Sunday, May 7, 2017

Yes, You Still Have to Count Spoons.

I’ve been having a lot of trouble counting spoons lately. Usually when I start to have problems with this it’s because I’m feeling really awful, and scraping together enough spoons to do even the simplest tasks is hard. This time, it’s kind of the opposite problem. I’ve been really well lately, and when I feel good, I tend to forget I still have restrictions on what I can do.

Sometimes this isn’t such a bad thing. It’s okay to test the limits a bit – do a bit more, and if it turns out it’s too much, scale things back. But something in me seems to have lost the plot a bit at the moment, and I’ve been booking in things that would be hard even for a healthy person to do, as if I think I’ve become superwoman. I find myself thinking “It’ll be fine! I have way more spoons now!” No. No, actually I have some more spoons now. Not enough to do everything and certainly not enough to do 15 hour days (what was I thinking!)

Fortunately every time I’ve overbooked myself recently I’ve realised it’s not going to work, and managed to reschedule things without letting anyone down, but it’s caused a fair bit of anxiety for me in the meantime. As with most anxiety, there were many factors involved, including that I was late on getting my B12 shot this month, but at the point where I had to simply walk out on something because I knew I was about to have a panic attack, I realised I had to get things better under control. So, I’m learning my lesson and getting better at carefully planning what I take on so I don’t keep putting myself in that position. It’s made me wonder, though, what’s brought on this sudden inability to spoon-count for me. Part of it is that’s there’s always an adjustment period to having more or less energy, as you figure out exactly what you can and can’t do now, but I feel like there’s more going on here.

Well, the obvious thing is that there are lots of things I want and need to do at the moment. I’ve been given lots of awesome opportunities lately, and I’m loathe to turn them down, but that does of course have to be balanced against the commitments and responsibilites I already have. Sometimes making those decisions can be really hard. Saying “no” can mean letting someone else down, missing out on something you really want to do, or both.

The other thing that’s been playing on my mind a lot lately is a feeling of being a “fraud”. When I’m feeling well, it seems less valid to say no to things because of my health. I’ve had times recently where I’ve said no to something then thought “Wait, could I have done that? Is it true that I’m not well enough? Am I actually even still sick?” After getting my blood test results back a few days ago, I can say yes, I am definitely still sick (nothing to worry about – just quite clearly showed a flare) but there’s a niggly part of my brain that makes me start to doubt myself.

I know very well that if this was a friend rather than me, I’d be reminding them that invisible illnesses aren’t always consistent and just because you can do something one day doesn’t mean you can do it the next. None of that means it’s not real. I also need to remind myself that part of the reason I’ve been well lately is because I’d been doing a good job of taking care of myself. If I start taking on too much, and let the healthy eating slip (guilty) don’t exercise enough (also guilty) and forget to take my meds on time (yep, done that a few times too lately) I’m not going to stay well. I also need to remember that I’m not a fricken super hero. If it would be a lot for a healthy person to do, then there’s no reason for me, a non-healthy person, to feel guilty that I can’t.

So, I’m going to do better at counting spoons, and try giving myself a break and stop accusing myself of being a fraud. I’m also going to forgive myself when I fail at times, take on too much, and have to spend a day curled up on the couch because I’m too tired to do anything else. Sometimes that too is just a part of this process and gettting mad at myself is quite frankly a waste of spoons.

Thanks for reading,
Little Miss Autoimmune

Tuesday, February 28, 2017

A PART OF ME HAS DIED!

I wrote the post below a couple of weeks ago. At the time, I'd just developed some unusual pain and changes to my skin, and had had some abnormal test results, so was starting down the journey that goes with that. From there, things moved pretty quickly. An ultrasound showed what looked like a lipoma (a benign, fatty tumor) just above my hip. Usually these are harmless, but there were some abnormalities so I was referred to a surgeon. Within days I had received an appointment time for the surgery.

It all seemed super simple. It would be an easy procedure, all over in 45 minutes, and I would only need local anesthetic, rather than general. I kind of couldn't believe that for once I had something easily diagnoseable, and even better easily fixable. While the abnormalities seemed a bit worrying, the prospect of the pain going away was enough to calm my concerns. There was a part of me that was even looking forward to getting it all over with.  

But when has anything to do with my health ever been simple?

I saw the surgeon today, and when he and the nurse saw the indentation on my skin, they both said variations of "Oh... that's not right," and very quickly came to the conclusion that this is not a lipoma. If it is a tumor, it would have to be a more nefarious form, but the more likely diagnosis is that some of my tissue has died (fat necrosis.)

There are a few possible causes for this, all of which are somewhat worrying.

