She Chose Down

A couple of months ago, whenever anyone asked me how I was, I sent them this video.

I think most people were just confused by this, but at the time I felt it was the best explanation I could give for what I was feeling. Labyrinth is one of my favourite movies, and I've written before about some of the meaning I think can be drawn from re-watching Labyrinth as an adult. As a child I never realised that in this scene, Sarah actually answers the riddle correctly. Yet she still falls through the floor a moment later.

I screwed things up this year. I made a choice - seemingly the right choice - but things went badly. Then I made another choice, although this time it really was the wrong one, and I ended up in a massive dark hole. This is the unfortunate reality with chronic illness. You can do your research, listen to expert advice, weigh up your options… but there are still no guarantees.

A few months ago, after my sleep study provided a whole bunch of inconclusive results, I decided to trial a drug-free treatment option to help with my sleep problems. It seemed like a safe option - it's been shown in clinical trials to be more effective than medication at treating insomnia, and it was recommended by my specialist. Sounds like the right choice, yes? Unfortunately no. Not only did it not help with my parasomnia, it actually increased it, and the resulting lack of sleep caused a significant flare of my autoimmune disorders. So I made another choice, medication this time, and while it did improve the parasomnia symptoms a little, it also had a significantly detrimental effect on my physical and mental wellbeing. I ended up in more pain than I've been in since... well, probably since I very first got ill. I went from doing weekly dance classes to struggling to walk to the bathroom, and I experienced far darker places with anxiety and depression than I care to revisit. Luckily my doctor was on to it, and recognised that the medication had become dangerous for me. I couldn’t stop it immediately, but she gave me instructions on how to taper it off safely. In the middle of all this, my blood work also revealed an unrelated medical condition, which fortunately was treatable but caused some neurological symptoms and added to the depression in the meantime.

So with all that going on, you would have thought I’d have stopped the drug-free treatment as well right? Well… no.

The choices I’d made had gone so horribly wrong, I found myself stuck in a decision paralysis. Everyone – my doctor, my family, my friends, even my own body were telling me I needed to stop the treatment programme, and just do whatever I could to get sleep and recover, but I was so terrified of making yet another bad choice, I kept going with it. I also knew I needed steroids to get the autoimmune stuff under control, but weighing up the positives vs the likely side-effect of insomnia seemed too hard a decision to make. 

My doctor was on sudden and indefinite leave, which meant there wasn’t anyone there to step in and tell me what to do. So I did nothing. I sat back and watched myself get sicker, because it seemed safer than making yet another bad decision. This of course ignored the fact that avoiding making a decision is a decision in and of itself. 

Sticking my head in the sand was not my most grown-up response, and after a few weeks of freaking out and crying lots I had to push my fear aside, make some choices and try get my life back on track. I was lucky this time. Stopping the treatment programme helped immensely, and in a bizarre turn of events, the steroids actually made me sleep for nine hours straight instead of the more common side effect of insomnia. 

I went through cycles of guilt, regret, blame and anger over what happened. Was it stupid of me to continue with treatments that were clearly making me sicker? Yes. Do I wish I'd never made the choices I did? Yes. Is that going to change anything…? No. It was incredibly frustrating and sad to find myself in the position of watching my health decline, but I learnt something from this. I've always been afraid of what would happen if my joint pain was to become really active again, or if my teenage depression and anxiety were to return. And well... I've discovered that the answer is that it's pretty awful. But I’m not the person I was as a teenager, nor am I the person I was 12 years ago when my physical health problems first got bad. 

I found reserves of strength within myself that I didn't know I had. As utterly horrible as things were, I found ways to keep going even when giving up felt like a much preferable option. When I wasn't sure if I could keep going, I reached out for help and my incredible friends and family reached back. They were there, supporting me - in person, with texts and phone calls, or messages from the other side of the world – through even the worst moments. 

I've read that when Jim Henson, creator of Labyrinth was asked why Sarah falls through the floor after getting the riddle correct, he admitted he didn't know. Before falling, Sarah does say "It's a piece of cake" and there’s a pattern of bad things happening in the Labyrinth whenever someone says this, but other than that there’s no logic to it and it's not fair. I don't know why treatments that were supposed to be safe went so badly wrong for me. When you have multiple medical conditions there's more chance for negative interactions, but other than there's not really a reason. To quote Sarah again "It's not fair, but that's just the way it is."

My doctor is now back and I have a sleep specialist appointment coming up, so I will likely have to make some decisions about treatments soon. At the moment I’m still in the stage of wanting to reject everything, hoping to avoid making the wrong choice again, but I'm aware that didn’t exactly work out that well for me last time. Not seeking further treatment could be as detrimental as this whole episode has been, and these are things that I'm going to have to weigh up, all the while knowing that it's entirely possible that I may again make the wrong choice. 

