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

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  

Test Results

My theory that “no news means good news” when it comes to test results proved to be slightly flawed in that it doesn’t take into account when it’s actually “no news means your doctor just hasn’t had time to check the results yet.” At any rate, my GP rang me on Wednesday to tell the blood tests I had done a while ago had shown my B12 is quite low. I think you’re supposed to feel upset when you’re told there’s something new wrong with you, but honestly I just felt happy that it wasn’t anything more serious and that for once it's something easily solvable.

It always cracks me up that on the occasions I’ve gotten a phone call about tests results, I’ve always been doing something inappropriate considering what they’re telling me. When they rang to tell me I had coeliac disease, I was eating a box of whole-wheat crackers. When it was about my kidney function going south, my mum and I were making vodka cocktails (it was Christmas Eve, don’t judge!) And this time I’d just put some chicken back in the fridge in favour of making something vegan for dinner.

I know probably I don’t eat enough meat considering I already have iron-deficient anaemia, but the B12 is more likely low because of my stomach’s fun habit of deciding it doesn’t want to absorb food anymore. After a long time of my weight staying stable, some of the gut issues have reappeared and that has resulted in a couple of kilos disappearing again. I’ve been able to keep my iron levels normal with tablets, but given the weight loss at the moment, my GP decided to go straight to a B12 injection to give the best chance of it being absorbed.

I wrote this when I was five. I assume I’d just had my vaccinations (not entirely sure what the nutty friend part is about) but it did make me laugh how almost prophetic this statement is. As a five year old doing my best to avoid having any shots done, I don’t think I ever would have imagined someday I’d be injecting myself with medication every week, having regular blood tests, and occasional extra IM shots like this one, but there you go. I’m pretty blasé about needles these days, so agreed to let a student nurse do her first injection on me. She actually did an amazing job, and I barely even felt it. Fun times!  

A quick google search told me that a lot of issues I’ve been having lately, including the irregular heart rate, could be down to the B12, though there seem to be varying accounts of how long it takes for symptoms to appear. Most say there are various symptoms (the ones I’ve been experiencing) that can appear in the first few years, then a whole lot of much more serious ones that appear the longer you are deficient, so thankfully this should stop it progressing to that. I’ve also heard completely opposing stories from people as to whether they felt amazing straight away after the injection, whether it took them a couple of weeks to notice a difference, or whether they felt nothing at all.

So far I haven’t noticed any major change, but it’s only been a couple of days so I’m keeping my fingers crossed I’m in the better-after-a-little-while camp.

Thanks for reading,

Little Miss Autoimmune