I am a mosaic not a cookie jar

I was thinking today about how it feels when someone sees you as something that needs to be “fixed” when you’re a chronically ill person. I’ve tried to explain this before – usually falling back on saying “I don’t need to be fixed because I’m not broken” but I’ve come to realise that explanation isn’t going to work. Because they don’t believe you. In their eyes you are broken, and no amount of telling them you’re not is going to change that.

So I started thinking about it differently. What if I am broken, but that’s not really the point?

Imagine you own a cookie jar. It’s a beautiful cookie jar, a functional one too – so big and holds those cookies so well! And it can store other stuff as well – a multi-functional jar. Maybe sometimes you make punch in it, and serve it up at dinner parties, and everyone tells you how beautiful and wonderful it is.

Then one day the cookie jar breaks. Smashes. Like irreparable - broken into a million tiny pieces, some of it is now ground into sand, smashed. You devote days – weeks – to trying to put it back together. You spend hours on the internet, and talking to repair specialists, but all of them say the same thing: “I’m sorry, but this is too broken to repair.” But you don’t believe them. You go it alone, trying glue after glue. You even try some alternative repair techniques – you origami the crap out of that jar, trying to make it hold together. 

But none of it works.

You cry. You get angry. You spend days on the floor just lying in amongst the pieces.

And then one day you accept it. Your jar is broken, and it isn’t coming back. So you pick up the pieces, and you start to make a mosaic.

There are still days when you miss the jar, but as you work, you start to realise you are making something amazing. Some days you even look at the art you are creating, and you think it is more beautiful than the cookie jar was originally. You start to love it and become proud of it.

Then someone comes to visit. They look at the mosaic. Their face falls. You broke your jar, they say.

Suddenly the mosaic you worked so hard on doesn’t seem quite so beautiful anymore. Suddenly you feel embarrassed of this thing you have been building. It seems unimportant and useless, not like the cookie jar which could hold all the things.

I know someone who’s jar got dirty, they say. They cleaned it and it was good as new.

You should go to a repair specialist, they say

You are just not trying hard enough. You could fix it if you wanted to. Think positive!

I can fix it! It just a tiny crack.

And you start to wonder if you were exaggerating. Maybe there was only one crack, and you could fix it! So you pull apart the mosaic you have spent so long building, and you are hopeful that this time you will fix it – you will have your cookie jar back! And you try, and try again to fix it. You go to the woman who washed her dirty jar, and she washes the pieces, but that doesn’t put them back together. You go to another repair specialist, but they tell you there is no hope. So you try harder, and you think positive, and you pray and hope, and try again and again… but still it is broken. 

You have to give up again.

You have to grieve again.

You have to start the process of acceptance and making something good out of the pieces right back from the beginning.

This is what it feels like when someone wants to help fix or cure chronic illnesses. It feels like they don’t see all the good you bring into the world – all the beauty you have created around the hard parts… And maybe that is not how they feel. Maybe they do think the mosaic is beautiful, they are just convinced the cookie jar is better and are sad for you that you don't have it anymore. But that is not for them to decide, and it’s pointless and kind of hurtful to keep bringing it up when the cookie jar is gone.

I know that people are trying to help when they suggest fixes for my illnesses, and I do appreciate that they are wanting to make things easier for me. But there is a big difference between “This will fix you” and “I wonder if this might help?” and also a big difference between suggesting something and insisting that someone must try it. I don’t mind when people make suggestions – some of them I am really thankful for – but I do need people to do it in a way that respects the life I have now.

I am done searching for that cookie jar. I love the mosaic my life has become, and I’m not looking to go back. But if you can suggest a gloss that will make my pieces a bit shinier… then by all means tell me about it. I'm all for shiny pieces.

Thanks for reading,
Little Miss Autoimmune

Yes, You Still Have to Count Spoons.

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

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

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

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

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

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

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

Thanks for reading,
Little Miss Autoimmune

The Tortoise is Graduating!

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

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

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

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

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

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

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

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

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

Thanks for reading
Little Miss Autoimmune 

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

I have a doctor’s appointment tomorrow… and I’m scared.

