The pitfalls of hope

I wrote this in the middle of the night a few days ago. I wasn't going to post it, because usually things I write in the middle of the night are either incoherent or excessively maudlin, but I read over this tonight and it doesn't seem too bad! Feeling way more positive now either way. 

I am sad.

That seems like a stupid thing to start a post with. My goal has always been to make this a positive place. When I started this blog, I knew I was taking something that was my own personal journey and making it public. I don't think I could have put into words at the time why I wanted to do this. I think I had an idea that perhaps it would help other people, but also the idea that it would help me too. I've always been one of those people who narrates their own life inside their head - I say that like I know for sure that other people do this. I don't really. I guess I just assume that if shows like Scrubs and Grey's Anatomy are anything to go by, there are other people out there with a voice over inside their head trying to make poignant conclusions out of the random things that happen to them. Or at the very least conclusions, without the poignance.

Right now, it's the middle of the night. I got out my computer with the hope of putting my insomnia into productiveness by working on my latest novel project but instead I ended up writing this. Because I am sad and I am frustrated and in the middle of the night there aren't that many people you can say that to.

I read something on someone else's blog recently about how the author felt she may have exaggerated her illness, not to her doctors but to herself. I do this. I think we all do this. In the middle of the night, when the pain is bad, or if my body has become rebellious in some other way, I panic. I feel that this is the end. I have lost the use of that limb, and normal function will never return.

Tonight trying to open a jar of peanut butter, left me screaming in pain. I paced back and forth in the kitchen, clutching my hand and shaking, trying to fight back the nausea and tears the pain had induced. And then I cursed myself for being so melodramatic and laughed a little too, at how ridiculous it would all look if anyone were there to see it. Eventually I managed to open the jar with a pair of scissors, which made me feel a disproportionate amount pride at my own ingenuity.

This isn't why I'm sad. The pain in my wrist eventually eased, and I could laugh at my own panicked belief that it wouldn't. I thought of the icepacks in the freezer, the splint in my bedside drawer, and all the other back up plans that I have in place but that seem so far away in the moments I need them the most.

And I started to feel a little more positive. And I started to let my dark sense of humour construct the event into a funny story I could tell someone later if I chose.

Mostly I am fine with the way things are. I was going to say I hate the fact that I'm sick, but I don't know if that's accurate. Hating something takes energy and I'm not sure I even give it that. I manage being sick. Sometimes I panic. Sometimes I cry. Lots of times I laugh about it. And all in all it's okay.

And then something happens that give me hope, and that kind of messes things around for a while. Don't get me wrong, I have hope all the time. I have hope that I will achieve things despite my illness. I have hope that each day will be a happy one. I have hope that my life will be a good one, whatever it is that that means. But I don't have hope that my illnesses will get better.

To me, having hope that my illnesses will improve or go away means that I put my life on hold. Even if it's not what I intend to do, it's what happens. Why force myself to get out of bed and do something now, while I feel so ill, when I could wait until I am well and do it then? I have to have the belief that this won't get better, because I have to believe this is my life and live it like I'm not going to get another chance.

The reason that I am sad and frustrated is that recently I let the wrong kind of hope sneak in. Even though I tried not to, I let myself believe that in seeing the specialist and having some tests done, there might be an end to my stomach problems even if everything else stayed the same. This wasn't just a naive optimism on my part; at least I don't think it was. I knew very well the tests may not show anything - in fact, I had a strong suspicion they wouldn't. What gave me hope was the assurance from the specialist that even if the initial test showed nothing, there were steps we could take to improve things. Even if the end diagnosis was not one of "disease", but just of "dysfunction without known cause" there would still be a course of action to take.

It sounded so reassuring. I felt relief that I would have a direction at last. Even if it wasn't a cure, and the likelyhood was that it wouldn't be, I would at least know what I was supposed to be doing instead of just fumbling around hoping that I at least wasn't making things worse.

So the tests didn't show anything. I was prepared for that. But I wasn't prepared for the fact that I found this out in a letter, which I didn't totally understand, and did not include the promised plan of action. I wasn't prepared for the letter to talk about "part of the bigger picture" leaving me wondering if this was a reference to my medical issues which I didn't understand, or an pseudo-philosophical comment. I wasn't prepared for the fact that I actually don't know what happens now. And I wasn't prepared for the fact that all this not understanding makes me feel stupid and scared to ask.

