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! 

 

Things Writing Taught Me About Living with Chronic Illness (and vice versa)

I wrote my first novel manuscript "See No Evil" between the ages of 13 and 16. It is, by a number of people's accounts, one of the funniest novels ever written. It's just a pity it was supposed to be a psychological thriller not a comedy.

When I got really ill as a teenager, and had to leave school for a while, my mum suggested that I finish writing it and send it off to a local children's book competition. The entries were read blind, a fact I think worked mercifully in my favour, as I now cringe in embarrassment at what the judges must have thought reading it against the entries of adult, professional writers. That particular manuscript will probably never become anything other than a file on my computer, but I have since written others that will hopefully turn into "real" books at some point (with some luck and hard work.)

Writing all of them taught me several things, one of the most important being: you cannot write a novel in day. Even if you are an extraordinarily fast typist, or dictating your work, trying to write 50,000+ words in a day will leave you with crippling RSI or an MIA voice. Writing a novel has to be done in chunks, whether it's a little bit every day, or a little bit whenever time allows. I wrote that first novel primarily in the school holidays, so there were long gaps between picking it up and putting it down. Finishing it was a matter of not giving up, doing it a little bit at a time, even if it felt like it was taking forever.

These days, a lot of tasks take me a long time. When I have people coming over, I have to start cleaning up several days in advance because I can't do it all at once. And no, my apartment isn't excessively dirty or untidy! Making soup is a three day process - Day One: Chop onions, celery and other fresh vegetables. Day two, boil them in stock, along with any canned or frozen additions. Day Three: Puree, and you finally have soup. There used to be a fourth day - strain the soup before serving, but then I realised life is short and I'm not on an episode of Master Chef (plus I tell myself the stringy bits are extra fibre.) I'm often asked "Can you do stairs?" and the answer is "Yes, it's just takes a while." The same goes for getting in and out of cars.

The thing is, none of these tasks would get done if I didn't start. Nor would they get done if I gave up in "chapter one." Sometimes you have no option but to keep going - there's no alternative but to keep climbing when you’re halfway up a staircase - but sometimes you do have the choice to give up on tasks, and the motivation to keep going has to come from you. As tempting as it may be to try and do everything all in one go, it's just not going to happen when you're ill. Even if you manage to push yourself enough to complete the original task, you're going to screw the rest of your week up by making yourself too tired to do anything useful the next day. Writing has taught me the patience to pace myself. Or perhaps chronic illness has given me the patience to write.

Another thing writing has taught me is that there doesn't always have to be a tangible reward for the things you do. Ask the majority of writers if they make enough money to live on, and the answer will be no. Ask them why they still want to write, and they'll stare at you with a vaguely perplexed look indicating the idiocy of the question and answer something along the lines of "How can I not?" The writing itself is what drives most writers, not the possibility of monetary success (though I bet they'd all say a bit of that would be nice too.)

I've made some money from writing and associated work. Not a lot, not even a medium amount, just some. But that's never been a reason not to do it.

I don't know if I will ever be well enough to be able to work enough hours in a week to support myself financially - in any job, not just writing. I do know that I need to work at least a few hours a week, and spend at least a few hours writing, to keep myself sane. The monetary rewards from those hours are not a lot. But the intangible rewards are priceless.

Finally, you don't have to know what's going to happen for things to work out okay. Each time I've sat down to write a novel, I've had an idea of a few scenes that I want to include before I get to the end, but haven't had a clear idea of how to fill in the blanks in between them. Invariably, I've ended up writing other scenes that turned out better than the ones I originally had in my head, writing thousands of words of rubbish that made no sense and had to be deleted later, and followed plot bunnies for pages at a time in the hopes that they'd lead me somewhere useful. At the end of it, I've either finished a "manuscript" or written a "something that will never see the light of day, but taught me some lessons anyway."

I don't know what's going to happen with my health. Not just long term; most of the time I don't even know what's going to happen with my health in the next couple of hours. But so far it's all worked out okay anyway. I'm hopeful that things are going to continue to work out okay, even if my story is turning out to be something quite different to the one I thought I was living originally.

