One of the more insidious things with chronic illnesses is that it can get very easy to have your world shrink. Pre-2013, I was working, getting together with friends, going to gallery openings (I was doing a reasonable amount of exhibition reviewing), swimming regularly, going to different events as opportunities arose, and so on. A fairly regular, busy, contemporary life.
Now, a visit to the cinema is a highlight, and the most social I'm being is the odd coffee get together with a friend. We've been going to shul semi-regularly, but haven't really got very involved at the synagogue apart from attending those services. Occasionally, we head to friends down the Mornington Peninsular for a drink or a meal. Mostly, if we go out, we're prowling different areas of Melbourne and finding what might well become familiar haunts - just the two of us. I've found Tai Chi Australia, and have been in touch. The most logical place for me to go to classes is about a 15 minute drive away and the next beginner class starts on the 18th of this month.
Here's the thing though... I'm dreading getting to that first class - finding the school where it's being held, finding parking, finding the room, and then walking in not knowing anyone. I want to ask Dragon Dad to come, only he doesn't want to do Tai Chi, and I'm aware of just how pathetic that would make me sound. He's asked me a few times why I've not gone to services at the shul on my own, when he's not been able to go... A part of the reason is that the Friday services are at the end of the day when I'm most tired, so I dread the drive back after I've sat for an hour at the end of the day and am really stiff and sore - and that's what I've told him. But also, it's the whole going by myself thing, because I really don't know many people at the shul, and those I know are passing acquaintances, not actual friends. I've still not emailed the cantor about the choirs, which would alleviate that particular situation since once I'm involved, there'll be a core group of people within the community that I will get to know, and I'll have a 'place'... But it's still that initial step.
Why is this...?
Part of my reticence is our current extremely tight financial situation. There are a number of things I've found that I could do - which would both throw me into getting to know people, as well as getting me out doing things I enjoy, but they cost. And we really can't afford extra expenses at the moment. Tai Chi fits into overall health care, so it's a priority that can be sorted out financially, along with other things that Dragon Dad's doing for his health and fitness. Some of the others, while no doubt good for my mental health don't feel that straightforward.
Another critical element is that new people mean explanations. When it's just Dragon Dad, or friends I have here already that go back some years, I don't have to explain. I can say I'm not well, and they're sympathetic, but don't need me to explain. Strangers are another thing altogether. My old friends have known me before this severe phase of the disease. They're not happy I've got so sick - for my sake. But they know who I am, what I've done, what I can do, etc. They know the whole me, not just the 'sick girl'... There was a time when I could walk into a new situation and it wasn't necessary for anyone to know. I was well enough for it not to show, and for me to rarely need accommodations to be made. If I cancelled something, it was usually for some big and immediately understandable reason - not because I was having a bad day. Because my 'bad day' now is about being too ill to manage something - too much pain, or too much fog, or too many side effects immediately post infusion, and so on. For instance, the Tai Chi class I'm looking at is on a Tuesday. So is my infusion, every fourth Tuesday... So, once every four weeks, I'll need to go to a different class on a different day, because the end of the day on infusion day is definitely not going to be an option. I'll have been sleeping most of the afternoon and I'll have the headache from hell, and a level of drug infused fatigue that's impossible to get past. I won't be capable of driving or being as physical as the class will require. And I'll have to tell them that - and make arrangements for which class I pop up in like a bad penny every four weeks...and tell the teacher of that class too.
Little by little, all these bits and pieces of emotional baggage start to add up to the point that they can end up looking like an enormous wall of 'stuff' that just can't be scaled. But I don't think I'm alone. I suspect that this is a phenomena that many of us with chronic illnesses know and understand, even if it's not something we articulate for ourselves or anyone else.
My rational self tells me that it's going to be FINE. That I don't need to get myself into such a state. Because when I do scale that mountain, things usually are OK. The friend I'm seeing most frequently at the moment is a new friend, in physical terms. I met her online in an international RA support group, and invited her to joint the Australian one I'm involved with. Then it turned out she lives in Melbourne so when we knew the move was really happening, I tucked that away in the back of my head for when we finally moved. I didn't do anything about that after we'd made the move though, not immediately. For one, there was that whole 'do I cross the line from online contact to face to face?' thing that's very much part of the online world vs real time. But also, it was that whole thing about taking that first step. Then I had a crisis situation that she became aware about via an online conversation, and in the end we did meet up in the next few days. Because it turns out we don't live very far away from each other, so it's REALLY easy to get together. And it's been lovely - given the context of how we met in the first place, we don't have to explain anything about illness, because we're both sick!
So, things can work. I know this. But I've had almost three and a half years of my life steadily shrinking and it's really hard to acknowledge that I've got a part to play in that, and if I don't want to end up being completely isolated, I need to put my big girl pants on and just step up. Which is, ultimately, what this blog post is about. I'm putting it out there. Saying it out loud so I have to do something about it, because it's not hiding away in my head any more! Those of you who read this post now know too...so I now - well, once I hit publish - feel like I'm accountable!
Wish me luck, folks. It's time to crawl out of my shell and start making my life happen again. And if I can do it, so can you, so tell me your stories!