This is where I'm at right now. Sad and frustrated. I should say, none of this is really a comment on the specialist in question. I do wish he had phoned me with the test results, as he said he would, rather than sending a letter. I don't think I would be this confused if I had had the opportunity to get clarification, but I would probably still be sad because I had let myself hope for that "better" and that was probably never going to happen.

I do know these feelings will get better. I know I will let go of that hope I was feeling, and I'll go back to feeling okay about how things are and not trying to force them into the picture of something I wish they were. I will laugh about this, and tell stories about this. I will go back to being okay about making my own decisions about how to try and treat my diseases, and stop hoping that someone else will tell me how to handle it.

Perhaps I will post this rant on my blog, or perhaps I won't because I will decide that it's all a bit overdramatic. Either way, writing it has helped me come to an internal-narrator conclusion worthy of Scrubs or Grey's. Maybe reading it would help someone else know that it's okay to not be positive 100% of the time. And that would be another conclusion in itself. For now I will sleep, and all going to plan I will wake tomorrow with the kind of hope that is good for me. The hope that tomorrow will be a happy day, and that I will have a good life. Illness or not.

Thanks for reading,

Little Miss Autoimmune.  

Arthritis New Zealand Christmas Appeal

A few months ago, I was interviewed by Arthritis New Zealand, as part of their Christmas appeal. Last week, they contacted me to say the appeal had raised nearly $40,000 in donations! They also included a copy of the story about me, that went out with the appeal. It's always a little weird to read about yourself, when it's been written by someone else, especially when it comes with photos, but I've posted a scan of the appeal letter below.  

 
Thank you to everyone who donated, and a big thank you as well to those of you who sent messages of support. Arthritis New Zealand sent me some of the ones addressed to me, which I've included below.

 

 


Thanks for reading

Little Miss Autoimmune

Choices (Part Two) - Life Isn't Fair

“Rather than embrace the immutable and humanizing fact that we are all dying at all times, we point the finger of scorn at those who die more quickly wondering how they have brought it upon themselves.” 

God is No Laughing Matter – Julia Cameron

I found this quote in the back of one of my notebooks the other day. I remember a few months ago reading it, and copying it down because it struck me as interesting, but even as I did I didn’t 100% agree with it. Yes, I have come across people who judge me for being ill. I have come across people who will make assumptions about why I am in the position I’m in now, or others who believe I could be fixed if I just... and the fact that I don’t want to, must mean I don’t want to be well.

For the majority of people, I don’t think the word “scorn” fits though. I think most comments of this nature come from a very genuine, if misguided, desire to help. Others, I think, come from the naïve human believe, which we all hold to some degree, that life should be “fair.” If someone gets sick because they smoke, do drugs, eat an unhealthy diet etc. then we can comment that it’s sad, but we can feel secure in the belief that it won’t happen to us because we take care of ourselves. We can feel confident that they did indeed bring it on themselves, and we aren’t going to make that same mistake.

One of the most common questions I get asked is whether I have tried a gluten-free diet. When I say I’ve been gluten-free because of coeliacs for over ten years, the response is often one of sadness. I think people sometimes hold on to the idea that you can cure everything with something like a gluten-free diet like a talisman, fighting off the illnesses they either have now or want to avoid in future. But unfortunately this isn’t always the case.

The reality is sometimes people who take the best care of themselves get very, very sick. Sometimes people who have terrible lifestyle habits enjoy a disgustingly unfair level of good health. Some people have immediate success with either conventional, or alternative treatments, and others of us have to struggle to find anything that will make even the slightest bit of difference. Because life isn’t fair, and that’s just the way it is.

I felt this tied into my first post about the choices people with chronic illness face, because as I wrote I was trying to pin down why it is that everyone seems to have an opinion on which options you should take when it comes to treatment. I was also trying to pin down why it is that I, and many others, get defensive when others make suggestions about what we “should” be doing.