Fat necrosis is sometimes caused by injuries. I do injure myself a lot - clumsy + issues caused by my illnesses - but I don't remember anything significant enough to have caused this. Given my sleep disorder, there is a possibility that I hurt myself in my sleep. I think this is unlikely, as I'm sure I would have remember something or at least found some evidence of an accident in the morning. If it was a sleep accident, then it's concerning for several reasons. 

I remembered today that I did have a really nasty black mystery bruise in that area a while back. It's possible that was from an injury I don't remember getting, or it could perhaps have been the early stages of the tissue dying, and I didn't recognise it for what it was at the time.

Another possibility the surgeon suggested is that it could be from having steroid injections. It's been a year since I had one, and I'm not sure if it was on the same side, so I'm dubious about this being the cause. If it is, then I'm guessing that may mean I'll have to drop steroids as a treatment option (I can't take them orally) and it does make me a bit worried about all the other injections I take on a regular basis. 

The final option the surgeon suggested was that it could be down to some autoimmune/lupus activity... not exactly ideal as this would raise the question of whether it's going to happen again.

For now, I don't know. Like everything, I may not get a clear answer as to what caused this. I've been referred for an MRI, and possibly a biopsy after that, to firmly rule out the possibility of a tumor. If it is necrosis, the surgeon has advised not removing the dead tissue as this would be a bigger surgery, and would leave significant scarring. While I feel self-conscious about the way it looks at the moment, I agree that it's not worth risking it ending up looking worse. I'm not happy that this means the pain won't be going away, but I have lived with pain to greater or lesser degree for most of my life. I just hope that it eases up a bit, so that walking isn't so uncomfortable.

I don't really know how I feel about all of this. Many of the same feelings I had when I wrote that last post have resurfaced, but I feel like I'm processing them better than I did two weeks ago, though I have been dramatically yelling "A part of me has died!" then having bursts of laughing and crying at the same time. Like I said at the end of my last post, this will pass. It will pass, it will pass, it will pass, and at the meantime I'll let myself enjoy the humour of the melodrama.

Thanks for reading,
Little Miss Autoimmune.  

Sunday, February 12, 2017

I don't know how to explain


I don't know how to explain what I'm feeling right now.

I don't know how to explain how utterly panicked I feel that I'm heading into another round of doctors appointments and testing. If I try to explain this, I know that the assumption will be that I am afraid of the results, but I know the results already. This will be another non-specifically abnormal thing, attributed to one of the diseases I already probably (but never definitely) have. I am just tired. So tired of the whole process, and just thinking about it makes me want to cry.

I don't know how to explain that I can't face the idea of there being a treatment option. The idea of a "safe" treatment means nothing to me now, because I have seen how much harm harmless-treatments can cause, and how much they've cost me in the past. Just the thought of it makes me begin to hyperventilate. I also don't know how to explain that I've fought really hard with myself to get to a place where I am okay with being me. Not me except for the illnesses, or the me I think I could be if a few things were fixed. Just okay with being me exactly how I am right now. Attempting to change things, even if it's for the better, means starting a lot of that work all over again. I don't know how to explain how devastating hope can be, when things don't work out, and that letting myself feel it is not worth getting crushed for. A treatment option is hope, and that just feels to hard to do again. 

I don't know how to explain how panicked logical responses to my feelings make me feel, because they remind me that my anxiety is not logical. That there are parts of me that will run to their own rhythm, and will drag me along behind no matter how calmly I ask them not to.

I don't know how to explain how trapped I feel sometimes, by my allergies, by my body, by the delicate balancing act I have to work on everyday. A small thing has upset this balance recently, and I haven't figured out how to put everything back into place yet. The contradictions of things that help one disease but harm another can be exhausting, as every action holds an element of risk. I don't know how to explain how I am constantly both proud of myself for continuing to function and terrified by every choice that allows me to continue doing that.

I don't know how to explain how little patience I have for people who mock or criticise the ways I choose to manage diseases they don't have and don't comprehend. I don't know how to explain how sick I am of justifying my diet, sick of trying to elicit some form of understanding and knowing that I'm not going to get anywhere because it's just more fun to mock paleo/gluten-free/anything-that-differs-from-the-norm than it is to take a moment to show some compassion. You don't need to believe it works to show some empathy for the desperation that is making people want to try it, you just need to let go of your need to be right.

I don't know how to explain that no one can help me with any of this, and that makes me afraid to talk about it, because all that does is make other people feel bad. And I don't know how to explain how that sometimes I just need to say it all anyway, and that's why I'm writing this down.

I don't know how to explain that I will be fine tomorrow. All of this will be easier, and I will feel okay again, but tonight it feels hard. Tonight I will be melodramatic, and write every feeling that comes into my head with the hopes of releasing them from me and letting them go.

