Friday, May 15, 2015

Gluten-Free is Not a Personality Type

The other day I came across this article. It annoys me so much. For so many reasons.

Feel free to head on over and read it for yourself, as I'm quite aware my interpretation of this is more than likely biased, but the TL;DR is the author of this piece feels that "ordinary" eaters like herself are being squeezed out by people with allergies and fad dieters.

Okay, so firstly let's go hang out in the supermarket where there is less than quarter of an aisle dedicated to gluten-free food (which, by the way, does not in any way exclude ordinary eaters as you can safely eat all of it) and the REST OF THE FRICKEN' SUPERMARKET filled with almost all gluten-populated foods, and tell me again how you're being marginalised.

This idea seems borderline delusional to me, but it's not what annoys me about this article. It annoys me because it feeds into the wide-spread idea that people who go gluten-free or try other diets are only doing it because they are following the latest "fad." Yes, I'm sure there are some people who are elitist about diet, and are doing whatever health craze is currently most popular. I've heard about these people. I've seen them in movies, and parodies and I've certainly heard "ordinary eaters" complain about them.... but I've never actually met anyone like this.

The people I know who have special dietary requirements are all incredibly lovely, genuine people. They realise that their diet can be inconvenient, and do what they can to minimize its impact on other people. NONE of them think that having an allergy is a "badge of honour"; they perhaps just don't feel as ashamed of their affliction as some ordinary eaters like the author of this article seem to feel they should be.

I assume the type of people described in the article do exist, but my guess is that their behaviour has less to do with diet itself and more to do with the type of people they are. If it wasn't about a diet they would be behaving in the same way about some other topic-de-jour. You can't really blame diet for that and quite frankly, if your friends really are behaving in this elitist way then maybe it's time to take a good look at who you are choosing to associate yourself with, because I think that may say more about you than it does about anything else.

This article also implies that any diet is nothing more than a whim that can easily be changed. To be fair, the author of the article does state:
 "I'm certainly not inferring that food allergies and intolerances are made up, or that those who suffer desperately from them are all fussy malingerers."
But whether or not it is your intention, writing an article like this tars us all with the same brush. The comments are littered with people saying things along the lines of: I have a friend who has a REAL food allergy, and she almost never talks about it. And then I have this other friend who claims she has an allergy, but I saw her eat gluten once, and she just goes on and on about it. I think she's making it up. If you've ever found yourself thinking something like this, has it ever occurred to you that your friend talks about her food issues a lot because you don't believe she has a real allergy, and she's scared you'll put gluten in her food if she doesn't go on about it?!

I do get that sometimes it might seem like food intolerances aren't a big deal, especially if on occasion you see someone who is gluten-free eating something containing gluten. Sometimes humans do things that aren't good for us and sometimes we eat things we're not supposed to. This may lead you to believe that people's difficulties with food aren't real... or you could have a bit more compassion and come to the conclusion that eating a restricted diet is hard. People don't always have the will power to give up immediate gratification just because it's going to make us sick later. If this is difficult for you to understand, think about the last time you or someone you know got really drunk. You probably knew, as you were drinking, that it wasn't good for you, and was potentially going to make you vomit (or at least have a hang-over the next day) but you did it anyway.

Even if a person's diet is not about an allergy or intolerance, and just about "wellness" - just take the time to consider the fact that people don't generally go on a quest for "wellness" if they are already healthy. Whether the problem is a physical illness, wanting to lose weight, or just general unhappiness with their life, having a bit of compassion and support for what someone is going through and their attempts to help themselves would go a lot further than getting irritated because they occasionally post about it on social media. After all, the stuff you like to post on social media is probably irritating to at least a few people as well.

I'm still struggling to understand how exactly it impacts on so-called "ordinary eaters" that other people eat differently to you. Did we at some point infer that we care what you eat, or feel that you need to eat identically to us? Because I'm going to let you in on a little secret: we really don't. Eat nothing but chocolate all day if you want - it makes absolutely no difference to me.