Thanks for reading,

Little Miss Autoimmune.

Rest in Peace, Moira

A few years ago, I found having these illnesses a very isolating experience. I'd gone to a support group once or twice before, but hadn't really connected with anyone. Then I went to one, and spoke to a woman, Moira, who felt the same way. She and her husband gave me a lift home, and on the way we talked about how it would be good to be able to meet up with more people in the same position, and we exchanged contact details, but left it at that.

A few months later, a couple of other women, Sarah and Alice got in contact about meeting up, and I passed the details on to Moira. The four of us met for dinner. Meeting up was a bit awkward, and we described the experience as being a little like going on a group blind date with strangers, but out of it, Sarah and Alice set up the Super Young Arthritics of New Zealand facebook which has become a support to many people, not only in New Zealand but around the world.

Not long after that meeting, I was admitted to the rheumatology ward overnight, as I was starting on a new medication and had a high potential risk of a bad reaction to it. I was pretty scared but knowing other people who'd been through the same sorts of things made the experience easier.

This week, Moira passed away. After those two meetings, I only met up with Moira in person a handful of times. I didn't know her well, and I hadn't seen her for far too long. She came into my life at a time when I really needed to meet someone who understood, and meeting her led to many people gaining support and understanding, so I will always remember her for that.

The night I spent on the ward, I wrote this poem about the experience, and about that meet up.

Go well, Moira.

90 at 25

My body becomes a picture

of a skeleton
with hands
bigger than its head
and an ellipse
for a pelvis

The doctor records
my pain
with scratches
of a blue pen
and draws bubbles
of swelling
on my fingers and wrists

I’m asked
to consider
whether I would
prefer quality
or quantity
of life

I make friends
with a superhero
who describes his body
as Gotham City
and his rebelling joints
as mistaken Bat Signals
calling an overzealous
immune system

I go on a group blind date,
no red carnations
to recognise each other.
We watch for those
with limps
or extra metal
appendages

We shy away
from our elders.
We read our future
on their palms
when their clam-shell fingers
are pried back
revealing distorted knuckles
and shortened lifelines

Forgetting You're Sick



Me and Rebecca having High Tea
(photo taken by our other lovely friend Andrea)

My lovely friend Rebecca from In My Body and I were talking on Facebook chat the other day (at 2am – neither of us could sleep) and this is part of the conversation we were having:

Me: Do you ever feel like sometimes you are so busy being sick, and managing living being sick, that it's almost like you forget you're sick until there is something... (usually something quite small) that you're irritated about not being able to do. And when you're sitting there being irritated about not being able to do it, you suddenly remember all the other things you can't do and it's like you're "remembering" that you're sick?

This was something that I felt very odd about saying. It sounds so stupid to say that I forget that I'm sick when it's a constant and ever present factor in my life. There was a part of me that wondered if Rebecca was going to come back with a comment like "Uh, no. Not really." But this was her reply:

Rebecca: I hear you! I sometimes also get this thing were I have been sitting still and I'm not in much pain and there is energy (or maybe it's motivation) in me to get up and do something and so I get up and go to do something and it's really hard to do and I'm like 'What's wrong with me? I'm so unless at this' and then I remember I'm sick.

It was such a relief to realize that someone else felt the same way I did. We went on to talk about the fact that we both have dreams where we are not sick, but are still experiencing pain. Our dreaming brains have invented monsters, attackers, insects and (really unprofessional) surgeries to explain the sensation of pain without having to admit to ourselves that we’re living with chronic illness and disability. Similarly, I often wake up in the morning and panic because I can’t move. My brain strays to thoughts of strokes or paralysis before I finally remember that this happens every morning. My joints are just stiff, not paralyzed, and will eventually start moving again once I calm down. 

But yet, it’s still so easy to forget it all in the in-between moments. We’re forever healthy people trapped inside sick people’s bodies.

Sometimes I think living with a chronic illness is like a prolonged grieving process. You lose the ability to do something or develop a new symptom, grieve about it for a while, learn to adapt find and that life is not so bad, forget about it for a while, then remember it and start the process again.