There is nothing that I need, except to wait, and accept all of these feelings good and bad. As awful and desperate as I feel right now, there is also a calm part of me that knows it's all okay and that these feelings are temporary.

Tonight is hard, but tomorrow will be better.

Thanks for reading
Little Miss Autoimmune

Thursday, February 2, 2017

The Tortoise is Graduating!

I got an envelope with this sticker on it in the mail the other day, and I stood in my mail room and grinned. My smile wasn’t for the actual graduation. I won’t be attending the ceremony – I’m teaching that day, plus it will be a lot of standing outside in the sun and then hours of sitting, which is not terribly me-friendly. And it wasn’t for the qualification itself either – this is a piece of paper that qualifies me to do… well, not much really, other than the job I’ve already been doing for several years.

My grin was because I did it. I finished. It took me seven times longer than it would have taken a full-time, healthy student to complete, but I still did it.

I started this qualification – a diploma in creative writing – back in 2009. I completed one paper, before I had to drop out, because my health wasn’t good, and my mum was very ill at the time as well. It just seemed too stressful.

Dropping out wasn’t an unusual thing for me at that point in my life. My physical health and anxiety had caused me to drop out of pretty much every course – formal and informal – that I’d ever tried to take, and it was only due to incredibly supportive bosses (who suggested I take leave instead every time I tried to quit) that I had managed to hold down part time employment.

This time was slightly different though. I’d managed to complete the paper before dropping out. Even though I hadn’t finished the qualification all in one go, I had at least done enough to get that first lot of credits. In some ways, I think completing that first paper was a turning point for me.

Initially, this whole exercise was mostly just for my own interest, but over the last couple of years it became more important to me to finish. I work teaching creative writing, and having subject matter and adult education qualifications (will finish the adult ed. one this year!) will likely become important to continuing to do this in the future.

Over the next seven years, I completed the rest of the papers – one at a time, and sometimes with yearlong gaps in between. I had plenty of free time, but not always enough spoons to stretch to cover study, and trying to do assignments while flaring badly was painful and exhausting. There were many times where this all felt hopeless, and I wanted to give up. I felt like I would be studying for the rest of my life, and it was all beginning to feel a bit pointless. But then, I started to embrace life as a tortoise. It wasn’t going to happen quickly, but as long as I didn’t give up, I would eventually get there. One by one, I completed the papers, and now here I am, grinning at an envelope like an idiot.

Doing anything with chronic illness is often harder and slower, but sometimes that makes it just that much sweeter when you finally get there. I think graduating means more to me now, than it would have if I had completed the course that first year. It tells me not only that I can do the work, but that I can work through the hard stuff, even when it seems like I can’t at first.

If you’re in the middle of battling managing chronic illness and study and feel like giving up… it is okay if you do. It is a really hard thing, and sometimes saying enough is enough is the right choice. But you know what? You CAN do this. It will be hard and mostly likely slow, and there may be times where you have to pull out of one or more papers and come back to them later. But tortoises still make it to the end eventually, and man is it going to feel so good when you do.

Thanks for reading
Little Miss Autoimmune 


On a related, but slightly self-promotion-y note - some of the stories I wrote during my studies are now published in my first short story collection, Symbolic Death. You can get a free copy of it here.

Saturday, October 22, 2016

Can't someone else be in charge?

Yesterday I saw my gastro specialist. Despite the fact that I knew nothing would change at the appointment, I've been really anxious since I found out I had to go back and see him again. I couldn't entirely explain my feelings at first - this was the same specialist I wrote about in the pitfalls of hope, but this time around I wasn't hoping for anything. I knew that whether he gave me a diagnosis or not, nothing was going to change. My body simply doesn't work properly, and though there are bad days where I feel angry, frustrated and want to fight that, most of the time I'm getting better at accepting that it's just the way it is, and continuing to live my life, malfunctioning body or not.

When I've got my hopes up about appointments in the past, I don't think it's been so much about wanting a diagnosis or wanting things to change, but more about wanting someone to tell me what to do. To make the decisions about medication and other treatments. To tell me what I'm physically capable of without ending up stuck somewhere because my limbs stop working suddenly, or making myself sicker. To tell me which symptoms are serious and which I can ignore, and to know that someone else is looking out for anything life-threatening, so that that responsibility doesn't always fall on me.

I realised eventually, that the thing that was making me anxious about this appointment was having to confront the reality that the doctors don't know the answers either.

