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

So Many Sleep Disorders

After posting about my fears leading up to my sleep specialist appointment, my intention had been to post soon after with the “results” but this didn’t happen. I was struggling against the sleep-deprived exhaustion that led me to this appointment in the first place, and like most teachers/tutors out there I was just trying to make it through to the end of the school term (I made it – yay!) I’ve also been working through the fact that I don’t entirely know how I feel about it all. Writing this blog gives me an outlet for my emotions, and helps me process them, but it’s not so great when I don’t really know what I’m feeling or how to articulate any of it. While the news from the specialist wasn’t devastating, it wasn’t the magical cure I was secretly hoping for either and about half the things on my list of fears did happen.

The result was (of course) I’m “complicated”. I guess I would have been shocked if it was anything else really. He felt fairly certain that I have Delayed Sleep Phase Syndrome, but this only explains why I struggle to get to sleep, and have natural sleep and wake times that are out of sync with the rest of the world. When it comes to the waking dreams, “sleep walking” and screaming in my sleep, there are elements of three different sleep disorders (REM Behaviour Disorder, Confusion Arousal, and Hypnogogic Hallucinations) but there are also aspects that are inconsistent with each of these. With REM Behaviour Disorder, patients remember nothing of the episodes, or have only very vague memories, whereas my memory of what happened is usually clear and often very detailed. Confusion Arousal episodes don’t involve the level of dream elements I’m experiencing, and patients usually just go back to sleep without too much disruption. What I’m experiencing seems most like Hypnogogic Hallucinations (this is the disorder I originally thought I had), however people who experience this are paralyzed during episodes, which I am obviously not, given my penchant for running around and injuring myself!

So at this stage, the specialist is not able to rule any of these disorders out, nor confirm a diagnosis. For now I’m calling it “mystery parasomnia” (which I think is fitting because it sounds like something you would find in a haunted house, and that’s what the experience is rather like.) He’s referred me on to do a sleep-study, to try get a clearer picture. Sleep studies often don’t yield results, as if patients are only having sleep disturbances once every few weeks, it can be hard to guess at which night they’ll be able to observe something, and besides which, being in a different environment can alter sleep patterns anyway. In my case, I have some form of these sleep disturbances happening most nights, so hopefully they will be able to catch something. The sleep-study may not change anything, but being able to put a name to this, and being exactly sure of what’s going on, may help my peace of mind, even if nothing else.

In terms of treatment, there aren’t any medication options for me - most sleeping tablets actually increase these types of episodes (I’ve experienced this first hand!) The ones that don’t instead have various significant risks associated with them, and so are usually only prescribed in extreme cases, such as when someone has become a danger to their partner by attacking them in their sleep (the specialist told me a few stories about that!) Instead, he has suggested a very strict sleep routine* which limits sleep opportunities, along with late night and early morning routines to try increase production of the right hormones at the right times. The hope is that with time, this will help manage the Delayed Sleep Phase Syndrome, and possibly decrease some of the other sleep events as well. However, while I’m in the initial stages of following this (I haven’t started yet, as I’m still waiting for the sleep study appointment) it’s likely that I’ll actually get less sleep until my body adjusts, which is a worrying prospect. It’s worth trying, but it may mean some rough times while I work through that.

One reassuring thing that came out of the appointment was that the specialist confirmed my theory that I don’t have depression, this is just a symptom of the lack of sleep. This makes sense, as I go from a happy and (reasonably) confident person, to feeling completely awful and worthless within the space of a few days when I am going through a bad sleep cycle. While that doesn’t change how bad it feels when I’m in that space, it is at least been something to hold on to, as I can remind myself that once I manage to get a few days good sleep, I will begin to feel better again. When I’m in the middle of that, it’s hard to believe it, but I’ve been through this enough times now to know that is just part of the process.

Thanks for reading,
Little Miss Autoimmune


* I’m not going to post the details here, as this is something that’s been recommended for my particular situation, and I don’t want this to be used as medical advice where it may not be the right fit.