While of course I would never wish for anyone else to be in pain or experience the frustration of forgetting/grieving about it, it was almost exciting to realize that Rebecca felt the same. And that’s why I'm sharing this here. If you’re busy swinging around on the roundabout of repeatedly “forgetting” and “remembering” that you’re sick, try and also remember that you’re not alone. There’s a least two of us that feel exactly the same.

Thanks for reading
Little Miss Autoimmune

One Hundred and One Small Problems

“How do you do up your bra when your joints are swollen?”

After I got over the shock of being asked this question out of the blue the other day (and stopped laughing) I admitted I don’t. When my elbow/hand/shoulder joints are too stiff or sore to reach behind my back, I skip the bra and just opt for clothing that makes that fact less obvious. This is just one of the many small problems I face living with autoimmune arthritis.

Often people focus on the big issues with autoimmune diseases – permanent disability, mortality rates, infertility, risk of infection. And don’t get me wrong, these are BIG problems, but there are hundreds of other small problems that I, and others like me, face every day. Most of them seem insignificant in comparison to the big stuff. Some of these problems are even kind of funny, and make good anecdotes if told right.

I once went to a dinner party, and had to keep my coat on until a good friend arrived because I hadn’t been able to do up the zip in the back of my dress.

I once had to get the sales assistant to take the tag out of a top I was trying on while I was still wearing it - not because I was so desperate to wear it home - but because once I’d put it on, my shoulder froze and I couldn’t get it off again.

And a couple of non-clothing related ones: 

I once splashed a whole cup of water into my own face in front of a group of people, because my arm and neck spasmed at just the wrong moment. No-one saw the spasm. Nervous laughter ensued.

My leg once gave out while I was standing on the bus, and I collapsed into the lap of a complete stranger. Fortunately he thought it was funny too.

But most of the daily problems are not so funny. 

Tonight I took ten minutes to break the seal on a jar of pasta sauce. When I finally got it open, the jolt hurt my wrist so badly I literally screamed from the sudden pain and started crying.

Yeah, not such a great anecdote. So now I’m sitting here with my wrist in a splint and typing this one handed, while I recover enough to use the pasta sauce to make my dinners for the rest of the week. These kinds of problems make even the simplest tasks a lot harder, and often problems involve asking myself a lot of questions before I do anything:

·         Can I carry this without dropping or breaking it? If I carry it for too long will my hand “lock” around it, so I can’t let go? Will my handbag be too heavy if I add tissues/water bottle/medication/eye drops etc. etc. etc.? If I don’t bring them and end up needing them, will I be able to manage, or will I have to come home early? 
·         Can I go to ---insert place name--- since my symptoms mean I can’t drive? If I go by bus, will I be able to get on and off again safely? When so-and-so says it’s within walking distance of the bus stop, is that my walking distance or a healthy person’s walking distance? If I walk/bus will that use up all my spoons, before I even get there?
·         Will I be able to dress myself without assistance if I buy this piece of clothing? Will people notice that I haven’t been able to wash/brush my hair today? Can I open my jaw enough to brush my teeth today? Can I brush my teeth anyway, since my mouth is filled with ulcers? If I don’t brush my teeth, is that tempting fate for infections? Should I just stay home?

Still not as significant as the big stuff, right? Well, if there were just a few of these problems, it wouldn’t be that big of a deal. But when there are hundreds of them every single day, it’s easy to grow weary of them. Even the funny problems, aren’t so funny when in the back of your mind there’s one more looming question:

Why can’t anything ever be simple?

Thanks for Reading,
Little Miss Autoimmune

I wrote this post as part of the lead up to the 2014 World Autoimmune Arthritis Day online conference (6am ET/USA May 19^th- 5am ET/USA May 21^st) the theme of which is “A Day in The Life of An Autoimmune Arthritis Patient.” You can learn more about WAAD14 or register at http://www.worldautoimmunearthritisday.org/! REGISTRATION IS REQUIRED for the online virtual conference.

Flares, Fears and The Future

Life has been... too much recently. Too fantastic. Too overwhelming. Too awful. Too scary. Just too much.