The author of the article claims that her problem with diets is that we should be focusing on bigger issues:
"I'd much rather they focused on meatier problems, like how we tackle food insecurity (that's not knowing where your next meal is coming from, not worrying if your buns look big enough) in Kiwi families."
Reality check: you're writing an article about how other people's diets annoy you. Don't try to claim the moral high ground about focusing on bigger issues.

For the last few months I've been thinking about trying dietary approaches to get better control over my diseases. I'm not doing this because I want to go off my medications; this is not a case of me rejecting medical science or being "chemophobic". I'm thinking about trying to heal myself with food, because there are no more medical options for me. If I want to be healthier, I am going to have to figure out how to do it myself.

Initially I was too embarrassed to tell anyone that I was contemplating doing this, because I thought the reactions would be ones of derision, just like the attitudes displayed in this article. But the reality is, I'm tired of being exhausted and in bad pain all the time, and it's really distressing to have to deal with the potenital for falls or loss of function on a daily basis. I'm willing to try drastically altering my diet, because I'm not ready to give up and simply watch as my health and ability to function deteriorate. It may not help, but sitting on my ass doing nothing certainly isn't going to help either, and this at least has a chance.

Now, I've sure my friends have gotten sick of hearing me talk about vegetables over the last few weeks, but they also get that doing this is important for me, and they're being supportive of that, because that's what friends do.

Being an ordinary eater is not a problem, it's a privilege. Enjoy it, but please try and take the time to be grateful for it too.

Thanks for reading,
Little Miss Autoimmune.

Tuesday, April 7, 2015

The Last Year (a blog on love and stuff and things)

Written 2nd April 2015

2nd April 2014
Today facebook added a photo I posted exactly one year ago to my timeline. Normally I find these kind of posts mildly irritating. Only mildly though, because they are not in and of themselves offensive; they just serve as a reminder than facebook is probably not the best use of my time, and that I should really stop reading the newsfeed.

This photo caught me off guard though. I remember when I took it. I had been incredibly sick, just a few days before, and basically hadn’t gotten out of bed since. I had cried a lot in the days leading up to this, and so my eyes were very puffy and I still looked sick, but then a package had arrived in the mail, with this hoodie in it, and so I had put it on and taken a photo to try and cheer myself up.

Not long before this illness/new-hoodie-photo-taking, I had met a boy. In my head, this all happened the same week, but when I think about it properly I don’t think that can be accurate. It didn’t happen too far apart at least. I had talked to this boy, in part, because this wasn’t the first bout of bad sickness I had had that year. The first had been really terrifying and confronting, and had forced me into a sort of “bucket list mode.” I felt like my time was running out, and so I’d stopped caring if I made a fool of myself, got over my natural shyness, and just started doing things to make the most of my life. Talking to him was one of those things. When we met, this boy had told me about an event coming up, and I had decided to go, mainly because the event sounded cool but also because I wanted to see him again.

And then the second sick episode happened.

I was too unwell to go, but more than that, I also thought I shouldn’t. It reminded me that I was a sick person, and that I shouldn’t inflict that on anyone else. And so I forgot about the boy.

A few months later, I was looking at a facebook event I’d been invited to, and I realised he was invited as well. On impulse I sent him a friend request. Then panicked and messaged a friend to ask if she thought that was a weird thing for me to have done, given that I’d met him only once and that was several months ago (she said yes, it was a little bit weird, but given that facebook is weird, it was probably okay.) Then while I was talking to her, he accepted my friend request, and we started talking.

We hung out a few times. I was never quite sure if that was just as friends, or if there was the potential for something more. Honestly, that freaked me out. I liked him, but I also really like clarity. The in-between feeling was hard to deal with. And still, in the back of my mind was the idea that I was a sick person and shouldn’t be inflicting myself on anyone else. Me dating someone would mean they just ended up looking after me, wouldn’t it? That wasn’t fair. That feeling grew inside me, until I told him as much. I still wasn’t sure whether he saw me as anything more than a friend, and saying anything felt horribly presumptuous, but I basically told him I was too sick to be in a relationship, and that we should just stay friends. So that’s what we did for the next few months.