In many cases, I think making suggestions probably comes down to wanting to share the happy. If something is working, won’t everyone want to try it? But the reality is whatever it is that’s working for you or someone you know; it may not work for everyone else. Other people may have already tried it, it may just not be right for them, or it just may not be a priority right now. When I dismiss something another patient suggests, it doesn’t mean I don’t believe it worked for them, just that it either hasn’t worked for me already, or there’s a very good reason I can’t or don’t want to try it.

So why is it that I get defensive?

I don’t mind people making suggestions, but I do mind if people push them or indicate that I’m being unreasonable not to try them. For example, I’m sure cider vinegar does have many healing properties but, given that I’m allergic to apples, I don’t have any interest whatsoever in trying it. I don’t expect people to know I’m allergic to apples, so I don’t object to the suggestion, but I do get irritated if people push it once I’ve told them it’s not an option for me. The allergy isn’t going to go away if you keep regaling me with the benefits of apples. Even if there isn’t a reason, and someone just doesn’t want to try whatever it is you’re pushing, I’m not convinced nagging is the best way to change that. If it’s something that you believe in, then by all means suggest it – but ONCE is enough.

It does also bother me when suggestions are given with an air of authority or with the implication that the suggester is an expert in the subject. Unless you really are an expert in both the thing you are suggesting AND the disease(s) you are proposing to treat you could be doing more harm than good. I can’t tell you how many times someone has suggested something that would actually do more harm than good for me. Not necessarily because the thing itself is harmful in general but because it is harmful for my particular illnesses. I can’t say this enough times: Just because something is natural does not automatically make it safe. I am old enough and wise enough to do my own research, and make informed choices, but I look back at teenage-recently-diagnosed-me, and realise that I wasn’t always. If you’ve heard about something you think could help, but you don’t know all the facts, just admit that. I’m far more likely to trust someone who says: “I don’t know much about it, but would this be helpful for you?” than to someone who insists they know exactly what I need, despite evidence to the contrary. 

The other thing I find hard to deal with is when suggests have an element of blame attached to them. A series of posts circulated on facebook recently depicting images of fruits and vegetables, against images of medications with captions like “when are we going to understand this is the cure (the produce) and this is just a band aid (the medication)?” or others suggesting that medications are the cause of all illness, and we’d all be cured if we just treated everything with honey.

I do strongly belief in the positive effect diet can have on illness, and I think alternative therapies can be very beneficial, but neither are a cure. I have always had a good diet, including my 5+ a day, but I still have health problems. I’m not sick because I didn’t eat enough fruit and vegetables as a child, nor can all my problems be blamed on medication. Suggesting anyone brought their illness on themselves by diet or any other means will most likely come across as condescending and, as the quote suggests, like scorn whether that is your intention or not. 

If you haven’t had first hand experience of chronic illness in your own family, it can be easy to believe that you go to the doctor or alternative medicine practitioner, they tell you what’s wrong, they treat you and you get better. It is hard to fathom that sometimes there isn’t a simple answer. It’s also hard to understand that just because something is natural, that doesn’t automatically mean it’s safe or beneficial.  

I think basically it comes down to, the suggestions aren’t the problem, but sometimes the way suggestions are made can be offensive. My advice to people would be to think about how you would feel when confronted by what someone else think you “should” be doing. Take a moment to listen and to ask some questions before jumping in with what you think the solution is. Posing your suggestion as a question can help too. Rather than “You should...” think about “Would _______ help?” or “Have you ever heard of _________?” 

And most of all, remember that it’s not always as simple as cause and effect with chronic illness. So leave the blame behind, at least until you have all the facts.

Thanks for reading, 

Little Miss Autoimmune

Choices (Part One)

When you have a chronic illness you face a lot of choices. For treatment, do you go with a mainstream medicine, restrictive diet, or an alternative therapies path? Within each of those options, there are a whole host of further choices to make. Which medicine? Which diet? Which alternative therapy? Then there’s the question of how long you give each option to work, before moving on to another. Each option has many pros and cons. If you choose medication, you may be facing some pretty heavy-duty side-effects and long term risks, but a natural or alternative method does not automatically equal safe either. Many natural therapies and diets come with side effects and risks too. Then there’s the fact that whichever option you choose may not work, in which case permanent damage from the diseases is a risk. 