I really would have liked this post to have a more succinct title, but this is pretty much what it comes down to. I’m seeing a sleep specialist tomorrow, and I am scared of ALL THE POSSIBLE OUTCOMES. :P

I’m scared he will have no idea why my sleep is so weird. I’m scared he will know and it’s something bad. I’m scared there won’t be any treatment options for me, but I’m also scared of treatment options because I’ve had such awful, sometimes life-threatening, experiences with medications and side effects over the years. I’m scared that trying any treatment could make my sleep even worse – it is entirely possible that it could – but I also know that if I don’t try, things could get worse anyway. I’m scared of the sleep disorder going away completely (as I’ve discussed before there are positives to it) but this winter things just got so so bad and I simply can’t go on like that. I’m scared because I’ve done a lot of work on myself in the last couple of months and have managed to get to a really good place, and I’m worried changing things could tip me back to somewhere bad. Mostly I’m scared because despite my best efforts to not get my hopes up about what this appointment will mean... I’ve totally got my hopes up, and I’m scared that I’m going to be crushed if this doesn’t work out well.

I know I’m not the only person who feels like this before appointments. When you have chronic illnesses, this thought loop is kind of just part of the process. For a long time I didn’t realise that, and thought I was the only one having such contradictory, sometimes irrational, thoughts. While I’d never wish illness on anyone, this is where it’s been really great to read other blogs, and have friends who are going through the same kinds of things, because you figure out that all the weird things you end up feeling are just normal reactions to an abnormal situation.

I could sit here and tell myself to be positive and say it’s all going to work out fine, but… well that’s not all that realistic. I’ve got no idea what the outcome of this will be, or even whether it’s going to be positive, negative or that good old beige in-between. I do know that I will figure out a way to be okay with it whatever happens. Because I always do.

Fortunately I have some pretty awesome friends, who’ve been supporting me through all of this, and one has even made an amazing offer to stay with me if I do try medications. Having someone there would really help me out with the fear of things going wrong, and would hopefully help to mitigate the effects if I do have a negative reaction. In the meantime I’m just going to have to deal with this appointment-anxiety. If nothing else, I do find it funny that worrying about a sleep-appointment is making me not sleep well. But maybe that’s just my twisted sense of humour.

Thanks for reading, 
Little Miss Autoimmune.

Stress, Panic and Fight or Flight

A few weeks ago I had some really stressful and distressing situations crop up in my life. Like not the usual, run of the mill too-many-things type stress, but the blind-sighted, there was no way I could have prepared for this, really-serious type stress. They were all separate, unrelated situations but unfortunately they all happened at the same time. Added to that, they happened at a time when I was on two different types of antibiotics for two separate infections, and I also had a fair bit of the ordinary type of stress going on as well with a busy period of work, study and other personal commitments.

I handled the situations as well as I could, and for the most part they had good outcomes. The thing was though, it didn’t stop there. Several other upsetting situations cropped up, and it got to the point where I was actually laughing at how many ridiculous things had happened in such a short space of time. But because my resources were already low from dealing with the first lot of issues, I was finding it harder to find the spoons to deal with stuff effectively. And of course chronic illness is never a fan of stress so health problems soon joined the party. Increased disease activity in the form of weight loss, tremors, falls and pain were all now becoming sources of stress, as well as being caused by it.

I resolved as many of the situations as I could, and did my best to organise work and study to be more manageable. Unfortunately, none of this made as much of a difference as I would have liked. For a lot of the things I was dealing with, there weren’t simple solutions, and even when there were, my emotions were often still left raw afterwards. The worst thing though has been that my sleep disorder has been really out of control lately. Like REALLY out of control. I’ve had multiple nights where I’ve woken up screaming, and several times where I’ve injured myself, fallen or “blood pressured” myself trying to run away from night terrors. After having a particularly bad night where I fell several times and had to use my medical alarm, and then having an utterly hideous night terror which I couldn’t wake up from just a few night later, I’ve reached the point where I straight out feel afraid to sleep or even go to bed.

I’ve been feeling for the last couple of weeks like my life has just gotten too overwhelming, and I’ve been quietly reeling in panic trying to figure out what to do (naturally all while keeping up the outwardly calm on-top-of-everything appearance.) But then I realised, this isn’t about the upsetting situations anymore, nor is about work, study or any of the other things I’ve been attaching it to. At this point, I think I’m just stressed from being stressed. My fight or flight response has been triggered so many times recently, I’ve stopped allowing myself to relax in between and am constantly on high alert. My threshold for stress has also been lowered, so I’m getting triggered more easily anyway. The night terrors are a product of that, and the only way I’m going to be able to resolve them is to calm the f*ck down.

