Lupus: It's Not a Harry Potter Character.

The lovely Rachel from Fluted Cups & Ampersands wrote a post recently about how to talk to sick people. It's a pretty cool post, and really worth a read.

I've realised that I don't always know how to talk to "healthy people", and that is far more about me than it is about them. It's not because I think they're all that different from me, or that I think just because someone hasn't experienced chronic illness themselves they will automatically lack empathy. And it's not that I have nothing to talk about aside from health issues - there are a multitude of other things about me that are more interesting than my illnesses. It's just that all the things that happen to me are complicated in some way by my health. My anecdotes are often the type of stories that people don't know if they're allowed to laugh at, and sometimes a story I think is hilarious, will make people start pitying me, or worrying about my well-being. When people ask why I walk with a crutch, I just say I have lupus/autoimmune arthritis and leave the rest of it out to make it less complicated. But then sometimes that means I have to stop in the middle of saying something to explain about one of the million other illnesses, disorders and allergies I live with, because otherwise the story won't make sense. By the end of that, I've usually forgotten what I was trying to say in first place and the conversation has taken a bit of a depressing turn.

In a way it's really nice talking to people who don't know any of my medical history. Because then I can just be a person, and pretend the rest of it doesn't exist, at least for a little while anyway. But then when it gets to the point where I do need to start explaining, it just brings to my attention exactly how many things there are about me that are a bit left of centre. I was telling one of my friends that when I start thinking about all the things that aren't quite right with me, I realise I really should have been weeded out by evolution by now (again, the kind of comment that can make healthy people uncomfortable and chronically ill people crack up!)

So sometimes it's just easier to give up on trying to explain and start censoring my stories instead. For example, if I didn't know you that well, this is what I might tell you about my night last night:

I went to a play last night Second Afterlife. It's a clever play about a guy who wants to delete his facebook profile, but first has to enter the internet and confront the ghosts of his past online profiles. I enjoyed it a lot.

If I know you a little better, I might tell you this:

I went to a play last night Second Afterlife. It's a very clever play about a guy who wants to delete his facebook profile, but first has to enter the internet and confront the ghosts of his past online profiles. I enjoyed it a lot. On the bus home, a guy came and sat next to me and asked if he could pray for me to be healed. He was really nice, and while it didn't really influence me in any religious way, it did remind me of the kindness of strangers, which is always welcome. Then he asked me if lupus was a character from Harry Potter. That part made my day.

And, if I know you well enough to know you'll be okay with hearing it (or you read this blog) I'll tell you the whole story:

I went to a play last night Second Afterlife. It's a very clever play about a guy who wants to delete his facebook profile, but first has to enter the internet and confront the ghosts of his past online profiles. I enjoyed it a lot. On the bus home, a guy came and sat next to me and asked if he could pray for me to be healed. He was really nice, and while it didn't really influence me in any religious way, it did remind me of the kindness of strangers, which is always welcome. Then he asked me if lupus was a character from Harry Potter. That part made my day.

Then, while I was walking home from the bus, I started experiencing some really strong pain. I kept walking, because... well what else can you do? But walking got harder, I got dizzy and then I collapsed... about 100 meters from my front door. I lay there for a while, and it really sucked, but then I looked up, and I was lying under this beautiful tree and I could see the stars. Somehow that didn't feel so bad. Then it started to rain, and that made it suck again.

Obviously it all worked out okay in the end. I was still in one piece, and after a while I felt well enough to get up and walk the last 100m home. Therefore most people don't need to know about this, even if I think it's kind of funny. I can edit these parts of my life out if I don't feel like trying to explain them.  

I think the issue can be that sometimes when I do start telling people more, I worry that they will misinterpret why I'm telling them. I don't want them to end up feeling uncomfortable or think that I'm expecting them to help in some way. Generally when I do tell people about a fall, or something similar, what I want is for them to laugh with me about it (and maybe make a few sympathetic noises while I process what's happened.) 