My GP told me that specialists don't like cases like mine. My illnesses and unexplained symptoms overlap so many different specialties, and so the instinct seems to be to try and pass me on to one of the others. They want clear cut answers and I am a blurry mess of symptoms and non-specifically abnormal test results (on a side note - does anyone else think "Non-Specifically Abnormal" would make a great T-shirt?)  I mean no disrespect to my medical professionals when I say that - they are all lovely people and very good at what they do. But they don't entirely know what to do with me. When you have a lot of health problems, you do end up mostly managing them on your own.

I don't feel qualified to be managing this many diseases - I mean if they were someone else's diseases no one in their right would let me be in charge. If the doctors can't figure it out, how on earth can I even begin to? At times I have no idea if I'm making things better or worse, and my medication list is so complicated that my pharmacists have made mistakes with it on a number of occasions. It does leave me questioning if I can possibly get it right when even the professionals can't always.

In a weird way, acknowledging my feelings about all this, made the appointment a lot less upsetting than previous ones have been. I went in there accepting that I wasn't going to get answers, but also accepting that it's totally understandable for me to still want them. 

So, what did happen at the appointment? Well... I'd like to introduce my new diagnosis Little Miss Pernicious Anemia.
Cartoon picture of a face with hair in pigtails and vampire fangs


Like her friends she is an autoimmune disorder, and in her spare time likes to attack the intrinsic factor (the thing that lets you absorb vitamin B12) in my stomach. Despite the synonym for deadly in her name, she is not life threatening so long as I keep up my B12 levels with supplementation.

This wasn't a surprise. I've had severely low B12 levels this year, and given my history of autoimmune disorders and the fact that the antibodies test was positive, I knew Pernicious Anemia was the likely cause. It doesn't really change anything, other than I will need to be on B12 injections for the rest of my life, rather than just as a temporary measure, and I may end up with further stomach issues later on. The specialist has suggested we also test for bacterial overgrowth syndrome, so in a couple of weeks I'll be spending the day at the hospital taking a breath test every half hour. Bacterial overgrowth is treatable in the United States, but apparently we don't use the same medications here in New Zealand, so if I have it, it might explain a few things, but again, the diagnosis wouldn't change much.

One really good thing that happened at the appointment though, was that the specialist told me that he thinks my attitude towards my health is very realistic, and that I seem to be using a lot of common sense in the way I manage it. He also acknowledged modern medicine hasn't quite figured out people like me yet. There are lots of interesting things happening research-wise, but in the meantime, we have to just do the best we can to keep well, while the medical world catches up with us.

It was strangely comforting to hear the things I had been thinking about, leading up to the appointment, put into words by the specialist as well. This isn't quite as good as someone giving me answers about what to do, but it as at least reassurance that I'm not quite as incapable of managing things as I sometimes feel. I still don't want to be in charge of this mess, but if I am, I guess it's good to know that at least one person thinks my instincts are worth trusting. 

Thanks for reading,
Little Miss Autoimmune

Thursday, July 28, 2016

Disability and Ableism

I don’t like conflict. I mean I really don’t like conflict. In the last few years I’ve developed a fun symptom where if I get really angry or upset, my blood pressure drops and I run the risk of passing out. As a result, I’m now a pretty calm person and I avoid potentially emotionally-laden conversations, especially online.

But there have been certain discussions lately that have been harder to ignore. The film Me Before You has prompted a lot of people to make comments about how they would kill themselves if they were to become disabled, in arguments defending the film.

I find it baffling that any reasonable, modern person would consider this an okay thing to say. My initial instinct was to avoid dealing with this, but when a comment of this nature was made on my facebook, I saw just how widespread and accepted these ideas are, and realised that most people don’t even understand that what they are saying is harmful. As difficult as it is for me to talk about this stuff, I can’t expect the world’s perception of disability to change if I am not willing challenge to it.

Saying that you would kill yourself if you became disabled, is not any different to saying you would kill yourself if you were gay. I understand that this may be confronting to hear, but that doesn’t make it any less true. The only difference is that one of these statements is considered socially acceptable to say, despite the hurt it causes, and one of them is rightfully condemned because of its harmful nature.

To be really clear, I am not against the idea of euthanasia (I am not necessarily for it either, but this is not what this post is about.) If you say you would kill yourself if you were to become disabled, you are not talking about euthanasia, or even talking about your own life, but instead about your perception of what a disabled life is. Whether this is your intention or not, you are effectively saying that you do not believe disabled people’s lives are worth living. Effectively saying my life is not worth living, that killing myself would be a reasonable decision.