Of course that is easier said than done, but I have managed to find a few things that seem to be helping.I’m someone who tends to isolate myself when I’m feeling overwhelmed. I know this isn’t good for me, but I also just haven’t been feeling up to socialising all that much. I’ve been getting around this by making myself go to more shows, panel discussions, poetry readings and things like that – events where you don’t really have to talk to people, just go and listen. Of course Wellington being the type of place it is, just about everything I’ve gone to, I’ve run into at least one person I know and ended up talking to them, but that’s probably has been a good thing in and of itself.  I’ve also started going to weekly drop-in meditation classes, practicing relaxation exercises at home along with calming activities like knitting, and I’ve gone back to slow reading club. All things that help me relax and hopefully, with time, will start to calm my system and let it know it’s okay to let go of the flight or fight mode. In terms of the sleep, I’ve been trying strategies such as moving into my spare room instead of my own bed, and telling myself that I’m not going to sleep, just reading in bed so I don’t get as anxious about it.

I think the fact that I’ve realised this is about stress itself rather than any specific problem has helped a little in itself, as it’s stopped me trying to fix things that aren’t broken. At this point I can’t change any of what’s happened, I can only try to change my reactions to it. So for now, my sleep is still a problem. I’m still having vivid dreams and night terrors, and still scared of going to bed – it’s midnight and I’m writing this and talking to overseas friends online to avoid it! But I know that with time this will all settle down, I just have to not let it become another source of stress in the meantime.

Thanks for reading,

Little Miss Autoimmune

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

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,
Helen

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

Little Miss Autoimmune

Lupus: It's Not a Harry Potter Character.

The lovely Rachel from Fluted Cups & Ampersands wrote a post recently about how to talk to sick people. It's a pretty cool post, and really worth a read.

I've realised that I don't always know how to talk to "healthy people", and that is far more about me than it is about them. It's not because I think they're all that different from me, or that I think just because someone hasn't experienced chronic illness themselves they will automatically lack empathy. And it's not that I have nothing to talk about aside from health issues - there are a multitude of other things about me that are more interesting than my illnesses. It's just that all the things that happen to me are complicated in some way by my health. My anecdotes are often the type of stories that people don't know if they're allowed to laugh at, and sometimes a story I think is hilarious, will make people start pitying me, or worrying about my well-being. When people ask why I walk with a crutch, I just say I have lupus/autoimmune arthritis and leave the rest of it out to make it less complicated. But then sometimes that means I have to stop in the middle of saying something to explain about one of the million other illnesses, disorders and allergies I live with, because otherwise the story won't make sense. By the end of that, I've usually forgotten what I was trying to say in first place and the conversation has taken a bit of a depressing turn.

In a way it's really nice talking to people who don't know any of my medical history. Because then I can just be a person, and pretend the rest of it doesn't exist, at least for a little while anyway. But then when it gets to the point where I do need to start explaining, it just brings to my attention exactly how many things there are about me that are a bit left of centre. I was telling one of my friends that when I start thinking about all the things that aren't quite right with me, I realise I really should have been weeded out by evolution by now (again, the kind of comment that can make healthy people uncomfortable and chronically ill people crack up!)

So sometimes it's just easier to give up on trying to explain and start censoring my stories instead. For example, if I didn't know you that well, this is what I might tell you about my night last night:

I went to a play last night Second Afterlife. It's a clever play about a guy who wants to delete his facebook profile, but first has to enter the internet and confront the ghosts of his past online profiles. I enjoyed it a lot.

If I know you a little better, I might tell you this:

I went to a play last night Second Afterlife. It's a very clever play about a guy who wants to delete his facebook profile, but first has to enter the internet and confront the ghosts of his past online profiles. I enjoyed it a lot. On the bus home, a guy came and sat next to me and asked if he could pray for me to be healed. He was really nice, and while it didn't really influence me in any religious way, it did remind me of the kindness of strangers, which is always welcome. Then he asked me if lupus was a character from Harry Potter. That part made my day.

