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.