Childhood Asthma Returns

Unfortunately, it’s time to add another Little Miss character into the mix. For those of you who have no idea what I’m talking about, back when I first started this blog I made Little Miss/Mr characters for each of my autoimmune disorders. 

Mainly this was just an excuse to play with paint. Behind it though, was the idea that if I was able to find humour in something as bleak as a list of diseases, I could find humour in just about anything, and if I’m laughing, I cope better. Simple as that.

Today, I went back on asthma medication.

I had asthma very badly when I was a child, but I’ve been symptom free for over ten years. So much so, that when I was searching for an inhaler over the weekend, I couldn’t find one that hadn’t expired in 2002! A trip to the doctor today confirmed it is indeed my asthma returning. I left with non-expired reliever and preventer inhalers, and, after a discussion about the difficulties of using inhalers with bung hands, a spacer.

Now, seeing as asthma is an autoimmune disease, I bring you Little Miss Asthma:

Last year, when I got the diagnosis of SLE, I wasn’t feeling particularly in the mood for humour. In fact, I wasn’t really in the mood for much other than lying on the couch feeling sorry for myself. Subsequently, a Little Mr Lupus character did not get created.

Here he is now though. He has a hat. He’s jaunty.

Thanks for reading

Little Miss Autoimmune.

Coeliacs and other stuff

The other night I was ordering pizza, and when I requested a gluten-free base, the guy asked me if I realised the side I had ordered contained gluten. I didn't - I'd wrongly assumed it was gluten free, so I thanked him for letting me know and changed my order.

He replied: "Yeah, I make a point of telling people, because otherwise you might get a sore stomach but just think it was your women's problems."

Honestly wasn't quite sure how to answer that.

It's really awesome that this guy is looking out for people with allergies, but for the record, Coeliac Disease and menstruation - not that easy to confuse.

There are a lot of misunderstandings out there about Coeliac Disease and about gluten intolerance in general. This is the first time I've had anyone confuse it with "women's problems" but there is confusion none the less.

This is my understanding of the differences.

Firstly the names - "Coeliac Disease" "Coeliacs" and "Celiacs" are all referring to the same disease. I think Celiacs is an Americanised spelling, but don't quote me on that. I mostly use "Coeliac Disease", just because that's what's printed on my Medic-Alert bracelet, but they are generally used interchangeably. 

Coeliac Disease is an autoimmune disorder. In an affected person, their immune system has identified gluten - a protein found in wheat etc. - as a disease, and therefore responds to the presence of gluten by attacking it and in the process the person's gut is also damaged.

As far as I know, a gluten intolerance is not autoimmune in nature. My understanding is that, similar to intolerances to other foods, the problems occur when the body is unable to digest the gluten resulting in stomach upsets and, in some cases, other symptoms.

For both, the treatment is the same - avoid gluten.

I think sometimes those of us with Coeliac Disease or gluten intolerances get a bit of flack for being difficult or "picky". Much of this, I think, has been down to a trend in recent years of people going gluten-free because they think it's healthier. In a lot of cases (but not all!) gluten-free substitutes are higher in fat, calories and sugar, so if you don't have an intolerance or allergy, I'm not quite sure it fits the bill of "healthier". However, that's just my opinion and not in any way intended to be taken as medical advice. If you're thinking of going gluten-free, whatever the reason, that's for you and your doctor/dietician to decide.

Eating a gluten-free diet is not a choice for me, nor is it a case of wanting to make eating out more complicated. In the past, when I've accidentally eaten gluten, I've been so ill I've lost five or six kilos in a matter of days. I found out I had Coeliac Disease ten years ago, back when all gluten-free substitutes tasted like sawdust. Believe me, if it was a choice, I wouldn't have done it!

Thanks for reading

Little Miss Autoimmune

No-Handshake Awkwardness

Like many people with forms of autoimmune arthritis, I find it difficult to shake hands. The joints in my hands are often swollen and painful, so if someone goes for a firm job-interview type grip it’s likely to be excruciating for me. I have Raynaud's phenomenon, which mean I wear gloves or mittens all the time and somehow that just seems too much like shaking hands with a sock-puppet. Added to that, I walk with a crutch on my right-side, so if I’m standing I’m going to have to juggle crutch, bags and balance issues to be able to greet you.