Any path you take, there will be someone who judges you for it, or who will make well-meaning suggestions that you should have taken another. I have irreparable damage to my body that shows I haven’t always made the right choices. Or perhaps another way of looking at it: I have irreparable damage in my body that shows that none of the available options have been successful for me. 

If you have more than one illness, the choices get even harder. Recently I had to choose whether to stay on, or go off a certain medication. Basically, the medication was making my systemic symptoms considerably worse, while at the same time keeping my joints stable. Going off it would hopefully mean the systemic symptoms would calm down, but the trade off was that my joints would more than likely begin to progress again. It was a tough choice, but in the end I chose to go off it, and I’m just hoping that it was the right one. I probably won’t ever be able to say for sure, but for the moment I feel okay about it.

Sometimes, I have to make choices about which symptom I can cope with being worse on any given day, because the things that help one disease will make another worse. Something as simple as clothing choice can mean choosing which type of sick I’m going to be. If I get too hot, my tremors get worse, but if I get even a little bit cold my hands and feet turn blue and I sometimes start to have difficulty breathing. If I have too much exposure to sunlight it means rashes and generalised flares, but long sleeves in summer means overheating and lack of sunlight means vitamin D deficiency.

In terms of diet, I have tried many things, and each came with a list of benefits and trade offs. Going vegetarian helped my joints and inflammation levels, but my anaemia, stomach problems and PCOS got worse, and I developed migraines. Going grain-free helped my stomach problems, but my joints got worse, my inflammation levels shot up, and my bladder problems increased. Basically it comes down to cutting out any one food group, means eating more of another, and that can come with downsides for some people. I often joke that I am just allergic to food in general, as there are very few things I can eat a lot of without getting some ill effect. So while there are many cases of these diets being successful for other people, they are not right for me.

I often hear people preface their success story with “if it works for me, it can work for anybody,” or a statement of similar meaning. This never seems to be based on anything in particular - just a strong belief that theirs is the right path. The fact is, just as not every medication works for every person, not every diet or alternative therapy will work for everyone either. If your path is working for you, that is fantastic. Keep doing what you are doing. But if you want to recommend it someone else, maybe try prefacing it with something like: “this worked for me, maybe it might work for you too?” because this is a much more realistic assessment of the situation.

Overall, my choice is a combination of methods. There are a number of food groups which I limit to avoid flares of particular symptoms, though the only thing I have completely cut out is gluten. I am on some medications, and I haven’t ruled out adding more to the mix, but there are some that I have stopped due to the side-effects well outweighing the benefits. I take some natural supplements with the support, and encouragement of my doctor, and although there are some alternative therapies that I will never try again because of bad experiences, there are others that I’m willing to give a go. I’m a big believer in the power of positive thinking, and if it’s possible to cure yourself with either laughing or cathartic crying, I sure do enough of both to give it a decent shot.

All of these things combined help to keep me feeling okay-ish, but they’re not a cure. For me, it is a balancing act, and quite a precarious one at that. Perhaps I would have success if I chose one path or the other, and committed to it fully, or perhaps the whole balancing act would tumble down and I’d be left sicker. Either way, I’ve resolved to be okay with whatever choices I make whatever the outcomes turn out to be. I’ve also resolved to be okay with the fact that whatever I choose to do, there will be someone who thinks it’s the wrong thing, or who thinks their method is better.

Until I find someone who can successfully cure diseases with chocolate, I’m probably never going to agree that one method is better than another. Instead, I tend to fall back on my favourite place to get advice, The Sunscreen Song:

“What ever you do, don’t congratulate yourself too much or berate yourself either – your choices are half chance. So are everybody else’s.” 
Advice, like youth, probably just wasted on the young – Mary Schmich (featured in Everybody’s Free (To Wear Sunscreen)) 

Part two coming soon... 
Thanks for reading, 

Little Miss Autoimmune

Body Image Part Two

A while ago, I blogged about the reactions people have to the weight-loss I’ve experienced with my diseases. In the year since I posted this, my stomach problems have gotten considerably worse, and I have continued to loose weight. In the last six months alone, I have lost around 15% of my body weight.

I get a lot of comments on this. The comment I hate the most “It’s good to see you looking so healthy.” What this actually means is: “it’s good to see you looking thin.” If you are reading this, please understand there is a difference between the word “Healthy” and the word “Thin.” Please try not to use them interchangeably, unless you are absolutely sure that this is the case.