Perhaps I need to stop thinking about it in terms of whether someone is a "healthy" person or not. After all, I'm not sure of the last time I met someone who didn't have at least one struggle they're dealing with. I just need to trust that if people know me well enough for me to be telling them the full story, they'll know me well enough to know they're allowed to laugh.  

Thanks for reading,
Little Miss Autoimmune

Tests, Tests, and more Tests

I don’t like going to the doctor, when new symptoms appear. Don’t get me wrong, my GP, nurse and Rheumatologist are all lovely, and I am so thankful to live somewhere where I do have the option to go to the doctor when I need to; I just dislike the process that follows once something new happens. Because these diseases can present in such a range of ways, basically anything that happens could be down to one of them. It also could be down to a range of other diseases or infections, some of which could be serious if left untreated. So we go through the process of running tests, and usually one of two things happens:

1. The tests all come back normal, and the symptoms get put down to one of the diseases I’ve already been diagnosed with, or 
2. The tests don’t come back normal, the results are abnormal but in some non-specific way that doesn’t point to anything clear-cut… and the symptoms and test results get put down to one of the diseases I’ve already been diagnosed with.

 

It’s often tempting to not go in to see the doctor in the first place. In fact, I do tend to sit on symptoms for quite a while, before finally dragging myself off to an appointment when it becomes painfully obvious they aren’t going away. The problem is, the times I have decided things are just down to one of my autoimmune diseases, and not gone in at all, those have been the times it actually was an infection or something new that really did need to be dealt with.

 

The week before last, I had the MRI I wrote about a few months ago. As I was filling out the forms, ready to go to the appointment, my dad reminded me that a number of years ago when I had to have an MRI I developed sudden claustrophobia, panicked and had to be pulled out. Fortunately this time I didn’t panic, and the whole process was a lot less traumatic than I thought it was going to be. Really the only problem was that after lying completely still for so long, my joints all locked up so that once I was allowed to move again, I couldn’t. My blood pressure did also crash when I stood up, but judging by how quickly the radiographers picked up the signs that I was about to flake out, I’m not the first patient that has happened to!

 

I haven’t had the results back from it yet, but I’m taking that as a good sign, as I’m sure they would have been in touch pretty quickly if there was something wrong. 

 

The other thing that’s been happening lately is that I’ve been having some irregular heart rhythms, one episode in particular of which was quite unpleasant. This afternoon I'm having an ECG, to check on that, and last week I had some extra blood tests done along with my monthly labs. The process was complicated somewhat by the fact that my severe latex allergy meant the blood test nurse couldn't wear gloves, but her severe alcohol swap allergy meant she couldn't take blood my blood without them. The ridiculousness of that situation caused some confusion, but in the end she did manage to find a single nitrate glove, and completed the test. After fifteen years of regular blood tests, the vein in my arm is a tad scared and the blood tests, which used to be painless, have started to hurt quite a bit. The regular tests are to check inflammation levels, liver function, blood counts, and electrolytes. While these have all been out, on and off, for the past few years, my GP said they’ve all be normal since the beginning of March, so I may be able drop back to having them 3 monthly instead if my rheumy agrees, which would be fantastic for my poor wee vein.   

 

That should be the last of the tests for a while, then it’s just Hungry, Hungry Hippos until the results come back. Perhaps it’s just because I’ve been reading Eric Hill’s lift-the-flap Spot books to my nephew lately, but the whole thing has started to feel a little bit like a game of hide-and-seek.

 

        Is something wrong in your brain? No, keep looking Spot! 

        Is something wrong in your blood? No, keep looking Spot!

        Is something wrong in your heart…?

 

If nothing else, maybe it’ll inspire my next picture book.

 

Thanks for reading,

Little Miss Autoimmune

UPDATE: After posting this this morning, it turned out the doctor was able to review my ECG and give me the results pretty quickly after the appointment, so no Hungry, Hungry Hippos/waiting game on that one. It was normal, so no obvious problems there. Yay!