Online, posts are read by able-bodied and disabled people alike, and in all likelihood at least one of those people is struggling to find reasons to stay alive right now. A major life change, like a new disability, will often involve a process of grief, and suicidal thoughts may be a part of that. That stage of adjustment and grief is not what life with disability is going to be like forever, but it’s hard to know that when you’re in middle of it. If someone was suicidal because of depression, personal crisis or any other reason people would give them support and list reasons to live. However somehow it’s seen as okay for people to publicly state that they would kill themselves if in that position, when it comes to disability. Depression can be feel just as debilitating as a physical disability, yet it would not be okay to say “I would just kill myself I were depressed like you”. If these types of comments were made about any other issue, they would be labelled as bullying, and removed from forums.

To come back to my earlier point, there is absolutely nothing, NOTHING, wrong with being gay. There is, however, something difficult about being gay in a world that contains homophobia.

There is also nothing inherently bad about being disabled. But there is something very difficult about being disabled in a world that is set up for, and rotates around, able-bodied people.

I’m going to say that again, because I get that for some people this will be a perspective shift that is difficult to make. There is nothing bad about being disabled, it is the world which we all create and contribute to which makes it feel that way.

There will be no choice over whether or not you become disabled in your lifetime. Illness or injury may strike, and the results of that are out of your control. It is within your control, however, to influence what type of world you would end up disabled in. People feel like they would kill themselves if they were disabled, because they live in a world where that is an okay thing to say. Where accessibility is an afterthought, where disabled people are seen as un-dateable and un-hireable. Where getting even the most basic of needs met requires fighting red tape in underfunded and broken health, welfare, and social service systems. Where, as a disabled person, the only representation you see of yourself in film is where the characters kill themselves because they don’t feel a life like yours is worth living, and where able-bodied people walk out of the cinema loudly proclaiming how lucky and grateful they are not to be like you.  

This does all add up to feeling like the world supports your right to die, more than they are willing to support your right to live.

This week 19 disabled people lost their lives, and 25 more were injured, at the hands of someone who is reported to have said he was trying to rid the world of handicapped people. I’m sure many people would like to dismiss this as the actions of someone deranged, but I’m not sure I can do that so easily. I can’t help but draw mental comparisons to the climate of ableism we live in, and the violence that stems from the climates of racism and homophobia.

Instead of saying that you would kill yourself if you became disabled, how about doing something that would make the world more liveable for disabled people? How about changing things, so that suicide doesn’t feel like the only option.

I know, it seems like an unreasonable ask. You are just one person, and you can’t possibly change things when the entire world is set up for able-bodied people. But every little change can make a difference. Even if it’s just to one person.

•    If you are setting up an event, is it possible to use an accessible venue? I often hear “but will disabled people even want to come to this?” – if you want to go to it, it’s likely someone with a disability will want to as well. If you can’t find a suitable accessible venue, ask the venue you do use what provisions can be made for people with disabilities attending. This doesn’t need to be an argument, sometimes all it takes is someone asking the question to draw attention to the issue. If you decide not to use a venue because it’s not disability-friendly, tell them that’s the reason – bringing it to their awareness gives the owners the opportunity to do something about it.


•    If you are an architect, game developer, business owner, webmaster, theatre creator – anything where you are creating something – are there ways to make your creation more accessible? If you’re not sure, is consultation with people with disabilities possible? For example, is there really any reason to make the main entrance stairs instead of a ramp, or is that just what you’re used to? If you are not in charge of making these decisions, can you challenge the person who is to think about these things? Lack of accessibility is often an oversight, rather than an intentional snub, and bringing it to the front of people’s minds can make a huge difference. I know I could probably do better on making the websites I run more accessible – this is a small thing, but it’s a change I can make.


•    Try not to get angry or defensive if someone points out that something is not accessible. I was shocked at how nasty people became when it was pointed out that Pokemon Go is not accessible. I know you all love catching Pokemon, and there are some great things about the active nature of the game, but that doesn’t change the fact that it isn’t accessible for everyone. It’s okay to enjoy things that aren’t disability-friendly. It’s not okay, however, to get defensive, chuck a tanty and spew horrifying abuse when the lack of accessibility is pointed out to you. Disabled people do not need to “just go off and die” because you think it might interfere with your fun. Accept it, help look for workarounds if you can, and keep accessibility in mind the next time you are creating something.


•    Challenge people if you hear them say derogatory things about disability. If you wouldn’t put up with racism, sexism or homophobia, don’t put up with this either.

This has been a hard post to write, and I accept that not everyone will agree with what I’m saying. Other people will have different perspectives on these issues, and that’s okay. Again, I am not making judgements about euthanasia itself here. That is a completely different issue. My hope is just that one day, disability won’t be that big of an issue, because the world will have figured out how to make it work. I know that the things I’ve suggested here won’t change the world, but they are a start.