I've had some really awesome things happen lately. Things that made me feel really good, and really proud of myself. I've met new people and had some great opportunities come my way, and for the first time in... well possibly forever... I've felt like yes, I know what I'm doing. Not only that, I'm good at what I'm doing. I've really liked myself, and felt happy. Not happy but... or liked myself except for... 

But the thing is, all of the big opportunities and good things happened at the same time. Which meant I was pushing myself to keep up with them all. Which was fine - good actually, because in a way that made me feel even more awesome. "Look at me go!" I was thinking. "No disease is going to hold me back!" And it truly wasn't. Though even before things got busy, my body had been telling me things weren't right. I had one week where I kept falling asleep in accidental naps every time I sat down. I pretty much lost an entire day at one point. 

And then all the deadlines etc. fell at around the same time, and true to form I didn't flare in the middle of the stress, because the adrenaline was carrying me through. I wasn't having accidental naps anymore, but now I wasn't getting enough sleep either. Pain, not being able to relax, and a few other symptoms were keeping me up all night. 

Naturally, I flared the minute the stress stopped. The day I handed in my play, my arms doubled in size with soft-tissue inflammation. By the evening, my joints had joined the party, and I could barely open my mouth as the side of my face had formed a lump where my jaw joint was swollen, and my other joints especially my spine were screaming in pain. Then the muscle spasms and tremors kicked off, and I found myself teaching a class, but not able to get up from the chair I was sitting in.

But I was still happy. I was still pleased with all the good things, and the fact that I was coping so well with the bad ones. It was terrifying when I realised I couldn't stand up, but I kept calm, came up with a plan for what to do about it and successfully put it into action. Even though I was getting sicker by the day, I was managing to keep on top of everything. 

When you're chronically ill, you're so often told to be grateful, and it's so annoying when other people say it. It's said as if it's something comforting, but all it does is make you feel guilty for feeling bad. When it comes from inside you, though, and not from someone else putting it on you, it can actually help. I was so thankful for the amazing things and people in my life - so I couldn't eat solid food? Look at how many yummy things I could turn into soup or smoothies, and really just having food at all is something to be thankful for isn't it? So I couldn't walk? I had amazing people willing to give me lifts places, or offer me advice and company on facebook. So I was in a sh**load of pain? How lucky was I to have had my joints be in remission for the last couple of years! This level of pain used to be my life all the time. And who could forget that the only reason I was flaring in the first place was that I'd just had a whole load of awesome things happen? I had nothing to complain about.

Then 4am on the Friday morning, I woke up in a lot of pain. When I sat up, I started vomiting, then fainted, and it kind of went downhill from there. Basically every time I was upright, I passed out, then vomited when I woke up - usually all over myself. In the morning proper, my dad took me to the doctor, but it was a real struggle for me to stay conscious long enough to get to the car, then when we got to the doctor's I collapsed in the parking lot and had to be wheeled inside, where I proceeded to vomit and pass out some more. I couldn't even keep water down, which meant I was dehydrated and my pee looked like a cup full of Fanta.

Believe it or not, I still felt happy. There were points, where I was screaming inside my head "This has to stop! I can’t do this anymore!" and I did start to cry because I felt so bad about vomiting all over the floor (and possibly one of the nurses) But I still felt really grateful for everyone taking care of me, and for how nice they were being. I was thankful I’d made it through all the deadlines before this happened, and everyone was assuring me I would be feeling a lot better soon. I was. They gave me a shot of steroids, and the wonderful thing about steroids is that though they have harsh side-effects, they work well, and they work fast.

So, with my newly-mostly-behaving steroid-filled body, I carried on. There were no more deadlines, so I wasn't pushing myself so hard. A good thing since I'd managed to pull several muscles during my escapades. I was already planning the next projects, but I didn't feel quite so good anymore. I started to feel unsure of myself, and even the simplest decisions like "do I want to talk to somebody on the phone tonight" felt too hard, and motivating myself to do anything was difficult. The things I had been looking forward to, didn't feel quite so exciting anymore.