I've come to realise that fear of what's happened in the past is not worth ruminating on, because I’m not the same me, and it will never be the same set of circumstances again. I'm still not be back to where I was before all this happened but I’ve learnt things along the way and I’m hopeful that my health will continue to improve. It's not fair that I have to make these kinds of choices, but I can either fixate on resenting that and the bad of what's happened, or I can hope for the best, and know that I will most likely survive the worst. 

You never know, maybe this time I'll choose up.

Thanks for reading,
Little Miss Autoimmune

I'm doing a happy dance!

I had an eye appointment today – the result: there’s no inflammation in my eyes, no sign of problems being caused by medications, and while my left eye is still quite dry, my right eye is fine. Even better, my vision has improved and my eye muscle control is back within the normal range. Yay! It was so nice to go to see a medical professional, and have them tell me things were good!

Things have been better lately, in general. My new medication combination kicked in about a month ago. To be honest, I’d kind of given up hope that this would work. I knew it would take a while for the new med to start working, but when it had got to three then four and five months on it, and I was still getting worse rather than better, I figured it just wasn’t going to happen. Around the six month mark, I started to notice some improvements.

For most of this year, things have been pretty shaky (no pun intended) in terms of my health. There were days, weeks sometimes, where the tremors were so bad I couldn’t get around the house unassisted, and even when my limbs weren’t actively shaking I still felt pretty unsteady on my feet. There was more than one occasion where I lay on the floor, unable to get up after falling, and many times where I got stuck on the couch because my legs had gone numb and I couldn’t stand. There have been many days where I couldn’t leave the house because my guts were too messed up, and many, many days where one nap just wasn’t enough. There’ve been days where my eyes have been too blurry to do anything useful, and days my speech has got so slurry and word-salady it’s hard for people to understand me.

Things are by no means perfect now. My bad days are still pretty bad – still plenty of shaky legs, messed-up guts, word-salad and nap-taking – but on the good days I feel far closer to normal than I have in months. And there are far more good days than there used to be too.

On Monday I did a yoga class. It wasn’t entirely a success – my shoulder has been hot and inflamed since, and a few of my other joints are complaining loudly, but I did the whole class! That’s a long way from not being able to get off the couch. As I walked home from the class – yes, I even walked to and from the class, which would be FAR more impressive if it wasn’t in the building next to mine – this song came on my ipod. I think that was the universe’s way of reminding me to reflect and be thankful for how far I’ve come. Thanks Universe!  

Thanks for reading

Little Miss Autoimmune

I get a stomach ulcer and positivity goes out the window...

Well, it's all pretty much there in the title. I found out yesterday I have a stomach ulcer.

I've had symptoms for a few months, but didn't really take much notice. I had a persistent stomach ache, but I put that down to being anxious, or having indigestion, or being hungry (despite the fact that eating made the pain worse.) It wasn't really a problem until about a week ago when the pain became unbearable and I had times where I couldn't stop dry wretching.

It was probably unfortunate that I had blogged about positivity a few days before, because I did not feel very positive at that point. Fortunately for everyone else, I lost my voice on the same day, so I was not terribly vocal about my lack of positivity. A wee bit of it did come out via the internet though.

Oh, that reminds me... I've found this great fibro group on facebook. http://www.facebook.com/#!/pages/The-Fibromyalgia-Fun-House/153222891381838
I don't know how to do that thing where you put the name of something, and that's the link itself, but this should hopefully work. They've been really lovely to talk to, and gave me some great advice, so thank you to them.
Oh, and while we're on the facebook thing, I now have a Little Miss Autoimmune facebook page. There's a link to it above... or maybe to the left... I'm not sure where exactly it's going to be in relation to this post, but I've sure you'll be able to find it if you'd like to.

So, anyway, back to my point. I have a stomach ulcer. It's not as serious as it could be because there's no signs of it bleeding, so that's really good. Unfortunately, it's most likely caused by my arthritis medication, which may mean I will have to come off it. I'm hoping not, as I can't really move without it. The doctor said the medication he's given me to repair the damage can also protect from further damage, so I may just have to stay on it long term. From what I've read, autoimmune arthritis itself can be a contributing factor, but I read that on the internet so I don't know if it's accurate.

It's weird, because I when the pain got bad last week I jokingly said I thought I was developing an ulcer. Then I googled the symptoms and causes and went, hey, maybe I am actually developing an ulcer.

As you might have guessed, this isn't really a proper post. It's kind of just an update to explain why I'm not doing a proper post this week.

Back to regular programming next week.

:-) Little Miss Autoimmune