Thanks for reading,
Little Miss Autoimmune

Wednesday, June 1, 2016

She Chose Down

A couple of months ago, whenever anyone asked me how I was, I sent them this video.


I think most people were just confused by this, but at the time I felt it was the best explanation I could give for what I was feeling. Labyrinth is one of my favourite movies, and I've written before about some of the meaning I think can be drawn from re-watching Labyrinth as an adult. As a child I never realised that in this scene, Sarah actually answers the riddle correctly. Yet she still falls through the floor a moment later.

I screwed things up this year. I made a choice - seemingly the right choice - but things went badly. Then I made another choice, although this time it really was the wrong one, and I ended up in a massive dark hole. This is the unfortunate reality with chronic illness. You can do your research, listen to expert advice, weigh up your options… but there are still no guarantees.


A few months ago, after my sleep study provided a whole bunch of inconclusive results, I decided to trial a drug-free treatment option to help with my sleep problems. It seemed like a safe option - it's been shown in clinical trials to be more effective than medication at treating insomnia, and it was recommended by my specialist. Sounds like the right choice, yes? Unfortunately no. Not only did it not help with my parasomnia, it actually increased it, and the resulting lack of sleep caused a significant flare of my autoimmune disorders. So I made another choice, medication this time, and while it did improve the parasomnia symptoms a little, it also had a significantly detrimental effect on my physical and mental wellbeing. I ended up in more pain than I've been in since... well, probably since I very first got ill. I went from doing weekly dance classes to struggling to walk to the bathroom, and I experienced far darker places with anxiety and depression than I care to revisit. Luckily my doctor was on to it, and recognised that the medication had become dangerous for me. I couldn’t stop it immediately, but she gave me instructions on how to taper it off safely. In the middle of all this, my blood work also revealed an unrelated medical condition, which fortunately was treatable but caused some neurological symptoms and added to the depression in the meantime.


So with all that going on, you would have thought I’d have stopped the drug-free treatment as well right? Well… no.


The choices I’d made had gone so horribly wrong, I found myself stuck in a decision paralysis. Everyone – my doctor, my family, my friends, even my own body were telling me I needed to stop the treatment programme, and just do whatever I could to get sleep and recover, but I was so terrified of making yet another bad choice, I kept going with it. I also knew I needed steroids to get the autoimmune stuff under control, but weighing up the positives vs the likely side-effect of insomnia seemed too hard a decision to make. 


My doctor was on sudden and indefinite leave, which meant there wasn’t anyone there to step in and tell me what to do. So I did nothing. I sat back and watched myself get sicker, because it seemed safer than making yet another bad decision. This of course ignored the fact that avoiding making a decision is a decision in and of itself. 


Sticking my head in the sand was not my most grown-up response, and after a few weeks of freaking out and crying lots I had to push my fear aside, make some choices and try get my life back on track. I was lucky this time. Stopping the treatment programme helped immensely, and in a bizarre turn of events, the steroids actually made me sleep for nine hours straight instead of the more common side effect of insomnia. 

I went through cycles of guilt, regret, blame and anger over what happened. Was it stupid of me to continue with treatments that were clearly making me sicker? Yes. Do I wish I'd never made the choices I did? Yes. Is that going to change anything…? No. It was incredibly frustrating and sad to find myself in the position of watching my health decline, but I learnt something from this. I've always been afraid of what would happen if my joint pain was to become really active again, or if my teenage depression and anxiety were to return. And well... I've discovered that the answer is that it's pretty awful. But I’m not the person I was as a teenager, nor am I the person I was 12 years ago when my physical health problems first got bad. 

I found reserves of strength within myself that I didn't know I had. As utterly horrible as things were, I found ways to keep going even when giving up felt like a much preferable option. When I wasn't sure if I could keep going, I reached out for help and my incredible friends and family reached back. They were there, supporting me - in person, with texts and phone calls, or messages from the other side of the world – through even the worst moments. 


I've read that when Jim Henson, creator of Labyrinth was asked why Sarah falls through the floor after getting the riddle correct, he admitted he didn't know. Before falling, Sarah does say "It's a piece of cake" and there’s a pattern of bad things happening in the Labyrinth whenever someone says this, but other than that there’s no logic to it and it's not fair. I don't know why treatments that were supposed to be safe went so badly wrong for me. When you have multiple medical conditions there's more chance for negative interactions, but other than there's not really a reason. To quote Sarah again "It's not fair, but that's just the way it is."