For a while, I thought that I was feeling that way because I was actually unsure of the things I had coming up. But then I realised it had nothing to do with anything in the future. A lot had just happened, good and bad, and I hadn't had time for my mind to catch up. This wasn't a Pollyanna-type situation - I wasn’t forcing myself to feel positive, happy, or grateful, that's just, for whatever reason, what I was feeling. I kind of suspect I hadn’t really connected fully to what was happening, and had been living in a sort of pleasant denial. Then the reality of how sick I'd just been caught up with me. I remembered that no matter how well I manage things, I have a serious illness. While most of the time that's going to be difficult but do-able, sometimes it is just going to be scary and awful and there's no getting away from it.

I wrote the above about a week ago, along with several other posts which I’ve decided are too personal to post. The gist of them was basically that I ended up in quite a dark place for a while. I saw my doctor yesterday and she said it’s normal to feel depressed after a big health set-back. I felt like I was losing control of my body and it was hard for me to feel calm and positive about that, because it wasn’t an irrational thought. I did lose control of my body. My fears about the future, and the possibility of my diseases progressing were all brought to the surface, and it was hard to reassure myself when I knew that all of the things I was afraid of could easily become a reality. My doctor also pointed out that I’ve had some bad reactions to steroids in the past, and it’s likely they were influencing my mood. It’s also likely that my hormones were a bit out of whack and my Vitamin D dose was due.

The good thing was I recognised my thoughts were becoming a bit dire, and I sought help. I’m lucky enough to have friends and family who were able to be there for me, in person, over the phone, on facebook, and in some cases without even actually doing anything. Just in knowing that I could contact them and they would understand helped me. I’m still not back to myself, but I am feeling better, and my doctor is arranging for me to see a counsellor to talk through some of the fears this has brought up. I’ve been a little reluctant to talk through these issues in the past, as I’ve noticed many people’s automatic response is to try and reassure me that the things I'm afraid of won’t happen. This isn’t helpful, because it’s just not true. The things I'm afraid of may or may not happen, and I’m by no means saying I definitely think they will, but assuring me they definitely won’t is just an empty promise. What I need help with is not dwelling on those fears, not deluding myself into thinking nothing bad will ever happen to me.

Right now I am (mostly) in control of my body. I am functioning, and living a pretty good life. I don’t want to miss all the awesome things my present has to offer, just because I’m too focused on what the future may or may not hold. 

Thanks for reading,
Little Miss Autoimmune

Capable with a side of limitations

"J Hook" in Action

When I was asked to write a post on the topic of “A Day in the Life of an Autoimmune Arthritis Patient”, I have to admit my mind went a little blank. I didn’t want to write about a really bad day, because when I talk about the bad stuff, people often get the wrong idea. They expect me to be completely bed-ridden, or at least much worse than I am, so when they see me they find it hard to reconcile their mental picture with the one they see in front of them. But I didn’t want to document in detail a good day either, because that would give the wrong picture too, and it would then make it harder to explain to people why I can’t do certain things on certain days. 
 
The truth is, there is no typical day for me. I can be fine one day, and really not the next. But there are a lot of things I do every day – good or bad – that healthy people probably don’t. Every day I have to plan, pace and prioritise tasks, so that I can make sure I can meet all my responsibilities without letting anyone down or making myself ill, but Christine Miserandino’s Spoon Theory can explain that better than I ever could. Overall, there are a lot of choices I have make, that healthy people probably don’t and there are also a lot of tasks that I adapt to make easier, mostly without even thinking about it.

I think the fact that I do these things automatically, means that most people don’t even realise I’m doing them. It’s kind of like a duck swimming, peddling frantically underwater, while keeping up the serene, gliding appearance on the surface. I don’t think anyone would ever describe me as “serene” or “gliding” but I probably do manage to appear more capable and independent because I employ a whole lot of “cheats” to situations behind the scenes. 
 