I don’t expect anyone to be psychic. Even if you know someone has autoimmune arthritis, that doesn’t necessarily give you an idea of whether they will or won’t shake your hand, as it affects people in different ways. This can sometimes lead to some awkwardness, when a handshake is refused. Of course no-one wants to be left hanging, so I’ve compiled a handy list of appropriate and inappropriate ways to deal with the situation.

Appropriate Responses

• Carry on as if nothing has happened

This is really the best way to go. It’s not really a big deal, and the quicker you move on the quicker the awkwardness goes away.

• Acknowledge the awkwardness

If you don’t feel you can just move on, acknowledging the fact that the situation is a bit awkward, and then moving on, is a good way to go. 

• Laugh

Not at the person! Never at the person. But if you can all laugh when you feel uncomfortable, it breaks the tension and all is well in the world again.

Inappropriate Responses

• Insist on shaking hands

If someone is refusing to take your hand, whatever the reason, don’t push them. Often if the issue is pushed, I feel I have to relent and shake hands. This may seem like it makes the awkwardness go away, but it will likely cause me pain which will result in me avoiding you in future.

• Punch the person

Sometimes you might want to try and find an alternative to shaking hands. There are some alternatives that are suitable – waving, a gentle pat on the back, a hug (depending on how well you know each other!)

Some things will depend on the person and how their joints are affected. A high five or fist pump may be okay (as long as it’s gentle) or for some people this may be even worse than a handshake. If you’re not sure, ask. 

Then there are other alternatives that are never a good idea – punching people hard on the shoulder for example (yes, someone really did this and yes they did then have to catch me when I nearly fell over.) FYI, people generally don’t like to be punched under any circumstances, but if you’ve just met them and they’ve just told you they have a chronic pain condition, this is a very bad idea and you’re likely never to see them again!

• Bring it up repeatedly/apologise repeatedly

You don’t really need to apologise in this situation. As I said, I don’t expect people to be psychic, so I’m not going to get upset that you didn’t guess that I don’t want to shake hands. However, repeatedly drawing attention to it, either by apologising or just making comments/jokes about it can get frustrating. There’s only so many times you can say “it’s fine” or fake-laugh before you start to feel silly and embarrassed. The quicker you move on, the better.

• Imply the person is germ-phobic and/or racist

This is a sure fire way to make a situation more uncomfortable! Generally if you make this kind of comment, you will get a stunned silence in reply as the person tries to figure out whether you’re serious or just have a dark sense of humour. I think the time this happened to me, it was a case of weird sense of humour, but I felt horrible about the possibility that they really were offended. In general, try not to take offence about the fact that someone won’t shake your hand. It’s not about you – a greeting is just not worth that much pain.

- Little Miss Autoimmune

Open letter to parents of sick kids (from a now grown-up sick kid)

Dear parents,

First and foremost, you are doing a great job. You may think no-one sees how hard you try to make things better, but your kids do and they love you for it more than you can know, even if they don’t say it.

The following are not criticisms by any means. They’re just some things that I remember from being a sick kid, that I wish I could go back in time to say to my parents. I’m not a child-psychologist or anything impressive like that, so if you don’t agree with what I say, that’s okay. It’s just my opinion really, and you don’t have to agree with it at all. 

1)      Your child doesn’t want you to feel guilty

Many parents of sick kids feel guilty. Some site genetics as the reason, or choices they made for their children when they were babies. Whatever the reason, your child won’t want you to feel guilty about it. In fact, if they knew how bad you felt, they would probably feel guilty that you feel guilty.

You cannot change genetics. We all have them, and if you trace them far back enough, we all have hidden illnesses in our family trees. This is out of your control, and therefore not something you need to feel bad about.

