've not been out much. I've been doing our grocery shopping in small bites rather than one big shop. And yes, I could order online, but the supermarket websites are really clunky and the times I've done that I've inevitably ended up with odd things that aren't the things I thought I ordered... Plus, leaving the house means I also stop and have a coffee, talk to the people in the cafe - human contact and a really normal activity. I need those normal things...

Yesterday though, I went with a friend into the city to meet another friend for lunch. All three of us have autoimmune diseases, so none of us had to put on a 'game face' - because we all get it. My friend who lives locally picked me up and we drove to my nearest railway station and took a train into the city. The place we were meeting is alongside the city station so that made it easy. And we had a fabulous afternoon. We both both crashed early last night and today, we're both absolutely knackered - how the third musketeer pulled up this morning, after having to go on and work last night, we don't know. But, as Dragon Dad astutely mentioned last night when he could see how exhausted I was, we had a great time together, the three of us. Lots of laughter, lots of stories, some good food, and wine, in a very pleasant setting - SO worth the effort and extra pain and exhaustion. 

Small, simple things that are just such normal activities. Normal activities that can start looking like impossible mountains when you're as sick as I currently am. But mountains that CAN be scaled if the right things are put in place, to make them possible, and to not create further fallout afterwards. But normal is good - it reminds me that I'm still here, still me, even when I'm feeling utterly crap and life is beginning to feel small... So, that's the mandate until I can start the new drug - to schedule regular NORMAL social activities when I can so that even if this month is as difficult as the last one has been physically, there's some light, and laughter, and good people, and normality in the face of this crappy disease.
Three arthritic chicks doing lunch!

Really must remember to put on some makeup before I go out socialising next time, and perhaps consult an expert on doing something about what appear to be my non-existent eyebrows!

Tuesday, 14 November 2017

The majority of people in Australia have said YES!

It's a big day here in Oz! Finally, thirteen years after John Howard's coalition government voted to change the Marriage Act to define marriage as something between 'a man and a woman,' the people of Australia have shown that they support same sex marriage. My Facebook feed has been a happy place - so many photos, rainbows, hearts, happy faces. 

However, there is work yet to do. While the result - 61% saying YES - is excellent, it isn't binding. This should never have been conducted via this non-binding public 'survey. The campaign unleashed three months of deliberate scaremongering and misinformation from the 'No' side. Those on the 'Yes' side were accused of trying to force the issue too, at times. My gut says to me that those occasions were more likely born of years of frustration, watching other Western countries around the world creating legislature that made marriage between ANY adults possible, while Australia dragged its heels, the religious right factions within several generations of governments blocking any useful discourse that could have enabled the government itself to vote on changing the law - as should have been the case. But real harm has been done to members of the LGBTQIA community and their families as a result of the viciousness of the 'No' campaign. That is reprehensible.

In the wake of the announcement this morning of the 'yes' vote coming through in the majority both the prime minister, Malcolm Turnbull, and the leader of the opposition, Bill Shorten, have committed to get legislation through 'before Christmas' that will resolve this once and for all. Turnbull, of course, has a vested interest in getting the job done - his government is currently in the minority, due to the dual citizenship issues among his members, the polls show a continued swing in Labor's favour against him, and if he doesn't push the legislation through, it will almost certainly contribute significantly to a loss in the next election - particularly as Bill Shorten has already used promises to enact a change in the legislation at the last election, and will certainly use it again if we go to the polls without the law being changed. 

And so, regular readers might be curious now, as to why I'm writing this post. It's not about RA, it's not about parenting, it's not a why has the Dragon Mother suddenly decided to dip her toe into politics, you may be asking. What, if anything, has this event got to do with her?

Personally, for myself and Dragon Dad, it has absolutely nothing to do with us. We're not married. That may change in the future. And there's nothing in the laws of the land that would prevent that happening. When - WHEN - this legislation goes through, that will still be the case. It won't change a thing for us. 

No.1 son is in a long term relationship, also not married. But, should he and his girlfriend make a decision to get married, they too - like us - would have no legal barriers. The Stepson has recently ended a long term relationship, and is footloose and fancy free, for now. But again, should he meet a girl and decide he wants to marry her, that will be easily achievable. 

No.2 son though, is gay. He came out to me nine years ago, when he was seventeen. He was combative about his announcement - fairly typical of him, when feeling vulnerable. He introduced me to an early boyfriend on one of my visits back to his hometown - again, in a combative style, which rattled the boyfriend at the time... I don't know if he's currently in a relationship or not, as he is still not communicating with me - for some background to that situation, read this post. If past experience plays out, that will eventually change and hopefully we'll be back in contact. 