This is by no means a comprehensive list, but here are some of the “cheats” I use to make my days both easier and more productive

·         I consider an electric can opener and electric mixer kitchen essentials, not luxuries, and I also use specialty tools like a jar opener and J Hook*. I don’t bother to try opening bananas, jars, tins, or plastic bags the normal way anymore. Plastic bags and jars can be opened with the help of a pair of scissors (to break the seals on the jar) then bracing the jar against your body, and a banana is most easily opened by cutting part way through with a knife.
·         I stand with my back against “push” doors, and shuffle backwards to open them, and I open “pull” doors a little way with my hand, then use my knee or elbow for more leverage to get them properly open. Apart from my front door, I don’t ever shut the doors in my apartment fully, so don’t have to turn the doorknobs to get them open. I also use my elbows and knees to close cupboards, drawers, and the oven door.
·         I cook big meals, so that I only have to cook once a week and have a supply of left overs for when I don’t feel well enough to cook, or just don’t have the “spoons” at the end of the day.
·         During applause situations, I clap my “good” right hand against my left forearm, because my left hand and wrist can’t do clapping.
·         I use voice recognition software for typing when it hurts too much, and I switch the buttons on my mouse over every so often, so I’m not over-using the same joints.
·         I keep on office “wheely” chair in my living room, which I use as an improvised wheelchair to get to my bedroom if my leg gives out before bedtime. Tip: if you ever have to do this it’s easier to sit on it and push yourself backwards with your feet, rather than trying to make it go forwards.
·         I use water bottles, or mugs with a large handle, rather than glasses which require a proper grip.
·         I always buy hand bags with an across-the-body strap, so I don’t have to carry them in my hands. When I do have to carry things, I tuck them under my arm, or loop the handles of shopping bags over my forearm.
·         I only ever buy pre-grated cheese, and pre-crushed garlic. They're just going to go mouldy waiting for me to use them otherwise. 
·         At night, I often fall going to or coming back from the bathroom. I used to fall right next to my bed, which was incredibly demoralising. I could tell, even in the dark that I was so close to it, but wouldn’t be able to pull myself up. So my cheat for this: if I’m past a certain point in my room and I start to fall, I don’t try to stop it but just propel the fall forward as much as I can. If I’m lucky, I land face down on the bed, and then I laugh about it a lot. If I’m not so lucky, I land on my knees next to the bed, but that’s still easier to pull myself up from.
·         I listen to music while doing a lot of tasks, because I find distraction is one of the best forms of natural pain relief, and I can cope better if I manage to keep my mind off the pain for longer.
·         I always aim to leave the house 25-30 minutes before my bus goes. On an average day, the walk takes 16 minutes, and on a really good day it can take less than that. But I have to prepare for the fact that until I start walking, I can’t tell for sure what type of day it is. This way, I don’t miss the bus, even if it turns out to be a really bad day, and if it happens to be an especially good day, there will probably be an earlier bus I can catch anyway.
·         I usually eat soup or smoothies for lunch, so my poor jaw joint gets a rest from having to chew too much.
·         I know where the lifts are in most public buildings. If there aren’t lifts, I make everyone go ahead of me on the stairs so that I can go as slow as I’d like to. Every so often there will be someone trying to be helpful, who will insist they don’t mind waiting. I’ve learnt to stand my ground, and make them go first, because no matter how much they don’t mind, I will still feel compelled to force myself to walk faster in order not to hold them up.
·         I use Molly Stick even on good days, just in case things go bad suddenly. This happens a lot, but Molly Stick means I can still get myself home or to a taxi safely.
·         When I stop at street crossings, I take the weight completely off one of my feet to give the joints on that side of my body a rest.
·         I wear wrist splints at night to stop the pain getting really bad while I sleep, even if my wrists don’t hurt when I go to bed. This gives me a better shot at a good night’s sleep, and functioning hands in the morning.
·         If I’m standing talking to someone, and I start to feel dizzy, I scrunch my toes up to try stop myself passing out. If it seems like my leg is about to give out while I’m teaching, I press my palm hard flat against the desk, and shift my weight on to the other leg. I can do this without alerting anyone to there being something wrong, and while still concentrating on what they’re saying.

This was supposed to be a short list, but the more I wrote, the more things I thought of. There are many, many more, but I think this is enough to give you an idea of the kind of things an autoimmune arthritis patient might do in their day, just to make it through.

Thanks for reading,
Little Miss Autoimmune

* a tool for opening pull tabs, found in disability supply shops.

Living in Bucket List Mode

Don't be alarmed by the title - I'm not dying, or at least not any faster than the usual!

