It's all going to be okay, I promise

This post is unashamedly for me. You can read it if you'd like to, and if you get something out of it then that's awesome, but if you're bored to tears and think it's a self-indulgent piece of nonsense... well, you were warned and kept reading anyway. :-)

When I last posted, I thought that yes, things had been bad but that they were now turning a corner. Well, it turned out things could get worse. I'm doing a lot better now, and I'll update about the medical/sleep disorder side of this at some point, but for now I'm just going to talk about the emotional side of this.

It is hard to be positive when crap things are happening to you.
It is hard to have good self esteem, when there are a lot of things that are wrong with you.
It is hard to believe that things will work out okay, when they keep getting worse.
It's hard to keep a sense of humour, and equally hard not to turn humour into a defense mechanism.
It's hard not to feel angry, and it's hard not to direct that anger towards yourself.
It's hard not to feel guilty for all of the above when you know other people have it a lot worse.
And it is hard not to feel that you are to blame for all of the above, because every inspirational quote you've ever heard tells you, it's not the situation that's the problem, it's your reaction to it.

You know what? Sometimes it's the situation. Sometimes life just keeps on kicking, and yes at some point you've got to take responsibility, take control of the things you can influence, and dig your way out. But before you get to the amazingly strong kick-ass point of fighting back against what life has thrown at you, it's okay to acknowledge that you don't actually want to have to fight. It's okay to acknowledge that yes, you are amazingly strong and brave and awesome, but it would be nice if your life didn't require so much strength and bravery. It would be nice if your life would stay on track even if you feel cowardly once in a while. 

Now I hesitated over writing that second point on this list, because I could hear the chorus of voices objecting to me using the word "wrong". But remember, this post is for me, not anyone else. There are things wrong with me, there is no denying that. There are parts of me that straight out don't work. I have a lot of other things going for me, but that does not negate the fact that there are also a lot of things working against me. I'm putting this out there, because I've come to realise that I have self esteem issues about the fact that I have self esteem issues. Why? Because when I express the fact that I don't feel good about myself, it is generally met with confusion and sometimes anger. When I am well, I can understand this. I can see logically that I have a lot of things going for me, and I can see that the "wrong" things do not take away from that. But when I am not well, I am so exhausted from fighting those wrong things that I cannot see beyond them. They are bigger than the edges of me and it does not feel like there is anything left around that.

To put it simply, Well-me realises she's fricken awesome. Not-well-me is so exhausted and broken down she struggles not to hate herself, and unfortunately Not-well-me tends to get more air time.

I am fond of making my friends promises that on the surface, I have no power to keep. Not promises of favours, but just promises that everything will work out okay. I'm not really sure what my friends think about this. For some of them it probably just makes them laugh, but for others I think it really does offer them some reassurance, because when I make those promises, I truly believe that it will happen. I truly believe that everything will be okay for them, and I give them every scrap of positive energy in me to help make that happen. This may all sound a bit like wu wu heebee jeebees, but, once again, this post is for me, and I'm okay with the fact that some of my beliefs are left of centre.

Yesterday I had this moment of feeling good, and like I had it all under control. In that moment I realised that it was all going to be okay, no matter what happened, in the same way that I know things will work out for my friends. This was a really wonderful feeling but I knew that I might not be able to hold on to it the next time things got hard. So I wrote myself a reminder:

Last night was another screaming-at-3am, injuring-myself-in-the-process, night-terrors type night. I woke this morning tired, sore and feeling unsettled especially as the night terror had related to a real-life thing that happened recently. But when I saw the note waiting for me, I knew that it was going to be okay, because Well-me had my back. And she's pretty awesome.

I'm not always going to be able to hold on to feeling good, especially when my spoons are depleted by lack of sleep or other health issues. But I'm going to do my best to try, and if all else fails I'll just rely on Well-me to remember for me.

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

Body Image Part... I don't even know anymore

Photo credit Travis Cottreau from Poetry in Motion

Last year I posted over on the Little Miss Autoimmune Facebook page about how starting a new medication had helped me get some control over my stomach issues, and as a result I’d been able to regain a kilo and keep it on for a couple of weeks. This seemed (at the time) to signify my stomach problems were a thing of the past.

Well, that’s the problem with counting milestones when it comes to chronic illness. There’s no end point to these diseases, and as such everything is changeable. The good and bad states are only ever temporary… a fact that can be both a source of comfort and a source of fear if you let it. Not long after posting about that kilo weight gain, I re-lost it… and five others.