The choices you made for your child were done with the best intention. Whether you vaccinated or didn’t. Whether you picked them up when they cried, or let them settle themselves back down to sleep. Whether you breastfed them or not. There is no definite evidence as to what causes autoimmune arthritis diseases, and at times either choice will have been thought to be a possible reason. The time spent wondering if this or that caused it, is entirely speculation, and to quote Baz Luhrmann “about as effective as trying to solve an algebra equation by chewing bubble gum.”

Your child has probably not thought about any of these things. If they ask you why they are in pain, or why this happened to them, they are most likely not really looking for an answer. It’s quite likely that they are just communicating to you that it hurts, and that they don’t like the fact that they are sick. They know that you already know, but they still need to be able to tell you.

When they’re older, and question whether genetics or environmental factors the cause of their illness, they won’t do it with blame. They will see the good intention behind the choices you made, and love you for that – not ask you to feel guilty.     

2)      Worry and anger sound similar to kids

It’s absolutely natural to be worried, when you have a sick kid. It’s also perfectly normal to be angry some of the time. Sometimes these sound the same to kids, though. They won’t always be able to tell the difference between “your voice is rising, and you’re frowning because you are so worried on my behalf” and “your voice is rising, and you’re frowning because you are angry at me.”

If you notice that your child reacts as if you have told them off when you are worried, it may be that they are interpreting your worry as anger. Don’t feel bad about this. Every parent, whether they have a sick kid or not, will have this misunderstanding at some point.

If your child is old enough to understand, have a conversation about the fact that worry and anger can sound similar. Explain that you’re not angry at them. Your child may be able to tell you what they’d like you to do or say instead, or you can talk about ways for them to understand the difference between worry and anger. There may be something you can say or do to make it clear for them.

When you’re stressed out it’s hard to think about, let alone change, what your face and voice are doing, but having a conversation about it can help stop it being misinterpreted.

3)      Your child will probably still rebel

Unfortunately, having a sick kid doesn’t give you a free pass on rebellion. Your child will still have all those pesky hormones, and that need to assert their individuality, just like every other teenager.

They may do this in the average way – alcohol, boyfriends/girlfriends you don’t approve of, sneaking out. Or they may start to rebel in a way that is closer to their world of being ill. It may be that they want to be in charge of their meds, and the choices about those. They may reject any suggestion you make, just because you made it.

There’s no simple fix for this, just as there’s no simple fix for the average child or teenager rebelling.

Let them be responsible for their meds if it’s possible to do that. They will need to learn to handle this themselves, and make choices about them, at some point anyway. Keep an eye on it, but try not to intervene unless you notice something of big concern.

If they reject your suggestions of what will help, make the suggestion but don’t try to convince them of it. Even if they say no initially, if you’re not persisting they have nothing to fight you on. They can make the decision themselves, and come back to it. If you argue about it, it will be harder for them to change their mind (or admit that they’ve changed their mind) but if they are able to say no once, then come back to it later on, there is no shame in it for them.       

Mostly what it boils down to, is love them, and keep them safe. Parents of sick kids have the hardest job in the world, and when the kids are grown up, they will look back and understand and appreciate it all.

Yours Sincerely

A (now grown-up) sick kid 

Little Miss Autoimmune  

I wrote this as a resource for World Autoimmune Arthritis Day

IAAM has established World Autoimmune Arthritis Day (WAAD), to be held annually on May 20^th, online and during all time zones, making it a 47-hour online event.  This Virtual Convention will unite patients, supporters and nonprofits from around the globe, inviting them to participate in both live and on-demand presentations, scheduled live chat sessions, surveys, live Call to Action posts and access to an online library of downloadable resources that can help them and their supporters in managing their diseases. Thus far, WAAD is registered on 16 health calendars internationally and has already received nonprofit support from over a dozen organizations, including the American College of Rheumatology, the Spondylitis Association of America, Arthritis New Zealand, the International Still’s Disease Foundation and Lupus UK.  As the official Host of this historic event, IAAM invites YOU to be a part of it too. Best of all?  It’s FREE to register!

*IAAM is the official Host and Event Coordinator of World Autoimmune Arthritis Day.  www.IAAMovement.org

Find the WAADwebsite here

Register for WAAD here

Croc-rage

70% of the internet is just a giant ball of rage...