It’s hard to explain to people why this is a problem. I’m sure many people would think loosing a substantial amount of weight without having to put any effort in would be a dream come true. I was quite overweight to start with, and so from many people’s point of view, this is a good thing. Though I am considerably smaller than I was, I'm not actually underweight, so from the outside I probably do look healthy.

I’ve made a point to react to these comments with an explanation of the fact that this weight loss is in fact not healthy. I’ve refused to accept compliments that include mention of my weight, nor any praise about the weight loss. This reaction baffles people. They cannot understand why I don’t just accept their comments. They often become more insistent, assuring me it doesn’t matter that I’m sick because I look so good now.

It’s an effort for me have these conversations. It would be so easy for me to just say “thanks” and let them think this is a good thing, but I don’t deserve praise for this. Loosing weight to improve your general health is usually something people have to dedicate time and effort to. That hard work (if done healthily) does deserve praise, but I haven’t done any of it. I strongly feel that if I don’t refute these comments, I am contributing to the body-image problems so so many people struggle with. If people believe that my experience is “worth it” it’s not a big leap to saying that recreating that experience with a box of laxatives or intentional vomiting is also “worth it.” It’s not. It’s dangerous, and no-one should ever be made to feel so bad about the way they look to think that this is a solution.

This is a hard post for me to write. When I posted about my weight the last time, I was very clear in how I felt. In the last few months, I’ve felt my own body image getting distorted. It takes me longer to get ready in the morning, as I find myself standing in from of the mirror feeling unsure of myself. I find myself plucking at my stomach and thinking “if I just lost a little more.” I’ve had thoughts of not wanting to get better, because then I’ll regain the weight, and that little voice creeps in saying it’s “worth it.”

It is not worth it. I saw my GP on Tuesday, and she was very concerned by the symptoms I described. She immediately referred me to a gastroenterologist, and said it was important that I go privately, as the hospital system will take too long. In fact she was baffled that my rheumy hadn’t done referred me already, but that’s another story. In the past she has celebrated any weight loss with me. This time, she could tell as soon as she saw me that the weight loss was not normal.

This weight loss comes at a high price. My hair is falling out, my skin is gross, and I have to plan my days around the times I know my stomach will be at its worst. Sometimes it changes its mind, and I am running back and forth to the bathroom all day, unable to leave the house. I often wake several times a night because my stomach hurts, and I get hot flushes and dizzy spells every time I eat. Most of all, I feel really really sick.

For me, feeling good is more important than looking good, but I realised something significant the other day. I actually didn’t feel bad about how I looked before anyway.

Thanks for reading 
Little Miss Autoimmune

Hair Loss

Some people's furniture is covered with cat or dog hair. I like to go a different route....

My hair is falling out again. After years of going through periodic hair-loss, I've got in the habit of sticking the loose hair to the shower walls, or in this case the back of the shower chair, as a way to stop my drains getting too clogged up.  I don't really think about it too much - once it's dry, it goes in the rubbish bin and I forget about it - but when I came back into the bathroom a couple of hours after having a shower this morning, I was surprised to see just how much had come out today.

I'm constantly picking bits off my clothing, and there's always a fair bit left on the couch or pillow whenever I've been sitting or lying somewhere. I've taken to wearing my hair up, as the temptation to run my hands through my hair leaves me with a handful of loose strands. For the first time, I've actually found small bald patches, as I seem to be loosing more from the sides of my head than the back.

I'm not really bothered by this. I am quite glad I decided to donate my hair, as I think this would be really disturbing if the strands were four times as long, but even with the bald patches, my hair has always been so thick, you can't actually tell the difference unless you're examining my head at close range.

I wanted to post this, because hair loss is one of those things that people don't really get about autoimmune disorders. I remember having someone say to me: "How come you're loosing your hair, if you're not on chemotherapy for cancer?" It kind of one of those questions that's hard to answer. The doses of chemo used for autoimmune disorders are significantly lower than those used for cancer, so they don't necessarily cause hair loss for everyone, but they can still have some effect regardless of what diagnosis you're on them for.