Right now I am sitting in my living room, with incredibly puffy eyes from spending the last few days crying, and wearing a T-shirt that the boy left behind (oh my God, I am such a cliché right now!) Despite everything I thought about myself, and what it meant to have an illness, the boy and I ended up falling in love. Unfortunately, we fell in love right after he had made the decision to leave the country in a few months’ time.

It was a case of bad timing, but we decided to spend the time left together. Much of that was spent avoiding the subject of him leaving, though he did ask me at one point if the fact that he was leaving made it easier for me. The answer, I guess, was yes and no. It made it easier at the start, because I felt like I was talking a risk by allowing myself to be with someone and so I thought that if it went horribly wrong, it would be easier for both of us to be able to make a clean break. It also made it so so much harder, because I was letting myself fall in love with him, knowing he would soon be gone.

It was scary for me to be in a relationship with someone. Every time I had a bad day with my illness, it was really hard to let go of the part of me that wants to hide all that and protect the people I care about from it. Every time he helped me when I was sick, I felt guilty and like it was unfair to him. But then after a while, I started to see that I was caring for and helping him as well, just in different ways. I also realised that a lot of what I was feeling was not just about having an illness, but about many different fears I carry inside me, and blaming it on being sick was perhaps just a convenient excuse I had given myself. Being vulnerable is hard, and sometimes it feels easier to be alone with it. But something being easy, doesn’t always make it best. Being vulnerable with another person IS hard, but it can also feel amazing when it’s the right person, and they care enough about you to want to see the not-so-pretty parts of your life as well as the best bits.

The boy left a few days ago.

I’ve spent the last few weeks answering questions about whether I am going with him, whether he’s coming back, or whether we’re going to do the long distance thing. The reality is, none of those options were really going to work for us at this point in time. Of course there was a big part of me that wanted to cling to him, and tell him to stay, but as hard as it was for me, I told him to go. He has things to see and do in this world, and I want him to do that, even if that’s not easy.

Right now, I am incredibly sad. I miss him more than I thought was possible (hence wearing his T-shirt) but I don’t regret falling in love with him. The last few days, I have felt like I will never get past this heartbreak, but I keep remembering the fact that I only feel this sad because I have had something wonderful in my life, and that really does make this sadness worth it. My feelings about my illness nearly stopped me from having that, and I’m going to try to remember that particular fact in future. My illness is a part of me, but it’s not me, and I need to remember that when I feel like holding myself back from things because of it.

Thanks for Reading
Little Miss Autoimmune  

Sunday, October 12, 2014

Last Post For A While

This is going to be my last blog post for a while. I have to admit, when I’ve seen other people write posts explaining why they’re taking a break from blogging (or rather not explaining, as these posts are often quite cryptic) I’ve always thought it was a bit strange. I don’t imagine that if I stopped blogging, without a post saying why, that many people would actually notice, but as I’m sitting down to write my own version of this type of post I now understand why people write them. I’ve been contemplating the reasons behind this for a while now, so apologies if this gets a bit long and rambley.

The last time I stopped blogging for a significant period of time, I didn’t write any kind of explanation. I just stopped, because things were so bad with my health that I was struggling to convince myself I even wanted to be alive anymore, and writing about how awful things were didn’t seem like it would be of use to me or anyone else. Then, amazingly, I went into remission and I was too busy enjoying my life to think of writing about it. This time, my break from blogging has less to do with my health itself and more to do with my attitude towards it.