While I was struggling my way through the rain on my daily walk yesterday, I noticed one of my feet was getting particularly wet. When I got home, I checked, and yes indeed, the bottom of my shoe had worn through. I was a little upset, as these are undeniably very cute shoes, but then I remembered I had bought two pairs and retrieved the other from the wardrobe.

My eczema and psoriasis get worse with a number of things – sunlight, certain foods, and the most annoying one: the glue in shoes. That means my options for footwear are slippers or crocs/crocs knock-offs. Given that I have arthritis in the joints in my feet, slippers do not give enough support, so crocs are my only option.

There is an irrational amount of rage directed towards crocs. There are comedy routines, facebook posts, entire blogs dedicated to croc-rage.

I don’t understand it. No-one is making you were crocs, so your comments about how ugly they are etc. etc. are bullying to people who do. Plain and simple.

Seriously people, get over yourselves!

Usually if I’m in the room, when someone starts an anti-croc tirade, they will eventually realise and say “oh, but it’s okay Helen, you have an excuse to wear them.”

The last time I wore high-heels, I had pain so bad in my feet and lower back, it made me want to vomit. Before I discovered I was allergic to the glue in shoes, I had to sleep with my feet covered in steroid cream and wrapped in gladwrap because the rash was so bad and subsequent infections were causing a serious risk to my health. So no, wearing crocs is not a choice for me, but what if it was? 

Why exactly do I need an excuse to wear whatever footwear I want? Sometimes I think your shoes are ugly, but I don’t say it because that’s mean and I’m a nice person. When people make these kinds of comments, I usually laugh along and pretend I find it funny. I don’t. It’s mean. And honestly, it makes me like you a little less. Okay, I’m kidding about that last part, but it certainly doesn’t make me like you more!

You don’t know why someone is wearing crocs. Maybe they have chronic pain too, but are not “out.” Maybe they have a skin allergy which you don’t know about. Or maybe they just want to be comfortable, and you actually don’t have the right to make them feel bad about that. I really like my crocs. My growth was stunted when I was younger, and so I have to shop in the children shoe department. I love that I can wear pink shoes with butterflies on them, and if you think that makes me childish or immature, you live in the land of no imagination.   

I think the thing that frustrates me most about croc-rage is how do you have enough energy for it? I barely have enough energy to put my own shoes on in the morning, let alone care about what someone else is wearing.

If you don’t like my shoes, just look at my face. I know sometimes tall people are confused by the fact that my face and feet are closer together than yours, but seriously, it’s not that hard.

- Little Miss Autoimmune

Answers

I’ve been fairly slack about blogging lately. Usually when I’m not updating regularly, it’s because I feel I have nothing interesting or useful to say. Lately it’s been the opposite. There are too many things to say, but formulating them into coherent, bite-sized posts has been too difficult, and so despite starting many drafts, not much has actually made it into public view.

I’ve had a fair few medical appointments lately. Some of them have gone well, some not so much, but I think maybe the easiest way to update is just in a summary of the things I’ve found out.

 1) My Vitamin D levels were super low.

From what I’ve read, the prognosis of SLE with low Vitamin D levels is not good, and so it’s important to check levels or failing that just start on a supplement. Reading this had worried me somewhat, as I was also aware that pretty much the entire population of New Zealand has low Vitamin D. So much so, that GPs are not even allowed to request the blood test anymore. My GP told me that she has actually taken to just starting people on a Vitamin D supplement without the blood test, as it’s unlikely that they’re NOT low. Specialists are allowed to order the blood test however, and so my rheumatologist had tested mine.

As SLE is photosensitive (reacts to sunlight – rashes and/or generalised flares) I avoid direct sunlight, and slip-slop-slap and wrap anytime I’m outside. Therefore I was expecting my results to be low. I just wasn’t quite expecting them to be quite so low.

Google tells me that Vitamin D levels can be explained like this*:

90-100 is the optimum range. You want your level to be here, for best health

50-90 is within the “normal” range, but in terms of vitamin D, you want to be optimum not just normal

32-50 is considered deficient

Levels should never be under 32

Levels under 20 are considered critically low

My level was 21, so you can see from the above that that wasn’t good. I had ten days of daily supplements, and now am on monthly, so I'm hoping my levels have improved.