At the moment, I'm not quite sure what's causing the hair loss for me. I have recently upped my methotrexate dose, so it could be down to that, but I've also been flaring quite badly, so it could be that my body has decided to shut down anything of low priority, such as hair production, to conserve resources. Either way, I'm hoping it settles down soon. At least so I don't have to vacuum so much, if nothing else.

Thanks for reading,
Little Miss Autoimmune   

The Art of Not Falling Down

The other day I watched this video of author Chris Morphew  learning to skateboard. I didn’t click on the link hoping to learn any great life lessons – or even how to skateboard. I just clicked on it because Chris’ videos are usually pretty funny.

And this one was no exception. I laughed a lot, but some of the things he was saying resonated with me, and I wasn’t quite sure why at first.

The whole theme of the video is Chris showing off his signature skateboarding more The Don’t Fall Off. At one point in the video he says: “The Don’t Fall Off – it’s more like a lifestyle choice than a move. Even when I do fall off, it’s kind of I achieved The Don’t Fall Off, if I have the right attitude.” Now, this made me laugh as I’m pretty sure he was just saying this to cover the fact that he’d fallen off the board, but at the same time the sentiment rang true with me.

I never really had the inclination to learn to skateboard until after I got really ill, and things as simple as walking in a straight line became a challenge. I remember feeling at one point that I had missed my chance to try things like skateboarding while I was healthy, and that was upsetting even though I’d never really wanted to do them in the first place. Sometimes I think maybe some day I could still try something like this. But then I remember that disability aside, I’m just totally uncoordinated, and once injured myself flying off an Ab Circle Pro (both hilarious and painful, so totally okay if you’re laughing right now!)  

Sometimes it feels like The Don’t Fall Over, is my signature move, and the biggest feat I will ever manage. Then sometimes it feels like I can’t even do that.

Just before Christmas, I had kind of a bad fall. I wasn’t hurt badly, other than winding myself by hitting a chair arm on the way down, but I landed in an awkward position and couldn’t get up again. I had to phone my dad to come rescue me in the end (thank goodness for cell phones!) It was the first fall I’ve had in a while, but there have been a few other near misses recently and it was enough to make me decide my current treatment plan just wasn’t working.

It felt like a step back at first – I’d gone from coping reasonably well, to not even being about to master The Don’t Fall Over. But I think the idea of “it’s kind of like I achieved The Don’t Fall off, if I have the right attitude” is very true. Yes, I did fall down but I didn’t fall apart. I knew what I needed to do in order to try and keep my health stable, and I still managed to keep on top of all the personal and work things I needed to do.

Even if I am falling over a bit more frequently, I’m still smiling and so I’ve got the attitude of staying on my feet, even if I'm technically on the floor.

I don’t know Chris personally, though I have read his books and did meet him briefly when he came to Wellington as part of the Storylines festival which I was volunteering at.

I’m pretty sure he didn’t intend any of this to be the hidden meaning behind his video about skateboarding, but the message was there for me when I needed it anyway. So thanks Universe (and probably thanks Chris too.)

- Little Miss Autoimmune.   

Butterfly Rash

It's summer in New Zealand, and for me summer means bad flares.

According to the stats, a lot of people end up on this blog after image searching butterfly rash, malar rash, SLE rash or some other variant of the same thing. They end up on this post I wrote when first diagnosed with lupus, and I'm pretty sure a picture of me in face paint is not really what they're looking for. 

I've been meaning for a while to post a proper picture of the butterfly rash I get, but it's been a little difficult to get a decent photo. Mainly because when it's bad enough to warrant a photo, I'm usually pretty unwell and don't have the energy to try very hard. The rest of the time, the rash doesn't look that different to sunburn or rosy colouring so there seems little point in capturing it on film. I've got an appointment with my dermatologist coming up, so when it came up badly on Saturday night I took this photo.

Butterfly/malar rash

The lighting's in this picture isn't great but you can still sort of see the redness and swelling across my cheeks and the bridge of my nose. For me, it comes up very intensely at night but is usually not too bad during the day. 

Little Miss Autoimmune

How to be happy

Every so often, I check the stats on this blog to see how people are finding it. I don’t do this with the intention of changing anything; it’s just interesting to know what people are looking for. And sometimes kind of funny, when someone has searched something like “what to do when you vacuum up a pair of stockings” and ended up on one of my posts. Sorry to whoever that was – I really doubt you found anything helpful here!