Recently I’ve caught myself in several unhealthy thought patterns about my illnesses, some of which have also been noticed and pointed out to me by people around me. After posting this piece, a friend sent me this message: 

“I hope this is OK to say, but have been thinking about it since I read your latest blog post. You mentioned a few times about 'being a sick person.' I just hope you know that this is not how I (and I imagine any of your other friends) view you. You're my friend Helen who happens to have health problems and we love you!”
I hadn’t registered that I had referred to myself as “a sick person” until my friend pointed it out. A couple of times recently, people have told me I need to be careful about letting illness become my identity. Both times, I felt myself bristle, and thought “what the hell are you talking about? There is so much more to me than my illnesses!” But once I managed to put aside my defensiveness I realised there was some truth to what they were saying. They probably weren’t trying to say that there was nothing to me apart from my illnesses, or that my illnesses were the most interesting thing about me. Instead I think maybe they were trying to caution me against overestimating the significance of this part of my life. When I refer to myself as a sick person, it does give “sickness” more importance than is warranted. As my friend said in her email, I am Helen, who happens to have health problems. Illness is a part of my life, and there’s no use denying that. But it’s not me
When I let illness become this significant, it can be easy for me to start discounting the other (good) things in my life because the illness feels all consuming. I realised I have been feeling some shame towards my illnesses, as if they somehow make me “less,” “broken,” or even “worthless.” At times, I’ve been feeling the need to downplay and hide them. For example, I find myself really reluctant to meet people in person if my first interactions with them have been by phone or email, as I feel as soon as they see me in person they will see I walk with a stick and it will change their view of me. At the same time, anytime I do downplay my illnesses I feel as if I am deceiving people, like they wouldn’t want to be around me if they knew what things were really like.

A couple of weeks ago, I fainted when I was out for the evening. And, because I had pretty much no warning that it was going to happen, and fainting usually makes me a bit disorientated anyway, I then had a panic attack soon after coming around. Everyone around me was very nice about it, but I found myself thinking: “Well, that’s that. They know what I’m really like now.” I felt that in their eyes, I would be reduced to someone who is frail and ill and nothing more. But then a couple of days later, one of the people who’d been there that night got in contact with me, not because I had been unwell, but simply because they had liked a poem I had written and read that night. It made me realise that just because I was busy discounting all the good things because of my health, it didn’t actually mean everyone else was. 

The other day, someone came up to me and asked if I was walking with a stick because I got into a skateboarding accident. I was about to explain, that no, I walk with a stick fairly permanently because I have lupus, and I felt the familiar sinking feeling in my stomach that comes with that conversation and the questions it usually raises. But then I stopped myself, laughed, and instead said: “Yes, that’s exactly what happened.” Now, I’m not exactly advocating lying, but it was really freeing to realise that I don’t actually have to explain, or apologise for, my existence.

I have fallen into the trap of letting my illness become my identity and I need to step away, and figure out who I am separate from that. This blog isn't the thing causing me to create this identity, but taking a break from blogging is a way to mentally separate from it.  

I want to say a big thank you to everyone who has read my posts over the last five years. It’s been a long journey, and it’s helped having people along for the ride with me. I’m pretty sure I’ll be back here again at some point in the future, but until then I wish you all health, happiness, and a whole cutlery store full of spoons!

Thanks for reading,
Little Miss Autoimmune

Monday, September 22, 2014

A (love?) letter to my own body

Dear Body,

I want you to know I hear you.

I was pretty unimpressed when you wouldn't let us get out of the bath last night. This is something I've always worried about, but somehow I still managed to be surprised when it finally happened. I guess because you'd been behaving so well lately, you'd lulled me into a false sense of security.

I was pretty angry with you, Body. As much as I try to be Zen about the all odd things you insist on doing, this time you really pissed me off. And truth be told I was a bit scared. Yes, we have things in place to make situations like this okay... but all of the possible solutions still required either pain or embarrassment, and I just didn't want to deal with that. 
The thing is though, once it became clear we weren't going anywhere, and I made the plan to just top up the hot water and wait it out until you agreed to start working again, I realised this was your way of trying to make me listen. You don't have that many ways of communicating with me, do you Body? And so you tend to pick the ones that you know I'll take the most notice of - dropping my blood pressure so I have unplanned lie downs, making my limbs stop working properly so I have to stop moving, and of course our old friend Pain.