2) My blood pressure is low

I’ve been having dizzy spells, and I wasn’t sure why. As a teenager, my blood pressure was always slightly low and then fairly often it would drop suddenly and I would get to know the floor a little better. I still don’t really have an explanation for why that used to happen. Eventually “my blood pressure just drops suddenly for no reason” became the reason. It stopped happening around the time I first started on DMARDs, so I have suspicions it was related to the autoimmune stuff all along, but I guess I’ll never know for sure.

I haven’t quite got to the regular fainting stage yet, but I have had a couple of crashing-into-walls, or grabbing-the-nearest-person’s-arm moments though. It may sound weird, but I was quite relieved to see the dizziness reflected in my blood pressure. Even though it doesn’t really change anything, being able to say “I’m dizzy because my blood pressure is low” rather than “I’m dizzy for no particular reason” feels slightly better.

3) The random swelling in my tongue andthroat is not an allergic reaction

When I described what had been happening, my nurse explained that it’s not an allergic reaction, but most likely from lack of saliva. My mouth is very dry, and this is probably causing the spitting blood in the sink issues too. My nurse has sjogrens syndrome herself, and said that the same thing has happened to her. Basically the tissue in your mouth and throat gets irritated from being so dry and then swells, leaving you feeling like you’re choking. It explains why antihistamines didn’t help, and that the swelling eased when I drank water and cooled down. I’ve been using dry mouth rinses and gums more often, and been careful to always have a bottle of water at hand. I’m still getting occasional swelling and bleeding in my mouth, but it does seem to be keeping it at bay.  

There’s heaps more to update on, but this is more than enough for one post. Hopefully I’ll get my act together soon and start doing that stringing-words-together-coherently thing soon :P

Thanks for reading

Little Miss Autoimmune

*Please don’t take this as medical advice. I have no idea whether this is accurate or not. As I said, it’s just what google told me.

(Back to) Invisible Illness

I’ve talked before about the “but you don’t look sick” aspect of invisible illnesses, but I’m not sure I totally got it myself. When I feel awful, I tend to assume I look awful, even if that’s not what other people are telling me.

The other day my friend took this photo for me to use as my author pic, on my publishers website. When I saw it, I suddenly got what people meant. I don’t look sick. If I saw this person on the street, serious illness would not be the first thing that came to mind.

What you can’t see in this photo is that we had to delay taking it, because a week earlier my right eye had swollen completely shut. You can’t see that only a couple of days before, my face was covered in sores, some of which had turned into ulcers and my nose wouldn’t stop bleeding. You can’t see that this was one of the first times in months I’d been able to wear my hair out, because it had been falling out. You can’t see the crutch on the ground beside me or the gloves and coat I normally wear all the time to keep raynaud’s at bay. You can’t see that the bracelets around my wrist are actually not one, but two, medical alert bracelets, and you can’t see that I’m wearing fluffy bedsocks over my tights because my toes kept turning blue that morning.

I weighed up whether to post this. I like the way I look in this photo. I did not like my swollen-eyed scabby face look, so much so that the only person I let see me like that was my Dad. Of course I don’t want to look sick, but I do want people to understand that even though I don’t always look sick, I am.

World Autoimmune Arthritis Day’s video Invisible makes this point much better than I ever could. Check out the video here, or find World Autoimmune Arthritis Day on facebook here.

Thanks

Little Miss Autoimmune

Some Good News

Today, I had my appointment with the Neurologist. I’ve been secretly (and not-so-secretly depending on how closely you know me) freaking out about this appointment.

A couple of days ago, one of my friends asked why I was so nervous, and I had to stop and think. In the end, I came up with three reasons.

1) I was worried the neurologist would be horrible to me. This may sound like an irrational fear, but the neurology department at Wellington Hospital do kind of have a rep for being rude and unhelpful. I had to see them when I was a teenager, and while they weren’t horrible I was pretty glad I didn’t have to see them regularly.