However, as the law currently stands, should he be with someone and wanting to marry, he can't. And that isn't right. Why should one of my sons be able to marry and the other one not? There's no good reason for that - none at all. 

So, today, I rejoice, along with those in the LGBTQIA community. I rejoice with them and for them. Sooner or later now, these laws will be changed, and people's gender preferences and sexuality will no longer be a barrier to marriage, for those who wish to be married. Among them is my son, who will have the same freedoms as his brother, and his parents. 
One of the more beautiful rainbows I've seen over my backyard lately

Tuesday, 17 October 2017

Rheumatoid Arthritis: What to do when you flare

RA is a nasty, unpredictable beast. It doesn't play fair - ever. Just because you're sensible about your activity level - not too much, not too little, just right... - it doesn't mean the disease will behave. Likewise, you can eventually find a sustainable drug combination, including good pain management, and you'll STILL flare. It really, really sucks. 

So, what is a flare, and what can you do when one hits? 

Flaring is the term we use when the disease does a sudden ramp up in activity - resulting in increased pain, fatigue, that fluey feeling that isn't flu, extra dryness if you're prone to dry eyes and/or mouth, possible skin irritations, and any number of other disease symptoms. Sometimes a flare can give you a bit of warning with symptoms increasing over a few days. Other times - as happened to me on Sunday - you go to bed at night, and then wake up the next morning with one on full bore and just getting out of bed poses your first obstacle of the day. 

What can you do?

First up, refer to your pain management plan. For me, since my pain management review with my GP a little while back (you can read about that HERE), that  meant upping the dose of Tramadol in my morning meds from 50mg to 100mg to boost the overall coverage, on top of what the Fentanyl patch offers. I waited for that to kick in before I reassessed, as I have Endone on hand as well - short acting - to add another level, if required. It was, so I took that mid morning, and later in the day. And again at bed time, again a few times Monday, but didn't need it yesterday or today, although I'm still using the extra Tramadol at this point as the flare is slowly - oh SO slowly - easing. 

Try - and this will sound counter-intuitive - try not to just go back to bed. Even though it hurts to move, if you don't move at all, you will seize up, and that just makes things MUCH worse when you do have to move. I did eventually park myself in a nest of pillows on the couch by Sunday afternoon, again Monday afternoon, and yesterday afternoon. BUT, I got myself up, showered and dressed - with significant rest periods between all of those things - each day. Dragon Dad brought me coffee from down the road on Sunday morning - I couldn't face the drive there - all 800m of it...that's how bad I was at that stage. Monday, I had to get myself to the GP for a new Fentanyl script, and then across to the chemist to pick it up. THAT little excursion was planned with military precision, and included a rest stop at my local cafe before getting in the car and driving to the chemist to get the prescription sorted. I crashed for the rest of the day before making a very simple dinner for Dragon Dad and I... Today, I've been up all day, I've been out, I've managed to do some work that came in - allowing for the fact that this is all extremely low key activity. I didn't get to tai chi last night - I knew by the end of the day that a 6.30pm class was just not going to be possible, and I'd have had to have slept in a corner of the school hall because driving home afterwards would have been a no go! So, do get up and keep yourself moving gently through the days. Do some gentle stretches, if you can, to ease potential muscle spasms.

Eat well. Again, there's effort involved, unless you've got the funds to order in meals for a few days. But there are simple ways to maintain your nutrition that don't take too much effort. Read this post for some of my hacks and strategies. Money has been exceedingly tight for some little while now, so I've been pushed right to the extreme edge of inventiveness and ingenuity to manage low effort meals that are sufficient to feed Dragon Dad who's working very long, tough hours and really needs good solid meals that are enjoyable as well as sustaining. 

Say no. A big flare is when you cancel, or say no to requests from people to do stuff. You DO need to rest and look after yourself. It's the time to ask for help too - if there's something you do have to do that can't be rescheduled, call someone and ask if they can drive you - if you're taking a lot of extra analgesia, that may be essential. If you've got someone in town briefly and you'll miss them if you don't make the effort to meet up, see if they can come to you - remember, they're not visiting your house to inspect your housekeeping, they're coming to spend time with you. If people offer to help, say yes, and give them specific things to do that will help you manage your day - ie, bringing food, transport, minding kids, etc. 