Last night, though, I found some search keywords that caught me off guard. “How to be happy with autoimmune” and “Upset over confirmation of lupus.” I don’t know if this was the same person searching, or if it was just a coincidence. Either way, I really felt for the person.

After seeing this, I wondered if they had found anything helpful on here. Most of the time, I’d consider myself to be a happy person, even with all the health problems. But I haven’t always been. Each diagnosis has hit me pretty hard, and I have suffered from periods of depression in the past.

Recently, I was asked what my advice would be for someone newly diagnosed. This probably ties in to this quite well. So, this isn’t quite a “how to be happy” guide, but this is what I want to say to people newly diagnosed and to the person who made those searches, if they happen to stop by here again.

Allow yourself time to grieve.

Every diagnosis, I’ve had a period of grief for. At the start of this year, I was very down after being diagnosed with lupus. A few months ago, I had some very tearful weeks when that diagnosis went away again. It’s normal to felt kind of crap when you’ve just found out you have a chronic illness or when you’re feeling stressed out by symptoms that don’t yet have a diagnosis. Cry if you need to. I’m rather fond of watching sad movies and books, and pretending I’m just crying for the fictional characters, but crying just for yourself is all good too. Don’t listen to anyone who tells you to stop moping, or asks you “when you’re going to get on with your life?” Like any type of grief you need to do it in your own time and in your own way.

Find support.

Whether it’s in real life, or online, getting in touch with other people with chronic illnesses was one of the best things I ever did. Ask questions, or just have a rant, with people who understand what you’re going through. If you’re not sure where to start, have a look at Super Young Arthritics of New Zealand on facebook – it’s worldwide, not just NZ and full of awesome people.

Laugh. A lot.

Funny movies, good friends, whatever it is that works for you. Do things you enjoy. If you can’t do the things you enjoy because of pain or fatigue, are there parts of the things you used to enjoy you can still do? Are there some hobbies you can still do, even if you can’t do all of them? What is it that you like about these activities? Is there something else that gives you the same feeling? Remember it’s not all or nothing. Just because you can’t do something in the way you used to do it, doesn’t necessarily mean you can’t do it all.

Enjoy the ridiculous.

I have a pretty dark sense of humour at times. I’ve always been a fan of laughing at myself, and having chronic illness does provide a lot of material. Sometimes it confuses other people, when I laugh about the fact that I got stuck on the floor, or some other ridiculous thing that’s happened. Believe me, I’m not laughing at the time. But afterwards, being able to see the funny side really helps me. I think this has also helped me, when it comes to being more open with people about what’s going on. Sometimes it’s hard to tell people about the illness stuff, because I don’t want people to think I’m complaining and I don’t want to bring them (and myself) down. At the same time, I’ve always been someone who needs to talk about things to process them. For me, talking about the funny stuff, and laughing about the ridiculous things that happen, has often worked as a good compromise.

There’s also a slightly malicious side of me, that enjoys messing with people a little. When people ask me why I walk with a crutch, sometimes I’ll tell them I got bitten by a mountain goat or some other silly story. Even if you’re not actively trying to mess with people, their reactions to stuff can be pretty funny. I’ll never forget the day I’d left my front door open, and a poor delivery person walked in on me injecting my stomach with methotrexate (I did explain I’m not a drug addict, but I’m not sure she believed me.)  

Everyone has stories about weird or funny things that have happened to them in life. My guess is, the delivery woman went home and told her friends about the strange woman she walked in on, injecting herself. Illness doesn’t have to be off limits from these crazy stories.

Tell someone how you’re feeling.

Whether it’s your doctor, or a friend or family member, if you’re feeling really down make sure someone you trust knows what you’re going through. If the first person you try telling doesn’t get it, talk to someone else. Going to a counsellor can be really helpful as well. I worked for a mental health helpline for years, and few times when I was in a bad space, I did call the very service I worked for myself. There’s absolutely no shame in asking for help or support. And if it goes from feeling down, to thoughts of hurting yourself, please seek support immediately. Things can always get better, even if it doesn't always feel like that.

Thanks for reading

Little Miss Autoimmune.

