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.

RABlogWeek 2017 Post 1: Mental Health and RA.

It never ceases to amaze me how much faster the years roll past as we get older...and that it's late September and #RABlogWeek is back again... So, first post of five this week - we'll see how I go with keeping up. For those readers unfamiliar with this event, RABlogWeek is an initiative set up by my friend Rick, who blogs at RA Diabetes. It's an international event involving people with RA blogging each day, responding to set topics. It's fascinating reading all the different responses to the posts, and something I've found to be a good focusing activity, as - oddly enough - it usually hits in a point in the year when I've lost my blogging mojo...weird that.

Mental Health – How do you manage to maintain your mental health while dealing with autoimmune disease? Discuss how dealing with RA every day makes you emotional. Do you hide your emotions?
I had to laugh to myself when I saw the first topic for this blog event. Regular readers here will have read a number of posts I've written this year pertaining to mental health issues - mine - that have arisen largely due to having RA and dealing with it now being severe. For those new to the blog, or who perhaps haven't seen those posts, you can read them HERE, HERE and HERE. If you read them in the order I've done the links, this post will possibly make more sense, because managing one's mental health alongside a chronic illness is definitely a journey. 

So, how do I manage day to day...well, that can be something of a moveable feast. I don't have an overarching plan, currently, and I'm not seeing a therapist of any sort right now. So, I'm self managing. 

I'm a reasonably positive person, inherently, which is useful in the sense that being depressed - as I currently am - (backstories linked above) is a deeply uncomfortable thing - and I mean REALLY uncomfortable. And that's on top of all the feelings involved with depression. So I'm fighting the demons, wanting to retreat and hibernate, generally avoiding people, etc, but at the same time, my inherent nature is up in arms against all that. Overall, that's a good an useful thing, but it does make for feeling very uncomfortable in my skin, at the same time as providing me with the impetus to DO something about it rather than stay stuck for too long, as might be the case if I tended more to negativity and depression... 

I MAKE myself get out most days. I aim for everyday but don't beat myself up if I can't make it - although, a few days running of staying at home is now a red flag. I take myself out to have coffee in the mornings nearly every day - it's a small expense,  but it's a means of ensuring I DO go, and it means I need to speak to people, if only to make the order for the coffee. Sometimes, like today, I arrange to meet up with someone - but I do tailor who that is depending on how I am. I'm post infusion today, with a monster headache and I'm feeling pretty crappy, so the person I saw is someone else who has a chronic illness and gets it, so it's OK to be crap. 

I have ongoing projects. I do a daily photo challenge - you can read about it and see some of the photos HERE (if you checked out the other links, I talk about it in some of them too). This year, it's been a lifesaver. there's a prompt every day for a photo that has to be taken and then posted on Instagram or the group's Facebook page. It's a commitment I have to keep. Some days, the really bad ones, it's the ONLY reason I've got up. And then I sit on FB and watch the other photos popping up and chat to people via the comment threads. It's got NOTHING to do with RA or any other chronic illness, and that's a good thing. It's creative, it gets me out of myself. If you want to see my photos, hop on over to the Dragon Mother Facebook page - I post them there too. 

I committed to the community choir at the synagogue for the High Holy Days - which we're in the middle of now (which is part of the reason I'm so late with this's been very busy). I'm a trained classical singer. In Sydney, I was a member of the only professional Jewish choir in the country. So, singing in a community choir is very different, and I have to bite my tongue sometimes, because the environment is completely different. BUT, it involves me in my community in a useful way. It gets me singing again - and singing releases endorphins - and we all know how good they feel! Also, it's helped me meet people in the community with whom I have things in common, so it's the beginning of new friendships. An added bonus is that someone I knew in Sydney is also now in Melbourne and singing in the choir too, so rekindling an old friendship has been lovely. 

Exercise. I can't rant on enough about how important it is to keep moving. Mind you, I'm bang in the middle of a fortnight that's made it impossible for me to get to my Tai Chi classes - rehearsal schedule clashes, the infusion, AND just feeling SO crap with a flare...something had to give and that was it. But starting Tai Chi this year has been fabulous. Getting out - again - meeting new people - there's a pattern here... - and doing something that's physically challenging BUT possible, and that's helping me overall with strength and mobility. And, again, after a class, those lovely endorphins...!! 

Ultimately, while I don't have a plan, per se, for managing depression, there are things I've put in place to help me manage around it, and stop myself from getting sucked too far down into the black hole. I'm not one to splatter myself all over the place, so by and large, people haven't really been aware of the emotional struggle that's been going on. I didn't even really write about how big it was until fairly recently (it's the third of those links to past posts up early in this post), and I've not talked to Dragon Dad about it in any detail, because right now HE'S suffering from depression and extreme stress, so he's not in a position to be able to cope with mine. That will pass. And then I'll talk with him. But for now, part of me looking after myself is ensuring I don't push HIM over the edge... 

It's different for everyone. But at some time in a chronic illness journey, depression IS going to be part of the picture, and it may be something that recurs at different times. Knowing yourself well enough to know how best to tackle the situation is vital, and if need be, seeking appropriate help is really important. I'm not currently seeing a therapist - and there are a few reasons for that, but I do have someone I can access if I feel as if the things I'm currently doing are inadequate.