And, if I know you well enough to know you'll be okay with hearing it (or you read this blog) I'll tell you the whole story:

I went to a play last night Second Afterlife. It's a very clever play about a guy who wants to delete his facebook profile, but first has to enter the internet and confront the ghosts of his past online profiles. I enjoyed it a lot. On the bus home, a guy came and sat next to me and asked if he could pray for me to be healed. He was really nice, and while it didn't really influence me in any religious way, it did remind me of the kindness of strangers, which is always welcome. Then he asked me if lupus was a character from Harry Potter. That part made my day.

Then, while I was walking home from the bus, I started experiencing some really strong pain. I kept walking, because... well what else can you do? But walking got harder, I got dizzy and then I collapsed... about 100 meters from my front door. I lay there for a while, and it really sucked, but then I looked up, and I was lying under this beautiful tree and I could see the stars. Somehow that didn't feel so bad. Then it started to rain, and that made it suck again.

Obviously it all worked out okay in the end. I was still in one piece, and after a while I felt well enough to get up and walk the last 100m home. Therefore most people don't need to know about this, even if I think it's kind of funny. I can edit these parts of my life out if I don't feel like trying to explain them.  

I think the issue can be that sometimes when I do start telling people more, I worry that they will misinterpret why I'm telling them. I don't want them to end up feeling uncomfortable or think that I'm expecting them to help in some way. Generally when I do tell people about a fall, or something similar, what I want is for them to laugh with me about it (and maybe make a few sympathetic noises while I process what's happened.) 

Perhaps I need to stop thinking about it in terms of whether someone is a "healthy" person or not. After all, I'm not sure of the last time I met someone who didn't have at least one struggle they're dealing with. I just need to trust that if people know me well enough for me to be telling them the full story, they'll know me well enough to know they're allowed to laugh.  

Thanks for reading,
Little Miss Autoimmune

Things Writing Taught Me About Living with Chronic Illness (and vice versa)

I wrote my first novel manuscript "See No Evil" between the ages of 13 and 16. It is, by a number of people's accounts, one of the funniest novels ever written. It's just a pity it was supposed to be a psychological thriller not a comedy.

When I got really ill as a teenager, and had to leave school for a while, my mum suggested that I finish writing it and send it off to a local children's book competition. The entries were read blind, a fact I think worked mercifully in my favour, as I now cringe in embarrassment at what the judges must have thought reading it against the entries of adult, professional writers. That particular manuscript will probably never become anything other than a file on my computer, but I have since written others that will hopefully turn into "real" books at some point (with some luck and hard work.)

Writing all of them taught me several things, one of the most important being: you cannot write a novel in day. Even if you are an extraordinarily fast typist, or dictating your work, trying to write 50,000+ words in a day will leave you with crippling RSI or an MIA voice. Writing a novel has to be done in chunks, whether it's a little bit every day, or a little bit whenever time allows. I wrote that first novel primarily in the school holidays, so there were long gaps between picking it up and putting it down. Finishing it was a matter of not giving up, doing it a little bit at a time, even if it felt like it was taking forever.

These days, a lot of tasks take me a long time. When I have people coming over, I have to start cleaning up several days in advance because I can't do it all at once. And no, my apartment isn't excessively dirty or untidy! Making soup is a three day process - Day One: Chop onions, celery and other fresh vegetables. Day two, boil them in stock, along with any canned or frozen additions. Day Three: Puree, and you finally have soup. There used to be a fourth day - strain the soup before serving, but then I realised life is short and I'm not on an episode of Master Chef (plus I tell myself the stringy bits are extra fibre.) I'm often asked "Can you do stairs?" and the answer is "Yes, it's just takes a while." The same goes for getting in and out of cars.

The thing is, none of these tasks would get done if I didn't start. Nor would they get done if I gave up in "chapter one." Sometimes you have no option but to keep going - there's no alternative but to keep climbing when you’re halfway up a staircase - but sometimes you do have the choice to give up on tasks, and the motivation to keep going has to come from you. As tempting as it may be to try and do everything all in one go, it's just not going to happen when you're ill. Even if you manage to push yourself enough to complete the original task, you're going to screw the rest of your week up by making yourself too tired to do anything useful the next day. Writing has taught me the patience to pace myself. Or perhaps chronic illness has given me the patience to write.