Leave the housework - from years of experience, and living with kids, I know that if I don't get to household chores one day, they will wait patiently until the next day, and the next and the one after that! The fly in the ointment for me with that one, is that if it's something that really gets up Dragon Dad's nose, he'll quite likely do it - he can't handle the dishes sitting around, for instance...but won't stack the dishwasher, so he ends up washing them by hand! 

Lastly, DO NOT feel guilty. You didn't make the flare happen. You didn't, for that matter, cause your disease. You can't help flares - they happen, it's part and parcel of RA. So you have nothing to feel guilty about. And anyone who tries to make you feel guilty is not someone you need to have around you - during a flare, or just in general.

The bottom line is to look after yourself - during a flare, you need to coddle yourself, because you'll be feeling like crap. Just go gently, binge read, catch up on TV you've missed, watch a movie, drink a lovely glass of wine with your dinner (it'll help stimulate your appetite!), and wait it out. I'm on day four, and the flare is easing. Still more pain than usual, and I have absolutely no stamina, but it's better than it was on Sunday and Monday, by a long way.

Thursday, 28 September 2017

RABlog Week 2017, Post 4: Hobbies - how they may help living with RA

Hobbies – Hobbies are healthy or maybe they are not? What is your hobby and how does it help you with your autoimmune conditions? If you do not have a hobby imagine a great hobby for a person dealing with RA.
Hobbies are one of those things that get bandied around within the chronic illness communities as a - by and large - good thing. In theory, they give you something positive to focus on to distract you from your disease and the difficulties faced day to day. It's something I struggle with, as a concept, because I'm not a big 'hobbies' person, perhaps because, many of the things people do as hobbies are things I do, or have done, professionally. So for me, they're not hobbies. They are, though, things that give my life meaning. 

I'm a writer. Apart from this blog, I write professionally for a ghost writing company. I've written articles for mainstream craft, art and design journals, locally and internationally. I have chapters in a book that was published about the Freemasons in Australia. There are education kits in a major Australian performing company and a Sydney museum that I researched and wrote. I started my blogs (I also have a hugely neglected book blog, which was my first of the two) so I'd have a place to write that didn't impose a brief. But I don't really regard blogging as a hobby - it's part of a larger writing practice. It's just the place where I get to write what I want.

I'm an artist. I draw, paint, create mixed media works, and I work in clay. I'm tinkering with photography too. I've exhibited and sold all over the country. I've taught - art, and art history and theory. At the moment, due to lack of funds and studio space, I can draw, but that's about it. I'm struggling to find the right headspace though - I have ideas that could get me going again producing steady work, but I also need to find outlets. It's energy to make the list and go scouting that's holding me up there. Again, it's not something I do for the fun of it. It's professional work and I aim to be selling it. Very long term, my ideal situation would be to have a home based studio that's set up for a mixed practice, with a kiln for ceramic work, where I could maintain my own practice, and also run small classes for adults. That's going to require some very different financial circumstances to where we are at present though. 

I'm a musician. I'm a classically trained singer and was part of a major opera company chorus for fifteen years. As well as chorus, I had some small bit parts and understudies. I've also fronted big bands and concert bands as a soloist. I was a member of Australia's only professional Jewish choir in Sydney. Right now, I'm up to my eyes with my synagogue's community choir being part of the High Holy Days services. Yom Kippur starts at sundown tonight and goes through all of tomorrow. I've been a singing teacher in my time too - in schools and privately. 

Even food, for me, has a professional base, so while I do enjoy cooking, it's something I've done professionally, and that's always there in the background. That professional experience isn't something that goes away after you finish working in an industry.

So, I'm a creative, a professional creative, with skills and experience across a few different fields. It makes crafting a hobby out of these activities impossible, because my head is in a professional space when I do them, and that brings its own pressure. It's something I find other creatives who've worked professionally in their fields understand. Those who enjoy many of the activities I do as hobbies, don't... For them, it's an escape. The activities are something that's different from the rest of their lives, and it gives them that place to do something for themselves that IS separate, and just for them, and fun - it's play. None of these things have been 'play' for me for a very long time. I'm not unhappy about that, but herein lies my difficulty with the concept of hobbies....
I DO have an escape. I'm a reader - a voracious reader. My kids used to tell people I ate books. Even the Stepson started giving me his school books of an afternoon saying I could have it to read because he knew I'd have it back to him in the morning, finished, to take to school again... To that end I have an enormous home library - many thousands of books. There are two major fiction collections - adult and children's. They cross many genres. And I read them all. That's a criteria for them to remain on my shelves. If I don't re-read it in a year, then it goes. Books take me places. On a bad day, I can tuck myself up on the couch with a blanket, the cats and tea, and get transported to wherever the current book is set and become part of someone else's life and adventures for a while. Oddly though, reading is still not something I see as a hobby. For me, reading is like breathing. I can't not read. I ALWAYS have a book with me, and usually have a couple on the go at the same time. 

