Wednesday, 23 September 2015

#RABlog Week: Post No.4 Five things I have learned

Today's prompt:
Five things I have learned - write about the five things you have learned about yourself, or RA.

This is an interesting one for me. As a freelance writer, I do a lot of web copy - blog posts for business websites mostly, and there are a lot of 'X types of .... ' kinds of posts. Search engines LOVE lists, so blog posts with lists usually land fairly high up in a search. They're also easy to read, so the clients love them. As a result, being a little perverse by nature, I resist making lists on my own blogs. They're not business blogs in any case, other than in the sense that they are a way of promoting myself as a writer, but that's more incidental than a conscious business decision on my part. 

Also, my demented brain - while addicted to making lists to manage my days, is particularly resistant to presenting information FOR a list when I'm trying to make one. For instance, any time I need to make a list of people for invitations or sending mail, I have to go get my address book, or check the contacts in my phone. As far as my brain is concerned, I don't know anyone at all, because after the first two or three names, it just dries up and I can't remember anyone else without a visual prompt - which leads me into the first of my five things for this post (which aren't in any particular order of learning, they're landing just as they come).

Brain fog
Brain fog is a thing. An actual, real, medical phenomenon. Some back story to this discovery: for nearly twenty years, my RA grumbled along, moving quite slowly, and for the most part, relatively mild. I had flares - a few that sent me to bed for weeks - and was slowly deteriorating, but it was slow. Three years ago, the wheels fell off and it was like someone had recharged my malfunctioning autoimmune system with mega powerful batteries because over a six month period, everything started changing and I got very sick very fast. This meant finding a new rheumatologist, and starting on drug protocols I'd largely been able to avoid for most of my time with the disease.

So, my rheumatologist prescribes methotrexate for me, and hands me a print out from the Australian Rheumatology Association about the drug, including a couple of lists of different side effects - usual ones and rare ones. There were the usual medical type terms for various things, but right in the middle was this thing 'brain fog'. I laughed - seriously, I did...I cracked up, and told my partner who also thought it sounded amusing. We don't laugh about it any more. These days, I'm on three drugs that all list brain fog on their list of potential side effects, plus both chronic pain and RA itself can generate brain fog - so I'm screwed! But, who knew...? I do now. 

I am not an inherently patient person. It's just not in my makeup. With HUGE amounts of effort, I learned to be more patient when I had my children - so they'd have half a chance of reaching adulthood alive... RA has taught me a different kind of patience. It's taught me to be more patient with myself, because there are so many times now when I have to slow down and figure out a different way to do something if I'm to continue managing it for myself. On the days that I'm flaring badly, I can't necessarily do the things I'd planned for those days, so I have to just let them go and wait until I'm feeling better. I also don't go off like a firecracker when something makes me angry any more, because that takes way too much energy that I need to just stay upright sometimes... Instead, I have a finely honed inner process that I don't really consciously think about any more - I ask myself if there's anything I can do about the thing that's happening, and if so, I do it. If not, I walk away. My partner is also not the most patient character and has a pretty short fuse, so he finds this very frustrating, I'm sure, when he's in the middle of a huge angry rant over something he's seen on the TV news or read in the newspapers, and is clearly wanting someone to join and support him in his aggro moment - but that's not going to be me. It won't help me to waste that much energy when it's usually something I can't do anything about, so I just don't go there any more.

Medical facts 
I'm an academic by training, so it's just in me to do research and learn stuff. Ever since diagnosis, I've been learning about RA and other autoimmune diseases. It feels natural, because I have this thing, so I want to know as much as I can about it so I can make informed decisions when I'm faced with having to make a decision. I want to have some degree of control over my medical care, so I need to understand what I'm dealing with so I can discuss that with my doctors without feeling like I'm working in the dark. It does result in some funny situations occasionally though, because in 23 years, I've amassed far more than the usual amount of medical knowledge than most lay people. 

I went to Italy for a month ten years ago and was doing an art history course with the British Institute in Florence. On one of our field trips we visited the church where a lot of the Medici family are buried. For a number of years, there'd been a long running forensic medical project running due to curiosity about why so many of them had died young, so permission was granted to disinter them and do piles of tests on the remains. The lecturer was describing the sorts of things they'd discovered and bells were going off in my head, so I asked him if they'd ended up making posthumous diagnoses based on the findings. He wasn't sure, and asked me why so I told him that the collective symptoms sounded like autoimmune diseases, particularly RA and lupus. He was a bit taken aback and asked me if I was a doctor, and I had to say no... Later we had a chat and I filled him in and he found out some more information for me before the course had ended - it is felt that there was a genetic history of autoimmune diseases amongst the Medici.