2) I was worried I’d have to go through a barrage of MRIs and other unpleasant tests, only for them to say: “Well, we’ve ruled everything out. Surprise, surprise, it was lupus all along.”

3) And this was the hardest one to say aloud: I was worried they might not rule everything else out. I was worried that I may actually have something like MS, on top of everything else.

Well, it turned out none of those things happened!

The Neurologist was really lovely. He was thorough and helpful, and even cracked a joke or two during the appointment. He didn’t get impatient with me when I was slow to... well everything I do is a bit slow really, and didn’t act like I was just being difficult when I was too short to climb up onto the bed easily (you’d be surprised how many doctors seem to expect me to spontaneously grow to make it simpler!) He helped me out when my leg started spazzing out and I lost my balance, and was very reassuring and encouraging about all the symptoms I’m having rather than suggesting they’re “all in my head.”

I did have to do some balance, and other neurological tests, but no bloods, CTs or MRIs (thank God – I’m super claustrophobic!)

The end result was that there’s no evidence of a progressive neurological disease, and while my nerve function is affected, there’s no sign that there’s any damage. The most likely cause for all the tremors, pins and needles etc. is that inflammation from all the autoimmune stuff is pressing on the nerves causing them to get a bit confused. There is the potential that one of my meds (for PCOS, not for lupus) could be adding to problems, so I need to check in with my GP about that, but that in itself is nothing major.

So, the best course of action is simply to continue to try and get all autoimmune issues back under control. No, it’s not a magic pill, but it does mean that I’m already on the right track and there’s hope that everything will settle down eventually.

While none of the things I was worried about actually happened, I don’t think that worry was wasted. While I agonised over all the negative possibilities, I was mentally preparing myself for them. I certainly wouldn’t have been happy, had any of them occurred, but I would have coped because they wouldn’t have been coming at me out of the blue.

As it was, none of them happened and it all went really well. So the niceness of that, more than made up for all the worry.

- Little Miss Autoimmune

My Amazing Friends

The other day, a couple of ladies came to my door to talk to me about the bible. I’m not really religious, but nor am I not religious, if that makes sense. I talked to them for a little while, all the while feeling excruciatingly embarrassed that I was answering my door in my nightclothes.

At some point during the conversation, I mentioned that I had lupus (probably to explain why I was walking with a crutch, and still in a nightie at midday.) They began talking about suffering, and I said that I didn’t believe you’re given more than you can handle. This was apparently a point of contention, as they immediately began to assure me that God didn’t hand out suffering, the Devil did. The Devil had given me lupus.

I really didn’t know what to say at this point. Part of me wanted to laugh at the image of a red, cloven hoofed Devil going around handing out lupus.

I understand what they were trying to say, but I really didn’t agree with it. I don’t like the idea, that sickness or any kind of suffering is a punishment, or that it is in any way evil. Sure, it can feel evil, but as far as I’m concerned it’s just something that is. Putting a judgement like that on it – thinking of it as a punishment, or as evil, just makes the experience even worse. Sickness etc. is bad enough by itself without adding to it.

I have some amazing people in my life. Many of them have illnesses of some sort – this is not why they’re in my life. Some of them are family members, or people I went to school with. Others I’ve worked with, either in the past or currently. Some I’ve met through support groups, online or in real life. All of them are amazing.

When I said to the ladies at my door, that I don’t believe you’re given more than you can handle, it’s because I look at the people in my life and the ones who have been through the most crap are with out a doubt the strongest of the people I know. I don’t know if they’re strong because they’ve had to be, or if they were always strong and it’s just more visible because they handle the things life throws at them with grace and humour. I suspect that they were always strong. And always amazing.

This is my friend Tessa’s blog. She’s been going through a tough time, with some serious illness this year. She is, without a doubt, one of my strong and amazing friends, but even my strong and amazing friends get down sometimes. So, if you’d like, maybe check out her blog and send some love and positive vibes her way. I’m sure she’d appreciate it.

- Little Miss Autoimmune.

Just another day.

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

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

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

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

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

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

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

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

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

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

- Little Miss Autoimmune