This post originally appeared on Creaky Joints in late 2015.
A little while ago, my cousin and I had a mini road trip up to the central coast north of Sydney to watch my eldest son swim his first 1500m ocean race. He’s preparing for the Noosa Triathlon – a full Olympic length race. It’s his first full length triathlon and at the beginning of the year he couldn’t swim, so it’s an awesome achievement. That ocean race was to get the monkey off his back about the 1500m swim. He swam really well, and discovered that not only will he not drown, he’ll also potentially be able to make it through well enough to be not too far behind when he picks up the 40km bike lap, and then the 10km run.
The hours in the car gave my cousin and I a lovely time for some serious catch up conversations. We talked about anything and everything, as you do, and at one point, I said to her, “There’s a blog post for Creaky Joints!” Then, I went to write it, and couldn’t for the life of me remember what the hell the topic was that we’d been talking about… So I emailed her, and got this message back: ‘Yes I do and it’s funny you ask – it was about you being forgetful lol!’
I used to pride myself on my memory, and in some ways, it’s still capable of amazing things… My earliest memory is from when I was about nine or ten months old – which is quite rare. My mother verified it after I described the scene I remembered – it was in the dining room of the place we lived when I was born, and we moved from there before I turned one.
I can remember all sorts of weird, random things from my childhood, from things I read, conversations, places I’ve been, and so on. I trained myself to memorise words (usually in a language other than English) and music for my time in an opera chorus – because we couldn’t head out onto the stage bewigged and costumed carrying the score!
It always has played some odd tricks on me though. I’m useless in exam situations – unless it’s essays. Anything else, and everything I’ve studied til I know it inside out vanishes like my head has been erased. It’s the same when I try and make a list of things – like names for invitations. Suddenly, it’s as if I have no friends, and I have to reach for my address book and work through that to make my list. Mind you, if I make a shopping list and then land at the shops without it, I can remember everything on it…but heaven help me if I didn’t make it in the first place.
Then, enter RA, and RA drugs…Brain fog. The first time I saw that on the list of potential side effects of a drug, I laughed. It looked so bizarre in the middle of a list that was, otherwise, made up of legitimately medical sounding things. Then I started that drug. And stopped laughing. I have no memory from July 2013. None. The drug knocked me out – literally…it wasn’t sleep, it was something much more solid than sleep – for the rest of the day that I took it. After that, the rest of the week was a blur. I might have a day or so with a clearer head, but then dose day came up and it all started again. As I say, I can’t remember very much of that month. Hearing Dragon Dad describe it to other people – including my doctor – is horrifying. I couldn’t drive. I wasn’t functioning. My doctor stopped that drug, and says I can’t ever take it again.
What I’m left with though, is three other drugs that also list brain fog amongst the various potential side effects, and then there’s the effect of chronic pain, which can also impair normal cognitive function. So, basically, I’m screwed!
I find myself, all too frequently these days, mid sentence with no idea of what I was going to say next. Half way through conversations, I can completely lose track of what I have been talking about. I have conversations with people, then turn around and ask them a question, only to be looked at oddly, to have them tell me we just talked about that…
If I don’t write appointments down, I forget them. Actually, if I don’t put them in my phone calendar with a reminder set for a couple of hours ahead of the appointment time, it would be entirely possible that I’d not make it. I have forgotten appointments. I’ve turned up on the wrong days, THINKING I had an appointment, when I didn’t. I love those of my doctors and other para medical people who send reminder texts…because then I can double check that I have my reminders set up on my phone.
I do my regular blood tests on the Monday before I start a new box of my biologic drug – and I’ve had days when it’s been lunchtime on that Monday before I remember I have to go do it. I’ve even started occasionally to forget to do my biologic shot, which is set for first thing in the morning on a Tuesday.
Standing in a café trying to order a coffee and food can get really embarrassing when I can’t put the words together to do the order. My close friends and family have slowly grown accustomed to my memory failings, and are less likely, now, to be irritated. Strangers are something else again.
Forgetting things to this degree, on a regular basis, is not normal for me. It is something I’ve acquired due to both the RA and the drugs I use to treat it. It’s possibly one of the least understood effects of chronic illness, and it’s really difficult to explain to people who lack the necessary background medical knowledge. It is irritating to be on the receiving end of me having a memory moment – I get that. But it’s not something I can control. I can put checks and measures in place to try and minimise the impact on my daily life, but that I have to do that rankles.
My old memory – pre RA and these drugs – was an odd and patchy thing. But I miss it. I miss that with most things, it was very reliable, even if I made a mess of exams. I struggle with the fact that I can still remember our phone number from the house I lived in from three and a half to nine and a half, but I can’t always finish a conversation without having to be reminded of what the topic was. I hate the fact that I find myself making jokes against myself to ease a memory glitch in a conversation with someone who has no idea that there’s an actual issue. Most of all, I hate the fact that the drugs I need to treat my RA and keep it at bay are doing this, so I have no choice but to keep taking them, and dealing with this particular side effect.
The brain fog persists. I managed to completely forget a rheumatologist appointment at the beginning of the year. Much grovelling ensued with the receptionist, to avoid having to pay…thankfully, they were understanding. If he's having a good day, Dragon Dad is understanding of my fuzzy brain. But on a not so good day, things can get tense. I can't help it. He knows that. But I know it frustrates him.
And an update this morning about my son – he ran the Sydney Half Marathon this morning, coming 128th overall, from a field of 12,000 runners, and 58th in his age division. Whether he’ll do another triathlon is questionable. For now it appears that his running and cycling are the main priorities – perhaps a race that just has those two in combination!