It can be an issue - some doctors are pretty sensitive and protective of their position as the medical expert. They can get quite huffy when confronted by a knowledgeable patient. My own rheumatologist likes it - he encourages all his patients to learn as much as we can so that there can be a more collaborative relationship between us. He wants to know what I've been reading and what I've been discussing with people. 

Appreciation of the simpler things
It's SO easy in today's over-full consumer driven lifestyles to get caught up in things that, ultimately, don't really mean very much. I've had my time running around trying to keep up with all sorts of current trends, working multiple jobs, striving for more and more... It takes a crazy amount of phenomenal energy and stamina. That, I don't have any longer. I live a much simpler life now. My children are grown and out on their own. My stepson too. So it's just my partner and our two mad Siamese cats now. He works very hard with his business, so for us, the most precious thing is having uninterrupted time together doing simple things. We're finding we need less 'stuff' - it's just so much clutter in the end, really. Time together, a good meal out occasionally, seeing a good movie or a show when there's time and the funds, or even, like yesterday afternoon, just taking the time in the middle of errands to stop at a wicked shop not far from us that sells cake by weight and makes excellent coffee. We indulged, laughed and enjoyed ourselves before heading home to get on with work things again. 

Family and friends
This is related to the previous thing... A lot of people online write about how they've lost friends due to being sick. I've had people go from my life, and others come in. On the whole, I think that's mainly just been part of the normal changes that happen in the course of a life - people DO come and go, and some aren't around for very long, while others may become lifelong friends. Whether I can or can't 'do' some of the things I used to hasn't been a huge factor for me in retaining long term friendships. I've moved a lot, so a lot of my closest friends aren't nearby in any case. Also, for me, the RA is something I have, and it's a pain in the butt, but it's far from the primary focus in my life - and that's for my own sanity more than anything else. I find it incredibly tedious being sick so I tend to focus on other things in the normal course of my day, no matter how bad it might be on any given day. 

I DO say no to things when I'm asked to be someplace, or do something, if I know I'm not going to manage it - like a good friend's 50th birthday, when it was going to be a camp out situation on her brother's acreage. As much as I loved camping growing up, tents and blow up mattresses aren't going to be figuring on my activity list any time soon these days! She got it. We'll do something else to celebrate - which means she'll get more out of her birthday - bonus! My friends are infinitely precious to me - losing a good friend recently has been devastating. That I got to spend the day of her funeral with my very closest friend and another from our uni days was very lovely, and I know Lizzie would have been so pleased that the three of us had that time together. But it makes me very conscious of just how fragile life is and how much every opportunity to spend time with dear ones has to be grasped with both hands and taken. There don't have to be spectacular occasions, or fancy venues - just time. 

So that's my five things - at least that's the five that came to me as I wrote this post. If I wrote it tomorrow, there might be a totally different five things! I'm looking forward to seeing everyone else's too, because I think it's going to be a very diverse list... 

And now, because I can, one of my 'simple things' - here are my two cats. Rumi - the little one - is 4 months old, and Callie is 16 months. They're full sisters, born a year apart to the same parents. They make us laugh every day. Enjoy.


  1. It's funny... I never really knew brain fog - truly knew it - until after my big flare 10 years ago. Also compounded by getting fibro at the same time. For a while, I thought I was losing my mind. It was really scary.
    Love your kitties! I've wanted a sealpoint Siamese for decades. Not sure I could handle the personality, though. :)

    1. Methotrexate completely wiped me out for the five weeks I was on it - I don't remember July 2013. That was pretty extreme brain fog. But the bios do it to me, and pain. Nasty. My partner's commented on it a few times. Really hard to explain to people - and calling it 'brain fog' probably doesn't actually help much!
      Siams are the BEST. These are my third and fourth, and the first time I've had two at once - which is a whole different ball game to having a single one. They make life hilarious. The little one was out playing in drizzle this morning apparently, and the skies open so she was very suddenly soaked through - came skidding in through the back door with eyes like saucers, needing time in a fluffy towel. The big one is on my desk right now next to the computer chewing the corners off my pile of scrap paper...! They are loyal, loving companions, but a bit crazy too...go KNOW you want to....

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