My range of activities is broad enough that there's usually something I can find to do to pass time, and connect me with other people, regardless of how crap I'm feeling. At worst, I hibernate with a book and populate my immediate world with the characters from the books I'm reading - they have the benefit of not requiring me to find the energy to be polite or look after them! 

So, having established that while I have any number of ways I spend my time, but that I don't regard them as hobbies, the thing I WOULD say is that human beings are creative creatures, inherently. So, if you don't have something creative that you do that's apart from your normal day to day activities, and something that offers you time out and an opportunity to meet new people, then get out and find something. The online world has opened up numerous opportunities for group activities that you can do from home too, so not being able to get out physically needn't be a block to that either. The photo challenge I do on Facebook has introduced me to many new people, and has lead to my photography improving out of sight - and that's with me only having a phone camera for digital photography. I've even met people face to face in the group for planned photography meet ups. So, there ARE things...and they do make a difference when you can get to the end of the day and look at something you've done, someone you've spent time with or spoken with that's, for a little while, taken you out of the day to day thing of being ill.

Wednesday, 27 September 2017

RABlog Week 2017, Post 3: RA and partners

Partners  Where would we be without our partners? They are often not just partners but caregivers. Tell your partners story. And if you do not have a partner what will your ideal partner be like, or do you even want one?
Well, that's a big question... It raises a gazillion possible issues in itself, and for me is a complex topic. I'm also still running a day behind the prompts, so this may not be the most considered post on the topic that I might write. 
I was diagnosed with RA in 1992. That's twenty five years ago. A bloody long time... And a number of partners over the course of that time (and that's another story...suffice to say, it's taken me most of my adult life to figure out relationships and to NOT keep getting involved with replicas of my father...). At the time of my diagnosis, I was still with No.2's father. The RA appears to have been triggered into full activity by my pregnancy, as there'd been no overt indicators before No.2 was born. However, with the clarity of hindsight, I can pull together odd things that, gathered together, are clear indicators that there was something much bigger going on. 

At the time, life was very busy. (For my diagnosis story, read HERE) I was back at work after six months of maternity leave. I worked in a day care centre, so I could take No.2 to work with me. I was still breastfeeding - almost entirely - he was completely uninterested in solid food. I also had a contract with the opera company that was particularly busy - a contemporary opera for the Adelaide Festival. No.2's father was working full time, but sort of on call shift work, given the nature of his job, so his hours were all over the place. He was also conducting two concert bands out of hours, so was not home a lot. We had a huge mortgage, and money was tight so altogether it was pretty stressful. Me getting sick was the straw that broke the camel's back. My then husband didn't deal with it at all well. Ostensibly, he was supportive, and said all the right things, especially when there were other people around. But for me, the emotional support was just not there. I was deeply frightened, and had to deal with the additional trauma of weaning No.2 - something neither of us was ready for - so that I could start taking medications to deal with the pain of the arthritis while tests continued to establish a precise diagnosis. I felt very alone. No.2's father didn't 'do' illness. He's a man who largely lives on the surface of life. Emotional issues are something he avoids. Ultimately, it was a large factor in our marriage breaking down, which finally happened when No.2 was around 4. 

What followed the breakdown of my marriage was a long period of single life. The other adult who was the most present figure in my life was my mother. She was amazing. She stepped in and became the 'other parent', given that my ex, by then, was also studying part time and was very unavailable. She was the one who pitched in if I was flaring and needed another set of hands. 

It wasn't until No.2 was 9 that I met someone. Another mistake, and a colossal one at that. I'm not going to retell that story in detail, it's not pertinent to the discussion, other than to make the point that the fact that I was sick was part of what drew him to me. He needed to have someone to look after. But almost nine years of chronic illness - thankfully comparatively mild, but very much a factor in managing my life from day to day - had made me very independent, and very capable of finding my way around the things that were difficult. He NEEDED me to be sick. I certainly didn't need someone to need me to be sick!! Ultimately, it became a highly toxic and dangerous relationship from which the kids and I were forced to flee and go off the grid. In hindsight - again - we were extremely lucky to have the support of some very fine women, both emotionally and practically. 