I know you think I don't listen, and sometimes you're right. I keep pushing you when you're telling me that you need to stop; that you need to rest. I haven't been doing that good a job of taking care of you lately, have I? I haven't been sleeping enough, or eating enough (though if you could ease up on the nausea a bit, that would help!) I've been making you do too many things, using up more spoons than we have, and I've been worrying and stressing out too much.

But I want you to know, I hear you.

We've been here before. At the start of the year, I didn't listen to you, and we ended up in a pretty bad state. I promise you, I've learned from that. You need to trust me, Body. Sometimes I am going to push you more than feels comfortable, but you need to trust that when I do I will have rest planned for you afterwards. Guess what, Body? We have the whole week off next week! And I'm going to do better on feeding you nourishing food, getting you to bed early, drinking enough water, remembering to take meds on time, and getting gentle exercise. I'll even give the relaxation stuff another crack too. In return, can you please just hang in there and not freak out? 

Ultimately, I know that you are just trying to protect us with all your over-zealous immune-system activity. Your methods are pretty are pretty flawed, but I know that somewhere deep down it comes from a good place. So really, Body, we both want the same things. We just need to trust each other, and give each other a break sometimes.

Lots of love,

P.S. Thanks for finally letting us get out of the bath without help. I really appreciate it xoxo

Little Miss Autoimmune

Thursday, September 11, 2014

Acceptance Goes Both Ways

Molly Stick and Tilly hanging out
Learning to accept things is a big part of living with chronic illness. For a long time I resisted that idea, as acceptance seemed like giving up. I wanted to keep fighting for something better, rather than “give in” to being a sick person. But after going through the pain clinic programme (and a bit of mental adjustment) I learned that acceptance is not about giving up. Instead, it’s about continuing on with your life, still working towards goals or carrying on with with things you love, but just realising that now illness is going to be a part of that. Rather than trying to fight against it to get what you want, you give it a hug and convince it to come along for the ride with you.

I think these days I find it easier to accept the bad parts of my health than I do the good moments. I’ve never thought of myself as a particularly pessimistic person, but when things are good, I tend to assume it’s only temporary. I guess a lot of this is down to experience. For the last two years I’ve gotten really excited over the fact that my symptoms got so much better over winter, thinking that I was heading into remission, only to be disappointed when they worsened again in summer. This winter I’ve been the healthiest I’ve been in about 15 years, which has been fantastic, but there’s also been the nagging thought in the back of my mind that it’s all going to come crashing down as soon as the weather starts to get warmer. Perhaps it’s just the fact that I grew up with a very superstitious mother, but I always feel like if I start making plans, allowing myself to do more or changing things in my life to suit my good health, I’ll be tempting fate and the universe to go: “haha, just kidding, here’s a MASSIVE flare!”

But acceptance should go both ways. I should be able to accept things being good in this moment, without mitigating that with what I think they’re going to be like in the future. I should be able to do more, and enjoy life the way it is right now, without worrying that doing so is going to come at a cost.  

Last week I was thinking about the problem of poor MollyStick falling apart. In the week after I hurt my arm, when I was walking without her, I realised that a lot of my reliance on her is psychological rather than physical. No, I can’t get up and down stairs or steep slopes without her, and I definitely can’t get on and off buses unaided, but when it comes to just generally walking around I’m usually fine. My lack of confidence with walking was more about the possibility of my legs becoming unsteady, than it was about them actually being unsteady (though there was a bit of that too!)

