Tuesday, February 21, 2012

Just another day.

Sometimes it worries me how quickly things become commonplace when you’re sick.

Last night, I was spitting blood into the sink again. A few years ago, I would have been terrified to find my mouth was bleeding profusely for no apparent reason. Now it’s just an annoyance.

As I rinsed the blood away, I started retching, then threw up in the sink. Again, I feel this should have bothered me more than it did. Admittedly, I did have a small moment of panic because the vomit was bright red (I know, great mental pictures in this post!) but once I remembered I’d been eating berries earlier I just cleaned the sink and went to bed.

I’m the girl who didn’t throw up once between the ages of 14 and 25, even when I had food poisoning in that time. Now I sleep with a bucket beside the bed every night, just in case.

Lately I seem to have developed yet another fun new symptom. On Thursday, I woke in the night to find the side of my face was swelling up. My lips and tongue soon followed suit and it was getting a little hard to swallow. When the antihistamines I use for my latex allergy didn’t do anything, I phoned my dad and got him to take me to A&E. After a couple of hours and some more antihistamines, the swelling had gone down enough for me to go home, but I was no wiser as to the cause.

Night before last, the same thing happened again – face, lips and tongue swelling. I didn’t go into A&E this time, but just took the antihistamines and kept in text contact with my dad until the swelling went down. Last night I was sitting in a meeting at work, when I noticed the inside of my lip was covered in lumpy blistery things. A few minutes later, my tongue had swollen up again. I got up and left the meeting, and one of my colleagues followed me out. I tried to tell her I was fine, but what came out was “thigh sthmine” (she laughed a lot!) Less than two minutes later though, the swelling had gone down enough for me to talk clearly, though I was still adding a few ‘s’s to words.

I don’t know what’s causing this. Initially, I thought it was an allergic reaction, but the last one swoll up and then went down again so quickly I don’t know if that’s possible. The only common factor seems to be heat – first one I was running a slight fever, second I’d just had a hot bath, third, the office was really hot – and it does seem to get better when I move somewhere cooler or drink water, so maybe it’s that. I don’t know.

Though I do spend a lot of time analysing these situations afterwards, they worry me less and less. My colleague was confused as to why I’d left the meeting. As she said “when there’s a chance you might choke on your own tongue, you stay with people!” I was really more concerned that I might accidentally spit my water out, if I tried to drink and didn’t want to do that in front of people. So I left.

I wasn’t really worried about choking, or my throat closing up. After the first time, I didn’t feel the need to go back to A&E either. As I said – commonplace. I think if I panicked about everything, I’d be an emotional wreck – as would my doctor, as I’d probably never leave her office.

Though I don’t really want to be “used to” any of this stuff, it’s not really disrupting me as much anymore. In a way, it’s comforting to know I can spend my morning throwing up, swollen up, or stuck on the floor because my foot’s gone numb, then just go on with my day as if nothing’s happened. Of course, it would be more comforting if I wasn’t throwing up, swelling up, or getting stuck on the floor at all... but if I have to do those things, I’m glad to know I can do them without panicking.

- Little Miss Autoimmune

Friday, February 10, 2012

Moving House

I think everyone probably comes out of moving house with a few mystery bruises, but add to that illness and medications that cause easy bruising and you're going to come out a bit blotchy!

Anyway, apart from sore knees I seem to have survived moving with only minor flaryness - I was expecting a major one, but it hasn't arrived *knock-on-wood*

I'm now pacing my way through the last of the unpacking, and getting settled.

- Little Miss Autoimmune

Tuesday, February 7, 2012

Body Image

When it comes to having a healthy body image, I think I’m doing pretty well. Yeah, I know, it seems unlikely since hardly anyone out there is actually happy with their body. Sure, I have moments when I wish my hips were smaller or my boobs were bigger, and there are certainly still a number a photos I delete for having too many chins – but they’re just moments. Most of the time I’m happy with the way I look. Most of the time the time I think my boobs, hips and chin(s) are fine just the way they are.

Being sick affects my weight in quite dramatic ways. When my joints were really bad, I gained a lot of weight from inactivity and steroids have the fun side-effect of making you want to eat everything in sight. With coeliacs, I’ve been known to loose five or six kilos in a few days if exposed to hidden gluten, and my nausea can get so bad that I just stop eating.

One of the strange things I’ve noticed about being ill is that the days I feel the worst are often the days when people tell me I look good. For a while I thought maybe The Universe was being kind and just trying to make me feel better, but then I realised there are reasons why I get compliments when I’m sick. As my doctor said to me today, the version of the butterfly rash I get is actually a fairly “pretty” one, and when I’ve got it only mildly it’s usually mistaken for “rosy colouring.” I’m not a huge fan of make up – largely because I’d rather sleep an extra half hour than wake up to “put on a face” but if my skin is particularly rashy or I have huge dark circles under my eyes, I’m more likely to make the effort. Similarly, if I’m loosing my hair from illness or meds, I make the time to go to the hairdresser to get it tidied up or spend more time at home trying to make it look presentable. I live in Wellington (a very windy city) so on most days I go for a convenient but not-terribly-flattering bun hairstyle, but if my back and arms are flaring, I’ll wear my hair out.

And then of course there’s the weight loss.

A few years ago, I was on a combination of medications that really did not work for me. My kidneys stopped working properly and my blood pressure skyrocketed. I wasn’t nauseous but I wasn’t hungry EVER. I got palpitations, couldn’t breathe and passed out every time I climbed some stairs or even just took a shower. It took months for kidneys to come right and by the end of it all, I’d lost A LOT of weight.

I was in the supermarket few months later, and ran into someone I hadn’t seen for a while. She commented on the weight loss, and when I explained what had happened she joked: “Oh, what’s the medication? I need that kind of weight loss.” More recently, someone commented on how good I was looking lately then added: “almost worth having lupus.”

Um.... exactly how fat and ugly was I, that it’s worth having lupus to look “better”?!

These kinds of comments upset me. Yes, I know they’re jokes. No one really wants their kidneys to stop working, or to be diagnosed with lupus so they can loose a bit of weight, but it still frustrates me because it comes from a mentality of: Skinny is always healthy. Even more so: Skinny is always better. I hate this mentality. This mentality says it doesn’t matter how bad you feel, or what torture you have to put yourself through, as long as you’re thin at the end of it. This mentality says looks are more important than health. This mentality invariable says: You are not good enough.

I refuse to subscribe to this. I am good enough whether I am overweight, underweight, or somewhere in between. Most likely my weight will continue to bounce up and down as medications and illness wreak havoc on my body. Yes, I will probably lament any weight gain – I won’t lie and say it doesn’t upset me. That does not mean I will celebrate any weight loss if it comes at the price of me feeling like utter crap.

What I will celebrate is any signs of returning to good health, whatever weight it comes at.

Thanks for reading

Little Miss Autoimmune