Some stuff has been happening with my health, and I haven't posted about it for a couple of reasons. One because it's still all in the stage of "this will probably all turn out to be nothing" with only a slight possibility of it turning out to be "something", and two because as is just about always the way in life, ALL OF THE THINGS both good and bad happen at the same time, and finding the time and spoons to sit down and write a blog post becomes of low priority.

In the past when things have gotten bad with my health, I've tended to feel quite closed off towards new things or people. I never want to take on something new, or start a new friendship, if there's a chance that I will end up having to abandon it and letting people down. But as I say, when my health is at it's worst, that's when the good things tend to happen as well. New ideas, opportunities, or people appear in your life, right at a time when you're not sure if you're well enough to fully commit to, or appreciate, them.

In the past few months, I've had some really cool work and writing opportunities present themselves in my life, and this time around I've felt a lot more open about exploring them. This is in part because I've been thinking a lot about bucket lists lately. Not just for things I want to do before I die, but for things I want to do before I lose the ability to do them. I've come to accept the fact that my diseases may well progress. This may mean that I lose functions, or find things a lot harder to do than I do now. I'm already seeing this. As my joint symptoms have become active again, I'm finding it more and more difficult to do tasks that were easy a few months ago. But they're not impossible yet, so I'm keen to keep experiencing all life has to offer while it stays that way. I'm living in Bucket List Mode.

I'm also more open to exploring opportunities now, because I know myself well enough to be confident that I will do everything possible to avoid letting other people down. My doctor told me the other day that she thinks I've always been very honorable in the way I handle my diseases in relation to other people. I hadn't really thought of it like that before, but she's right: when I take something on, I do what I can to see it through, even if I do become really unwell during the process. And if it gets to the point where it's absolutely not possible for me to continue, I do my best to lessen the impact of that on other people. So even if this does turn out to be "something" I can still feel reasonably confident that I won't end up letting anyone down by taking these new things on.

So here's the deal with my health at the moment. A few weeks ago, I had an odd episode where out of nowhere I experienced a sudden-onset, blinding headache, and started vomiting - hugely bad timing, as I was away for a hens weekend at the time. As a non-drinker, I didn't think I would ever find myself vomiting uncontrollably while dressed in a Big Fat Gypsy Wedding costume and tiara, but there I was. I guess in a weird way that's a life-experience to cross off the list! I assumed at the time that it was down to my wonky-donky blood pressure, or perhaps just the heat. But over the next week I began to experience some other weird and slightly alarming symptoms. I struggled to hold a conversation, as I couldn't find words or forgot what I was saying. I was having trouble reading and writing, and couldn't work my computer. Most confusing, I managed to get on completely the wrong bus, despite always catching the same one. I wasn't all that worried until people kept starting sentences with: "Now don't worry, but..." (there's nothing that tells you there's something to worry about, more than people telling you not to worry!) so I made a doctor's appointment.

By the time I got in to see my GP, things had improved, and I was more or less back to normal. It's quite likely that we won't ever know what caused this episode. My GP said it could be down to my blood pressure, as I'd thought, though it was normal at the appointment, or perhaps an atypical migraine, though the headache was bi-lateral. The slightly more concerning possibility she raised was of it being Cerebral Lupus (inflammation in the brain, caused by SLE.) She said she has another SLE patient the same around the same age as me, who's experiencing very similar symptoms, though her's have been reoccurring episodes whereas this was a first for me. She also gave me the "now don't worry, but..." speech, so I know that this possibility is not exactly ideal. The plan of action is for me to have an MRI at some point, to see if we can figure out what's happening. Unfortunately my insurance will cover an MRI but only if I'm referred by a specialist not my GP (yep, we have insurance issues in NZ too!) and the public system will take a really long time.

So for now I don't really know. I'm honestly not really that worried, in fact I'm more concerned about the idea of actually having the MRI than of any possible negative results. I don't really think it's going to show anything. I strongly suspect these symptoms will remain a mystery, but even if it does turn out to be something I'll cope with it. In the meantime, I'm cramming in all the good bucket-listy things, because either way, there's a lot of them to fit in.