Ideally I would like to be able to go out without a mobility aid on the days I’m feeling well. Before I started walking with Molly Stick, I could keep my health problems private if I wanted to, because there weren’t visible signs for people to ask about. There are times I really miss that, as it can get exhausting having that conversation over and over, and sometimes it would be nice not to feel like a sick-person all the time. However, going out without a stick would mean I couldn’t go anywhere involving stairs, buses, or steep slopes which rules out a lot of Wellington! And if I did start to get tremors or bad pain, it would be a lot harder to deal with unaided. So I started thinking about what options might suit that, and I realised a folding-up stick that I could put in my handbag when I don’t need it would be perfect. It would be there when I needed it, but I wouldn’t be stuck with the all-or-nothing element that comes with a more cumbersome crutch. Folding up sticks are slightly less secure than crutches, as you don’t have the bit that goes around your arm, but since things have been better lately, I might be okay without that extra security all the time anyway.

Now, there’s a part of me that thought even considering this was bound to make things worse again. And truth be told, I did have kind of a bad fall the next day, and had to press my medical alarm as I'd landed with my arm pinned awkwardly (and painfully) underneath me, making it impossible for me to get myself up. For a couple of hours, the superstitious part of my brain went into overdrive, not helped by the ambulance officer telling me I seemed far too unsteady to be walking with anything less than a walking frame, and the fact that I had a second, smaller, fall in the morning which split my toe open. But the reality is, I have falls sometimes. And I have tremors sometimes. I’m especially likely to have falls and tremors when I’m really over-tired, which I was that day, and I was probably in a bit of a flare anyway. None of that means that all the good days I’ve been having lately are all going to be replaced with ones like that. It just means that I had a bad day.

Today, my doctor and physio both signed off on new (as yet to be named) folding stick. I walked up and down some stairs with her, and I’m feeling really happy about the freedom this will allow me. This might sound superficial, but new stick is also very pretty with a silver and purple design, which makes me happy as well. Things may get worse again. I may find that new stick isn’t secure enough for me, and I may need to go back to using a crutch. But for now, I’m going to take a deep breath, accept that at the moment things are going well, and enjoy this. One of my friends suggested a little while back that when it came time for Molly to retire, and a new stick to take her place, I should throw a party to celebrate and for Molly to pass on her wisdom to new stick. This seems like the perfect way to tell the nagging superstitious part of my brain to take a hike, because right now things are good. 

Thanks for reading,
Little Miss Autoimmune.

Update 13/10/14 New stick's name turned out to be Tilly. It didn't all go smoothly at first - I kept forgetting that there wasn't a bit around my arm, like with a crutch, and so therefore kept letting go and dropping her. I also found my hand was getting really sore, as I felt the need to grip much tighter than I had with Molly. Both of these problem improved after getting a lanyard (I'd highly recommend one of these if you walk with a stick.) I have been trying to fold Tilly up when I'm out, to see if I can walk without an aid, but it turns out my right hip and knee start to really hurt when I do this. I'm going to keep trying short distances, but won't be walking completely without a stick anytime soon.

Saturday, August 23, 2014

To chemo or not to chemo

Yesterday I read this piece written by a fellow autoimmuner, Ashley, about her reluctance to call her rheumatoid arthritis drugs "chemotherapy." It was interesting timing for me, as I'd recently had a conversation where I'd referred to my meds as chemo and then immediately regretted using the term. Once it was out of my mouth, I realised it sounded far more melodramatic than I'd meant it too.

Ashley's article gave me some things to think about. Firstly, I'm truly sorry if I have offended anyone by using the term. I was in no way intending to "compete" or compare myself to cancer patients. My mother died from cancer a few years ago, and during her journey went through chemotherapy. I do understand that cancer and chemotherapy chemotherapy are horrible experiences, and I mean no disrespect to anyone who's gone through that by using the same name for my medications. 

I don't always refer to my injection as chemo. In the conversation I mentioned above, I'd been about to say I was going home to "shoot up," then realised that might be a bit inappropriate, so changed tack at the last minute and said I was going home to "do my chemo" instead. I usually just call my medications pills and injections, unless someone specifically asks what my drugs are in which case I explain that the injection is a low-dose form of chemotherapy, one lot of the pills are an anti-malarial drug (I actually took this same medication as a malaria-preventative at times as a child) and that I'm not quite sure what the third lupus med I take is. I also explain that the point of all of them is to squash down my immune system, so it won't be able to attack my own cells anymore.