My doctor is now back and I have a sleep specialist appointment coming up, so I will likely have to make some decisions about treatments soon. At the moment I’m still in the stage of wanting to reject everything, hoping to avoid making the wrong choice again, but I'm aware that didn’t exactly work out that well for me last time. Not seeking further treatment could be as detrimental as this whole episode has been, and these are things that I'm going to have to weigh up, all the while knowing that it's entirely possible that I may again make the wrong choice. 


I've come to realise that fear of what's happened in the past is not worth ruminating on, because I’m not the same me, and it will never be the same set of circumstances again. I'm still not be back to where I was before all this happened but I’ve learnt things along the way and I’m hopeful that my health will continue to improve. It's not fair that I have to make these kinds of choices, but I can either fixate on resenting that and the bad of what's happened, or I can hope for the best, and know that I will most likely survive the worst. 


You never know, maybe this time I'll choose up.


Thanks for reading,
Little Miss Autoimmune

Wednesday, March 9, 2016

Dear Polly, thanks, but my life isn’t shitty

People have a lot of misconceptions about disabilities, and I understand why – the word spans a huge spectrum of life experiences. But one of the biggest misconceptions, which I can’t really get past, is the idea that our lives are automatically bad or pitiable.

When you find out that someone has a disability, all you know is that some part of them does not work in the same way it does in able-bodied people. You would probably be right in assuming that some aspects of their life are harder than they are for other people, but beyond that you can’t know anything about their intelligence, happiness, or level of achievement. There are probably disabled people out there who are happier than you. There are probably disabled people out there who have achieved more than you. There are probably disabled people out there who are kinder, meaner, prettier, uglier or better dancers than you, because all a disability tells you is that one part of them doesn’t work in the average way.

But this isn’t the message we get from the world.

Recently I read this article from Polly Gillespie, and it frustrates me immensely. I can see why she was angry at the man in the wheelchair, and I do think he was behaving badly. I don’t think she was doing anything wrong by using the disabled toilet, but I feel her description of disabled people as “you poor infirm, elderly, arthritic, mumps-bearing person” buying incontinence pads is childish and uncalled for, as is calling someone in a wheelchair “shorty”. The part that really bothered me though was the assumption that a disabled person’s life is “shitty” or that it is necessary to feel sorry for them. To be fair, we have all said stupid things in the heat of an argument, but I find it concerning that once she had a clear head, she and (presumably) at least one editor didn’t see a problem with putting this out there in the world.
 

My intention in writing this is not to have a go at Polly, as this does not stem from a problem within her, but from the way disabilities are viewed in general. I use this as an example, but this attitude is everywhere, and often the people making these kinds of statements do them with good intentions. People may believe that they are being compassionate or offering a kindness in feeling sorry for someone, but there is a huge difference between compassion and pity. If you’re confused about what that difference is, BrenĂ© Brown’s beautiful short film about the difference between empathy and sympathy might be a good place to start.

I really appreciate it when people show consideration and compassion towards the fact that some parts of my life are hard.

I hate it when people assume my life is shitty because of these things.

It makes me feel ashamed and embarrassed and question my own worth. It makes me feel as if my life is seen as something broken – that I will only be seen as worthy or whole if I get better or am fixed.

I can’t count how many times strangers have offered to pray for me to be healed, given me unsolicited (and almost always inaccurate) “medical” advice, or spouted diatribes about how a positive attitude will be my saviour. Years ago, I wrote about how a stranger had lectured me about how I shouldn’t accept walking with a stick, because I should be striving for something “better”. In that case, I asked him why he was so sure a life walking without a stick was better than walking with one, and he found he didn’t have an answer for that. In these cases every one of those people was coming from a well-meaning place of good intentions, so sure that their advice would make me “better”, but none of them took the time to find out what my life is like now.

Disabled people are not broken. We don’t need to be “fixed”. This might seem like a contradiction when we are often looking for medications, treatments or cures, but these are about making the hard parts of our lives easier or less painful, not about assuming a life without disability is automatically better.

Recently someone asked me why I was walking with a stick, and when I explained, he said “well I suppose a lot of people feel sorry for you.” I think I surprised even myself when the words “But I don’t need anyone to pity me, my life is awesome” came out of my mouth.

My life is awesome. It will be awesome if my disability goes away. It will be awesome if it stays. Yes, it is incredibly hard and painful sometimes, and compassion or help for that hard stuff would be welcome. But pity does not help either of us, so let’s leave that at the door thanks.



Thanks for reading
Little Miss Autoimmune

Wednesday, February 10, 2016

Spoons for the Lupus God!