Despite this, last week I realised I’d come to a good place with my body image. I felt like how I saw myself in my mind was starting to match up with what I saw in the mirror and in photos, rather than my real image being a constant surprise after all the changes my body has been through. More than that, I actually felt I liked the way I looked – when a friend complimented me on a photo someone had posted, I could think “yeah, that is a nice photo” rather than immediately assuming they were saying that to make me feel better about what must actually be a bad photo.

Then in the way of life: Happy with your body image? Enter chronic illness.

Since that photo was taken, I’ve lost three kilos – enough weight that I’m going to need to get a belt for my jeans to avoid accidental indecent exposure. It was only a week ago. The day this photo was taken, I’d seen my doctor about something unrelated and happened to mention that I thought I was losing weight again, so she got me on the scales. In the week since, things went from “I think I might be losing weight” to “I’m so sick I must have food poisoning” to “how can food poisoning last this long…? oh wait, it’s a fricken' flare.” I hate that after all the years, medication, attempts at alternative therapies and diets, this is still happening. I hate that it happened the moment I started to feel good about myself, and I hate that I still feel like I’m going to have to justify to people why this isn’t a good thing.

Maybe that last part is in my head. The people I’ve mentioned the weight loss to, all reacted with variations of “oh, that’s not good” so perhaps people won’t assume weight loss at any cost is a good thing (or perhaps I just have all my friends well trained!)

I hope that I can continue to feel good about myself, even if my body changes again. The weight loss this time probably isn’t significant enough for me to actually look any different, however, the last couple of days my thought process has been something like this: “Maybe I should try eat more, so I don’t lose too much weight. But what if I over-shoot and start gaining weight? Really Helen? Are you actually worried about that right now? But if I lose too much weight, I’ll probably look really weird. Wait… Are you actually thinking this? Are you really simultaneously fat and skinny shaming yourself, while buying into superficial garbage about your appearance instead of concentrating on your health? What is the matter with you?!”

The reality is, I cannot control my weight right now. All I can do is eat whatever doesn’t make me feel sick, avoid foods which I know make the weight loss worse, and just hope that at least some of what goes into my stomach actually gets absorbed. Like all the illness stuff, this episode will be temporary. There’s a really good chance the weight I’ve lost will come back on once my stomach settles, and I’ll be back to where I was. I just hope that whatever happens I can feel okay about it and stop placing so much importance on a number on a scale. Weight gain or weight loss, I know very well that if this was happening to a friend, I would be assuring them that they are worth so much more than that, so I’m going to try show myself that same kindness.

Thanks for reading, 
Little Miss Autoimmune

Sometime it's okay to stop (Life is about snapshots not oil paintings)

When I stopped blogging last year, I'll admit that there was a part of me that thought it was somehow going to cure me, that I would wake up the next morning illness-free, full of energy and ready to take on the world.

Yeah... nah.

My health continued to be as bung as it always had been. I also still struggled with all the feelings about my illnesses that had led me to decide to stop blogging in the first place, but I did at least start to make some headway with understanding what those feelings were really about and identifying them, even if I couldn't always change them. One of the big things that did change for me was my willingness to try new things, and make plans for the future. Once I started taking more notice of my own thoughts, I realised how much I was stopping myself from doing because of the way I felt about my illnesses rather than because of the illnesses themselves.

When I went through the pain clinic programme a few years back, one of my exit goals was to go back to dance classes. Now admittedly, my health has done all sorts of strange things in the time since pain clinic that would have made dancing difficult, but I was also hampered by the idea that I would cause disruption or embarrass myself in classes by being being sick/fainting/my legs stopping working suddenly (or any of the other things that can happen on a daily basis) or just generally not being able to keep up in the same way I could in dance classes I attended pre-illness.

Realistically, if my body did decide to have a tantrum and stop working properly, yes, it would cause some disruption to the class, but the impact of that on other people was probably not going to be as bad as I imagined. Even if it went utterly and completely wrong, it would still only be one hour of my, the other students', and the dance teacher's lives, so in the end, I decided to just get over myself and try a class. I gave the teacher a heads up in an email and at the start of the class that there was the possibility of me falling/fainting/other bung things, and she was fine with me taking it at my own pace or sitting out if I needed to.