Thanks for reading,
Little Miss Autoimmune

The Vampire's Cousin

Stitches ready to come out post-biopsy

For me one of the most inconvenient symptoms of SLE is being photosensitive. If I’m in direct sunlight for too long, I come out in large wheals and often flare very badly afterwards. Added to that, the medications used to treat SLE actually increase this sun-sensitivity, and also increase the risk of developing skin cancer. Not so great when we already have such a high rate of melanoma in New Zealand from the hole in the ozone! There’s only really one way to deal with it – avoid being in the sun as much as possible, and slip, slop, slap and wrap when you can’t avoid it. 

You may remember last year I had a biopsy done on a rash on my neck. At the time, my dermatologist thought it may be one of the autoimmune forms of folliculitis, but in December I got the biopsy results back from my GP, and it didn’t show folliculitis but instead showed that the sun sensitivity was likely getting worse. It also probably wasn’t helping that I’d been getting a bit lax about covering up.  

It was really weird timing, as I’d just finished reading What We Saw in the Dark – a novel about three teenagers living with Xeroderma pigmentosum (a rare genetic disorder, in which the ability to repair damage from UV light is deficient) who spend their entire lives living at night, trapped inside during daylight hours. I’d also just met another lupus patient, whose skin, head to toe, had suffered permanent visible damage from sunlight. So all in all, I didn’t feel too sorry myself, as the universe seemed to be spelling it out to me that it really could be so much worse. It was also a bit of a reminder that I do need to take this more seriously, as I want to try and avoid the kind of skin damage this other woman had experienced. 

I’ve been being a lot more careful about not leaving my skin exposed when I’m outside since, which has led to a few “interesting” outfits recently. I did, however, get the best compliment the other day when I attended a friend’s outdoor wedding and she exclaimed “Wow, you’ve actually managed to look normal!” so I think I’m starting to get the hang of it now.

I’ve noticed, that if the subject comes up – which it does when people wonder why I’m piling on on long sleeves, scarfs and hats in summer – I seem to be answering the same questions over and over. I don’t really mind that, but at the same time, I thought it might be easier to set up a sort of FQA on the subject.

What happens if you go in sunlight?
I get Uticaria, which is basically a fancy word for hives. These come up as big painful, itchy wheals and blisters. They then turn into an eczema-type rash, which often then gets infected or ulcerates. Nasty generalised SLE flares usually follow. I also get sunburnt a lot quicker than normal, and have a high risk of skin cancer

So… if you go in sunlight, will you like die?
No, I’m not actually a vampire. More like a vampire’s distant relative.

Aren’t there things in sunlight that humans need?
Yes, the main one being Vitamin D. Having low Vitamin D levels can have an effect on mood, energy levels, and can cause a whole host of health problems. There are some food sources of vitamin D, such as mushrooms and fortified dairy products, but from what I understand if you’re not getting enough from sunlight for whatever reason, it’s best to get it from a supplement. I take vitamin D tablets twice a month, and feel a lot better for it.

Don’t you get hot, being covered up all the time in summer?
Yes, but the reality is it’s a choice between covering up and dealing with the heat, or not going outside at all. I try to arrange things so I can stay inside during the middle of the day, but sometimes I can’t, and covering up with clothing and 50+ SPF is the only way around it. Sometimes this means that I won’t come to events that are held outside, or I may be a bit antisocial at barbeques etc. and sit inside by myself.     

Doesn’t that thick sunscreen mess with your skin?
Let’s just say I’m not going to be doing any cover girl ads anytime soon. This is one of the big reasons I wear a lot of clothing, because it cuts down on the amount of sunscreen I have to use, though in some situations I do have to use sunscreen under my clothing as well.

But don’t you ever just want to sit in the sun?
Personally, sunbathing was never something I particularly enjoyed before I got sick, so this isn’t really something I feel I’m missing out on. I get why this would be a big deal for some people though. Unfortunately, the reality is that when you’re living with chronic illness, there are sometimes going to be things that you want to do, but can’t and you just have to find a way to be okay with that.

Thanks for Reading,
Little Miss Autoimmune