So why do I use the term "chemo" at all?

Ashley suggests that for some people this might be a way to draw pity, or to misrepresent the situation to make things seem worse than they actually are. I don't think this is the case for me. I don't like having people pity me, and to avoid it I usually make jokes about my situation. This works pretty well, except for the fact that it does then make it harder to communicate the more serious aspects of these diseases when necessary. I find I can't tell someone something serious without wanting to follow it up with something funny or to cut the conversation off completely. As soon as I see people making what I call Pity Faces, I want to make the conversation lighter because it's hard enough to deal with my own feelings about this stuff without making other people feel upset as well.

In a way, using the word "chemo" makes it easier for me to communicate these serious aspects and answer people's questions without having to actually have the conversation properly. Some examples of this are:

Question: Why are you vomiting? Why would you take a medication that makes you so sick? Isn't this supposed to be making you better?
Answer: Well... it's chemo. (Also, stop asking me asking me complicated questions while I'm vomiting!)

Most people think of medication as something that makes you feel better, so it's hard for them to understand taking something that at times makes you feel worse. Explaining that it's a low-dose chemotherapy helps people understand that while this might make me very sick for a few hours, it is ultimately still the thing keeping me healthy. No it doesn't make me as sick as someone receiving chemotherapy for cancer - it is only a fraction of dose - and no I'm not the same type of sick as a someone with cancer. But it is the same concept.

Question: Why did you just back away when I tried to hug you? I've only got a cold. Are you germ-phobic or something? (coupled with sad/offended look)
Answer: Sorry, it's just that I'm on chemo, so if I get a cold... I can get really sick.

I hate offending people, and, depending on who you are to me, I probably would hug you back if you weren't sick. But when you're on any kind of immunosuppressant medication, getting sick - even just with a cold - does actually become a big deal. Something I've learnt the hard way after many respiratory infections! I used to try and explain to people that my immune system was squashed down by the medications I'm taking and therefore I can't fight off bugs. So, if they have a cold or the flu, I'd prefer to keep a little more distance than usual just for now. But by the time I'd got through that they'd either already hugged me before I could stop them or taken umbrage at my refusal. I also found the explanation didn't seem to stick. The next time someone was sick, we'd have to have the whole conversation again. Using the term chemo seemed to clarify this with people. Now, after I've explained once, people usually remember and automatically give me a bit more space if they're not well.

Question: Why aren't you coming out tonight? You seem fine.
Answer: Yes, I'm fine right now, but I'm doing my chemo tonight.

Not everyone gets side effects from autoimmune arthritis meds, but unfortunately I am one of the ones that do. I got very bad side effects on the tablet form because of the inflammation in my stomach, which is why I'm on injections instead. At lower doses, I didn't have too many problems, but now I'm on a higher dose I do get sometimes get nausea/vomiting, the shakes, bad headaches, or pass out, on injection night. It can mean that in a short space of time, I go from being fine to really not. So I don't go out and don't let people come over on the night I do it. I'm also a bit careful about what I plan for the next morning as if I do it too late in the evening I'm still sick the next day. I don't want people to feel sorry for me about this, but I do want them to understand that I'm not just ditching them - I would like to be there for whatever it is they're wanting me to do, I'd just also like to save our friendship from ending with me spewing on them! 

Question: Why aren't you drinking? One drink won't hurt. Oh, go on...
Answer: I can't, I'm on chemo.

To be clear, I only end up saying this if people won't accept "No, I really don't want a drink" and continue to press the issue. This one is complicated, because there are a lot of reasons I don't drink and blaming it all on my meds a little misleading, unlike the other examples I've used here which are honest answers. I have had problems with both my liver and kidney function in the past, because of my medications. These are both okay at the moment, but the tests do still fluctuate a little. When I was still drinking alcohol occasionally, I did notice a correlation between when I had a drink and when my tests results went out. The other major reason I don't drink is that I get uncontrollable muscle spasms and tremors when I do, which are inconvenient and distressing for everyone involved. This isn't something that people can be expected to comprehend, unless they've seen it, so putting it all down to "being on chemo" is the easiest way to get the message that I can't drink, and won't change my mind, across succinctly.    