I had a brief relationship many years later - 2004-06 - that was the last of my 'father figure' men. He also lacked the ability to cope with a sick partner. My RA WAS a factor. It played out differently with him but it was a definite issue. 

By the time I met Dragon Dad I wasn't looking any more. It just happened. And he's NOTHING like my father! The RA, while progressing, was still moving slowly and was largely manageable. The first experience he had of how it could impact me was a six month period early in our relationship when I caught a cold - which exploded into a massive chest infection very quickly. That was followed by a string of UTIs, reactions to medications, another chest infection - it was a bad six months. Throughout, although struggling with demons of his own around relationships, Dragon Dad was solicitous and caring - and his practical care was superb. Shopping and cooking done for me - at his place or brought to mine, prescriptions collected, etc. The flares came and went - he struggled to understand the ramifications of the disease, but asked questions constantly, and was supportive when I tried to do things like build fitness and find means to train without tripping flares. To this day, he's the only person who's trained me and NOT triggered a flare - and that's counting the many professional personal trainers at gyms where I've had memberships over the years who just didn't LISTEN...

We were living together by the time the wheels fell off in 2013 and the RA exploded overnight - it felt like overnight anyway, the change was so sudden and so severe. I was terrified - I had no idea why my body had suddenly gone rogue - there was no particular trigger. I was, in fact, the fittest and healthiest I'd been in some time, exercising regularly, losing the weight that had gone on after a bad accident to my right knee had had me on crutches for six months. 

Months and months of tests, medications, disastrous reactions to some of those meds, and then a hospital stay ensued - it was all pretty nasty. You can read the details of that HERE. Since then, it's been an ongoing struggle to find the magic mix of medications that will keep me stable, slow the deterioration, and allow me to live as normal a life as I can. As those of you with RA know, that's NOT a straightforward path. There have been many ups and downs. There have been some really bad times when I've had extensive flares, I've struggled emotionally, I've been really scared, and I've not known what to do next. 
Dragon Dad has been there. He's been scared too. He watched my five week black out while I was on Methotrexate - deeply frightened. He's been frustrated - he's a man who fixes stuff. If something's not right, he fixes it. He's a good fixer. He can't fix this. And he finds that extremely difficult to cope with at times. It's OK while I'm doing well. When I'm not, it really bothers him that he can't DO anything. He compensates by spoiling me - he buys me good bottles of wine, Haigh's chocolate, brings home DVDs of movies I love, packs me into the car to go for drives so I don't stagnate in the house, rubs my feet, runs baths for me, anything he can to make it easier for me. He's taken over the heavy housework - as he said yesterday when I told him about the posts I'd written, if I leave something long enough - like the dishes (see my PaD photo from Monday 25th September), because I'm not functioning well enough to do anything bar the most basic things, he just does them. 

He's NOT perfect. He doesn't get it right all the time. He does have a tendency to make decisions for me, on the basis of what he thinks I may or may not be able to manage. That's an ongoing conversation between the two of us that I find I have to revisit periodically to remind him not to do that. It drives me absolutely bonkers. The irony is, he HATES people making decisions on his behalf, so he really should know better. But in his manifestation of the alpha male, and the fixer, he does it for me, for the Stepson, for anyone he has some sort of care position with... It's a major pitfall for those who care for those of us with chronic illness and disability and it takes a delicate balancing act for those who do the caring to NOT fall into the habit of making those decisions for us. He may well be accurate in his assessments, but that is NOT the point. When he does it, he disenfranchises me and my ability to make those choices for myself. 

At the end of the day though, like so many do and as some have done in my life, he could have bailed. But he didn't. And I'll always respect that and be deeply grateful. It has changed and affected our relationship, me being as sick as I am now. I know that, and it makes me sad. But the love and respect we have for each other is profound, and THAT is the basis we build on to continue in it and continue as partners in this mad thing called life.

Tuesday, 26 September 2017

RABlog Week 2017 Post 2: Living with RA - Tips and Tricks

Tips and tricksWhat are the ways you have learned to work around the physical difficulties and limitations of your autoimmune condition.

I liked the idea of this prompt from the outset, but I've not got a nice organised list to download into a post...I'm just not that organised!! So, bear with me while I ramble through how I manage day to day.