I've been feeling pretty unwell this week. The last four days I've taken painkillers. This is rare for me - I usually try to avoid them if I can as my stomach is not exactly a fan - but the last couple of days I even switched to stronger ones as I just couldn't cope with escalating joint pain. I've also been having problems with nausea, dizziness, rashes, joint swelling and of course good old fatigue has been kicking my butt. I'd put most of this down to the heat and sun exposure (middle of summer here in New Zealand) but I was getting worried, as I felt so low on spoons, despite cutting down on what I was doing. Last night I found myself sitting on the floor crying, thinking "am I really going to have to cut back even more? Can't I just have a life instead of counting spoons all the time?" Then I realised my face was sore, checked the mirror, and low and behold... Butterfly Rash

I have a bit of a love-hate relationship with the butterfly rash. Obviously it's appearance is not really a good thing, because it means full blown lupus flare, but at the same time, it's reassuring in that once I see it, I know exactly why I feel crap and also, most importantly, that it will pass.  

I was talking to my friend Kendra from ACuteAngle about spoons, flares and the fact that the symbol for lupus is a purple butterfly, and she made me this fantastic cartoon:

Cartoon of purple butterfly eating spoons
Lupus God Sacrifice


This sums up so amazingly well what a flare feels like. When you're flaring, all the spoons get sacrificed to appease the lupus god, and there's not a whole lot left for anything else. Lupus is eating up ALL my spoons at the moment. But he's got to get full eventually, right? RIGHT?

Fork Lupus
If you'd like to check out more of Kendra's awesome cartoons, you can find them on the ACuteAngle Website or follow her on Facebook

Thanks for reading,
Little Miss Autoimmune


Tuesday, January 26, 2016

"Short" is not a Deficiency

A few weeks back, someone told me off for calling myself short. She said I should never say that, because it implies a deficiency. I was quite taken aback by this - one because it’s really awkward to be told off by a complete stranger and two, because I didn’t even kind of agree with what she was saying. To my mind, the only way calling yourself short can imply a deficiency is if you actually believe being short is a deficiency, and… well… honestly? If you think that, it is entirely your issue not mine. To give you some context to this situation, I’d called myself short while accepting an award (because I couldn’t reach the microphone) so I really had no reason to be feeling deficient in that moment. I’ve never seen my height as a negative, and I think trying to avoid using the word “short” would make me start to have issues about this, rather than resolve any imaginary ones she felt I must have.

This conversation did make me think about some of the other language things that come up. Sometimes people will try to tell me not to say I have a disability, and give some waffly explanation about how we’re all unique and that it doesn’t make a difference. After the “short” conversation, I had a bit of a light bulb moment as to why these kinds of pronouncements leave me feeling worse about myself, not better as I’m sure the person making them intends. Firstly, this is actually incredibility patronising. Having a disability makes quite a bit of difference to your life - it changes the way you do... pretty much everything - but not necessarily all in a negative way. While I do have some self-esteem issues about my health problems (which I'm working on!) I’m not putting myself down when I say I have a disability; it’s just a description of the situation. Secondly, people telling me not to say this implies that they do believe that “disability” is the equivalent of “deficient” and something that should skirted around or kept hidden. The message I come away with in this situation is “Disability does make you deficient, but let’s not talk about it because I, the benevolent able-bodied person, am kind enough to treat you as an equal anyway”. That's probably not what's intended, but it's how it feels.
 

Not using the word “disability” doesn’t make the disability go away. I should be able to acknowledge that this is a part of my life without the incorrect assumption that this is a derogatory thing to say about myself. I admit, some of the language I use towards myself probably does seem harsh. I’ll say things like “I’m a bit bung” and I have been known to describe myself as an “evolutionary f**K up” when the question of how many diseases I have comes up. After I posted about the problems I run into sometimes with talking to “healthy” people, a few of my friends told me that me saying “I should have been weeded out by evolution by now” made them uncomfortable. I kind of get where people are coming from with these ones, but again, I’m not actually saying these things to put myself down. I’m saying them because… well they’re funny, they’re true, and acknowledging that generally makes me feel less deficient, not more.

I guess a lot of this stuff comes down to personal experiences and preferences, and perhaps the relationships between people in these situations makes a difference too. I do appreciate it when friends call me on it if they think I’m putting myself down, especially as I do that a lot when I’m in a bad space and it ultimately feeds into negative feelings about myself. The key thing here though is that they are my friends, and know me well enough to be able to make that call. Deciding that you know what’s best for a complete stranger, especially when it comes to neutral terms like “short” and “disability” (which are only negative if you chose to view them that way) is interfering at best, and straight out offensive at worst. You can think these things if you like, you can even say them if really you want to, but perhaps turn them into discussions not lectures. After all, the person you’re talking to is the expert on what it’s like to live their life. Not you.

Thanks for reading,
Little Miss Autoimmune