 As I said, Ashley's article has given me a lot to think about. Again, I am very sorry if my using the term in this way has upset anyone. This wasn't my intention, I just hadn't thought through how it might feel for some people hearing a word like "chemo," when it's not fully explained. I'm going to give some consideration to whether I continue to use it, or whether it's time to find a new way to communicating this stuff to people when necessary.

Thanks for reading.
Little Miss Autoimmune

Saturday, August 9, 2014

Why My Crutch Has a Name

My crutch’s name is Molly Stick. First name Molly, last name Stick. I’ve found this to be quite a good personality test. People tend to react in three distinct ways.

1)      They totally get it. Their own car or phone probably has a name, and there is absolutely no question in their mind as to why Molly has a name. I like these people a lot.

2)      The idea of naming inanimate objects is foreign, but they’re willing to go along with it, much like they would when indulging a small child's imaginary friends. They’re easy to recognise by the slight hesitation every time they use the name ie. Do you need… “Molly”… Stick? They do tend to write “Molly Stick” in quotation marks as well. These people are really sweet for trying, though I do always wonder if they secretly think I'm an idiot.

3)      They find concept of naming inanimate objects very weird and it makes them uncomfortable. They generally refer to Molly as “your stick thingie” or some variation of such. It’s very tempting to start naming other random objects around these people just to confuse them – “And this is my door handle, Susan… and my cushion, Barry…”

Last week wasn't the best week. It started out okay, but then there was an incident involving a trestle table, and my arm getting mangled when I tried to put it up by myself. I’m not entirely sure how I thought that was going to end – me getting mangled is kind of the only logical conclusion to that scenario – but these things happen, so I’m trying hard not to be too pissed off with myself. Unfortunately, to complicate things further, it was the side I use Molly Stick on, so she had the week off while the swelling in my arm went down.

I always thought it was stupid when people said things like: “I feel naked without my (insert object of importance to them)” but that's exactly how I felt about going out without Molly. I’m normally pretty good at faking confidence when talking to people, but I discovered feeling unsteady, and physically unsure of myself, brought my natural shyness out of hiding. It also didn't help that it was a particularly unsteady week as, after several months of being fine, my legs lost the plot on Thursday and started spazzing out again. I'd been getting signs that this was heading my way for a while. I'd had some unusual muscle spasms in my arm the Friday before, and I'd been feeling generally unwell all week. But living in denial is way more fun than accepting you're heading towards a flare, especially as I knew it was going to be harder to deal with without Molly!

Five or so years ago, when I first started needing a crutch, I felt pretty resentful towards the whole thing. It was hard not to see it as losing independence, mobility, youth… all of that stuff. I was reading Diana Wynne Jones’ Howl’s Moving Castle at the time, and I really liked the relationship the main character, Sophie, has with her walking stick. She talks to it, treating it as not only a physical support, but also a companion/moral support, and, as the story progresses, as a magic wand – it is Diana Wynne Jones after all! I decided to try doing the same thing, treating my stick as a friend, that is. It worked. I felt better about it, and I've referred to her by name ever since.

A few months ago, Molly started falling apart. I’ve had to replace a couple of parts, and she’s now sporting some lovely blue electrical tape (Kiwi ingenuity at it’s best!) One of my friends suggested it's time to think about replacing her, and I surprised both of us by getting choked up at the idea. Molly really has become a friend, and the idea of losing her is as hard to accept as it once was to accept her place in my life at all. I've realised Molly isn’t the thing taking away my mobility or independence – she's the one giving it back to me. 

Thanks for reading,
Little Miss Autoimmune