The biggest thing, which has made the biggest difference overall, has been to learn to LET GO. I'm something of a perfectionist, and a massive multi-tasker. Back in the day, during one of the busiest times in my life (VERY early years of RA when it was very milk) I was at art school in the final years of my degree, sole parenting two children who were at two different schools, had a one day a week job in a garden centre with my mother, and had the opera chorus contracts as well. It could get VERY hectic when they all started colliding...which did happen. But I got through all of them. Finished assignments, learned my music and did the shows, got to work on time, got the kids to and fro where required, and kept up with the house - well, sort of, re the latter. My house couldn't have been photographed for a magazine spread at ANY time during that period, but that wasn't on the calendar so it didn't matter. 

It's been VERY hard to come to grips with the fact that I just can't load myself up like that any more. But I can't, and I don't any more. ONE thing at a time, and on the bad days when I can't even manage that, let it go... 

Related to that is learning to say NO. To people who ask for help, or extend invitations, or have expectations... Most of the time, it's going to be OK, and it's nice to be invited out, and it feels good to help people out, etc... BUT, not at my own expense. I was someone who said YES without thinking most of the time. But these days, I take a moment if I'm asked to do something - no matter what it is. I might need more than a moment, in which case I let the person know I'll get back to them to allow myself space to work out if it is something I can manage or not. I don't make up stories either if I end up realising I have to say no. I tell it as it is - I tell people if I'm not well enough to go somewhere, or do something for them. They may or may not take that on board, but that's not MY issue - it's theirs. MY issue is being able to manage what I need to do on any given day, and saying yes and adding a load I can't manage can mess me up for my day, and more days beyond that sometimes. So, learn to say no and look after yourself. And that, by the way, includes saying no to your children (if you still have children at home) if need be.... Obviously, not for something that HAS to happen, but they also need to learn that you can't be going non-stop without it being potentially harmful. 

Managing at home - well, there are things I just can't do domestically any more - not if I want to be able to do anything else that day. I CAN'T vacuum the house and expect to have my hands functional by the end of the job. So, Dragon Dad, bless his cotton socks, vacuums and mops. I use the dishwasher - my hands aren't safe in a sink. I have a gazillion cooking hacks - I wrote a post about those a while back - you can read it HERE and take whatever is useful for you and tailor it to the way you eat. 

Overall though - PLAN. Work out what you need to do, what you can do, and make a plan around those factors on each and every day. Be prepared to delegate. Days I know I'm not going to make it to the end of the day and be able to produce dinner, I let Dragon Dad know as early as possible in the day so he can bring something home on his way back at the end of the day. If there's an appointment I need to get to and I know I'm going to struggle to do the drive, I find someone to take me. If there isn't anyone, I move the appointment. If I can't get all the shopping done on one day, I break the list up and do it in smaller batches over a few days. If there's a busy time ahead - I mentioned the Jewish High Holy Days in my previous post (we're in between Rosh Hashanah and Yom Kippur at present and I'm singing in the choir and there are piles of rehearsals) - plan ahead. Move anything that's not essential so that in between the things that must happen, there's down time so you can rest... I'm doing bugger all apart from rehearsals and services at the moment, and that's how it'll be until after this weekend coming is over. It's why these posts have been going up late - because I HAD to rest. 

Accept that perhaps you won't do things to the extent that you once might have. A big one with that for me right now is this blog event. For the last two years, I've been very prepared and have written very considered and detailed posts. This year, that's not happening. I've been up to my eyes with the High Holy Days prep. I'm exhausted. I'm flaring. I had my infusion yesterday because with diabolical bad timing that came right between Rosh Hashanah and Yom Kippur. So I had a choice - write much less considered posts off the top of my head and still be part of the event, or bail altogether. I told myself that in the greater scheme of things, it would be OK if I bailed. Which it would have been. BUT, I wanted to do it. I've really enjoyed it in past years, so I didn't want to miss being part of it this year. So I decided to just get moving and write SOMETHING. Are they the posts I'd have written had I had different circumstances that gave me more time and energy? No, they're not. But it's a great illustration for this particular prompt - because I'm having to let go of that notion and just embrace the fact that if I'm going to participate - THIS is how the posts will be.

And on that note, I'm wrapping up this post, because I have a rehearsal tonight so dinner has to be early so I can eat before I go and it's 4.30 and I need to make a coleslaw to go with the chicken we're having.