Cooking for Gluten-Free Guests

Last night, I had dinner with my dad and some family friends. One of the friends had made the dessert, and she admitted she’d considered telling me the base was made of gluten-free biscuits when in fact it was made of Digestive Wheat Biscuits. While I was very thankful she did own up, and admit the food was gluten-packed in this case, I know very well she’s done similar things in the past and only admitted in when it’s far too late and I was already suffering the consequences of being glutened. 

For anyone else who’s considering lying about the content of their food – PLEASE don’t do this. It’s not about the person being picky, the consequences of eating food when you can’t safely do so are usually pretty hideous, and can even be life-threatening. Even if you think the person is exaggerating their allergy, are you willing to bet their life (and your friendship) on it? I know I for one would much rather be hungry than sick, so if the food's not allergy-friendly just let the person know.

In my case, Coeliacs Disease isn’t life-threatening, and this was not a case of the friend thinking I was exaggerating – she just didn’t really understand what Coeliac Disease is. After a quick explanation of the long and short term effects of it, I’m confident she won’t be doing this again.  

When you first get a diagnosis of Coeliac Disease, it can be kind of intimidating not knowing what to cook. Even more intimidating, figuring out what to make if you’re having guests over and they’re gluten-free but you’re not. I often get asked what my advice is for catering to gluten-free guests and these are my top tips. They may also be helpful coming up to the holidays if you’ve only recently been diagnosed.

1)    Whole food are often naturally gluten free, i.e. meats, eggs, fruits and vegetables – basically anything that’s pretty close to the state you would find in nature. Be careful of anything that comes in packets though, as these may have extra bits and pieces added. Always check labels!

2)   When thickening things like soups and sauces, you can easily sub rice flour, which is gluten free, in place of normal flour (again, check the labels to make sure.) I’d actually recommend doing this for sauces and soups even if you’re not gluten-free, as they come out smoother and freeze better.

3)    If you’re making a pasta dish, you can sub GF pasta for regular pasta pretty easily. They cook in about the same amount of time, and have a similar texture. Probably best to ask your guests for recommendations for brands, as these will vary from country to country. I always go for a brown rice pasta, rather than a white rice or corn one, as brown rice is a bit easier for sensitive tummy’s to process. When it comes to bread on the side of dishes – you can buy some gluten bread yourself, or ask your guest to bring a couple of slices with them. Most gluten free breads taste better when toasted or heated, so you may want to try that.

4)    Desserts: Creamy desserts are more likely to be gluten free. Recipes for custards, Panacottas, homemade ice creams, ambrosias – all those kinds of things – are often gluten-free already or can be easily converted. Many bought ice creams or frozen desserts are also gluten free, and will be labelled as such. Meringues and Pavlovas are also usually an option – just steer clear of the malt vinegar!

5)    If you want to convert a favourite cake, biscuit, or slice recipe, this is my method. It took much experimentation, but this does give results very similar in flavour and texture to the original recipe. So much so, that people often don’t realise it’s gluten free.

                  Cakes: Replace the flour with half ground almonds/half rice flour. Use a                                 gluten-free baking powder (most supermarkets stock this.)

                        Slices: Replace the flour with half ground almonds/half rice flour. Omit                                       the baking powder.

                        Biscuits: Replace the flour with one third ground almonds/one third 
                                          rice flour/one third corn flour. 

Of course, as always, check the labels of any other ingredients. Things like chocolate chips or vanilla essence may have gluten in them, but there will usually be at least one brand that doesn’t.

These tips only apply to gluten-free. If your guests are grain-free, dairy-free, egg-free, sugar-free, soy-free, or have other allergies, as well – you’ll need to check with them for details of what they can and can’t eat, or you may like to have a look at websites such as Allergy Free Alaska, or Against All Grain (there are lots of others but those two are my favourites.) If you’re not sure about a particular product, ask. I can’t tell you how many times someone has very kindly bought a gluten free product for me, only to discover it contains apple or cider vinegar and I’m allergic to apples. 

As always, this is not intended to be medical advice. If you’re not sure about anything, check with your health provider as they will be able to give you far better answers than I can.

If you have any other tips or question you’d like to share, feel free to add them in the comments.

Thanks for reading

Little Miss Autoimmune.