It turned out the biggest issue for me was that after ten years without attending classes, I was completely out of practise at learning choreography and spent most of the first class facing the wrong direction. That came back pretty quickly though, and I began to really enjoy going to classes. It became a fun, and stress-relieving part of my week.

However, it hasn't been completely without problems. Fatigue, muscle spasms and pain are not exactly the most compatible things with dance, and some weeks I've been completely wiped out by classes. At the end of last term, I was really struggling to keep going. Work and other commitments were using up most of my spoons, and finding enough to dance on top of that was hard. This term my work schedule is even more demanding, and I've known the sensible thing to do would be to take a break. But the thought of stopping classes really pained me.

This was something I fought for - emotionally and physically - and something I had won back against illness. I wanted to cling to that, and not let go. I felt I had to keep going - not just at dance classes, but with everything - because if I gave in, it might mean losing those things again forever. So I pushed myself to keep up with everything... and of course my health started to bear the effects of that. Continuing to do something because I am afraid of losing it is probably not all that much better than me being afraid to even try it in the first place.

A friend sent me this song the other day:

This situation wasn't the reason she sent me it to me (we'd been talking about taking photos) but it felt like it fit pretty well anyway. I went back to classes. I danced my ass off. I fricken loved it. Here is the polaroid picture to prove it...

(I'm on the far right in the pink singlet.)

...and right now, it's okay for me to stop. I may go back to classes again - I stopped for ten years and went back - or I might not. But either way, it's still fricken awesome that I got to do this again after so many years. Letting go of this does not make it any less cool that it happened, and letting go right now does not mean "never again." Sometimes, it's okay to just say "I'm pressing pause."

Thanks for reading,
Little Miss Autoimmune

Catching Reapers and Sleep Disorders

If you're friends with me on Facebook, you will have seen I've been posting a ridiculous amount of stuff about Grim Reapers lately. That's because my play How to Catch a Grim Reaper opens tonight at Bats Theatre. Being involved with the Young and Hungry season this year has been a really special experience for me. Theatre, and in particular Young and Hungry, were a big part of my life pre-illness, and I had thought that part of my life was over. 

As part of the publicity for the play, I was taking part in a publicity stunt wandering around town with a Grim Reaper. It was kind of a bad day pain-wise, and I was a little worried I might pass out because of it, so I gave the people I was with a quick explanation of my tendencies to fall down - very important in this case, since I often don't recognise people and freak out after I pass out, and so waking up to this:

leaning over me would not have ended well. While we were joking about the idea of the reaper setting up road cones and a "Grim Reaper at work" sign around me if I did pass out, it suddenly occurred to me that when I was saying Young and Hungry was a part of my life pre-illness, there was only a very slim margin making that true. The first time I collapsed was on a Young and Hungry holiday programme when I was fourteen. A couple of days later I collapsed again on the stage at Bats, and that was about when I realised I might not be all that well. It was another five years before I got a diagnosis and in reality I had been unwell for several years before that without knowing, but that day has always stuck in my mind as the beginning of a lot of this stuff.

One of the articles about the show focused on my sleep disorder (hypnogogic hallucinations or night terrors - not autoimmune as far as I know) being the inspiration for the play. During the interview, Tom asked me if I had the choice, would I give up having the sleep disorder as it has given a lot of creative inspiration. The question gave me pause - the sleep disorder can be exhausting and disruptive at times, but it has had a major impact on my writing, so no, I probably wouldn't give it up.

It made me think - would I give up any of the illnesses I live with if I had the choice? 

Yes, of course I would! If a safe and effective cure was found, I would be lining up to take it, especially if it could reverse the damage already done to my body. But if the possibility arose that I could never have been sick in the first place, would I take that? 

No. I don't think I would. A lot of living with illness has sucked, but ultimately it has led me to where I am now. I love my life, and the people in it, and I wouldn't risk giving that up. 

Of course this is all very much theoretical as the likelihood of someone developing cures for all my illnesses AND inventing a time machine to go back in time and give it to me before I became unwell is pretty low, but even so, this has been a nice thought train to jump on for the day. My illnesses have changed my life a lot, but I'm not convinced it's all for the worse.

Thanks for Reading
Little Miss Autoimmune

How to Catch a Grim Reaper runs from the 10th-25th July at Bats in Wellington. Find tickets.