Another thing writing has taught me is that there doesn't always have to be a tangible reward for the things you do. Ask the majority of writers if they make enough money to live on, and the answer will be no. Ask them why they still want to write, and they'll stare at you with a vaguely perplexed look indicating the idiocy of the question and answer something along the lines of "How can I not?" The writing itself is what drives most writers, not the possibility of monetary success (though I bet they'd all say a bit of that would be nice too.)

I've made some money from writing and associated work. Not a lot, not even a medium amount, just some. But that's never been a reason not to do it.

I don't know if I will ever be well enough to be able to work enough hours in a week to support myself financially - in any job, not just writing. I do know that I need to work at least a few hours a week, and spend at least a few hours writing, to keep myself sane. The monetary rewards from those hours are not a lot. But the intangible rewards are priceless.

Finally, you don't have to know what's going to happen for things to work out okay. Each time I've sat down to write a novel, I've had an idea of a few scenes that I want to include before I get to the end, but haven't had a clear idea of how to fill in the blanks in between them. Invariably, I've ended up writing other scenes that turned out better than the ones I originally had in my head, writing thousands of words of rubbish that made no sense and had to be deleted later, and followed plot bunnies for pages at a time in the hopes that they'd lead me somewhere useful. At the end of it, I've either finished a "manuscript" or written a "something that will never see the light of day, but taught me some lessons anyway."

I don't know what's going to happen with my health. Not just long term; most of the time I don't even know what's going to happen with my health in the next couple of hours. But so far it's all worked out okay anyway. I'm hopeful that things are going to continue to work out okay, even if my story is turning out to be something quite different to the one I thought I was living originally.

Thanks for reading,

Little Miss Autoimmune.

Forgetting You're Sick



Me and Rebecca having High Tea
(photo taken by our other lovely friend Andrea)

My lovely friend Rebecca from In My Body and I were talking on Facebook chat the other day (at 2am – neither of us could sleep) and this is part of the conversation we were having:

Me: Do you ever feel like sometimes you are so busy being sick, and managing living being sick, that it's almost like you forget you're sick until there is something... (usually something quite small) that you're irritated about not being able to do. And when you're sitting there being irritated about not being able to do it, you suddenly remember all the other things you can't do and it's like you're "remembering" that you're sick?

This was something that I felt very odd about saying. It sounds so stupid to say that I forget that I'm sick when it's a constant and ever present factor in my life. There was a part of me that wondered if Rebecca was going to come back with a comment like "Uh, no. Not really." But this was her reply:

Rebecca: I hear you! I sometimes also get this thing were I have been sitting still and I'm not in much pain and there is energy (or maybe it's motivation) in me to get up and do something and so I get up and go to do something and it's really hard to do and I'm like 'What's wrong with me? I'm so unless at this' and then I remember I'm sick.

It was such a relief to realize that someone else felt the same way I did. We went on to talk about the fact that we both have dreams where we are not sick, but are still experiencing pain. Our dreaming brains have invented monsters, attackers, insects and (really unprofessional) surgeries to explain the sensation of pain without having to admit to ourselves that we’re living with chronic illness and disability. Similarly, I often wake up in the morning and panic because I can’t move. My brain strays to thoughts of strokes or paralysis before I finally remember that this happens every morning. My joints are just stiff, not paralyzed, and will eventually start moving again once I calm down. 

But yet, it’s still so easy to forget it all in the in-between moments. We’re forever healthy people trapped inside sick people’s bodies.

Sometimes I think living with a chronic illness is like a prolonged grieving process. You lose the ability to do something or develop a new symptom, grieve about it for a while, learn to adapt find and that life is not so bad, forget about it for a while, then remember it and start the process again.

While of course I would never wish for anyone else to be in pain or experience the frustration of forgetting/grieving about it, it was almost exciting to realize that Rebecca felt the same. And that’s why I'm sharing this here. If you’re busy swinging around on the roundabout of repeatedly “forgetting” and “remembering” that you’re sick, try and also remember that you’re not alone. There’s a least two of us that feel exactly the same.

Thanks for reading
Little Miss Autoimmune