Tuesday, December 29, 2015


Bridge crossing over the motorway
The suburb I live in straddles both sides of the motorway, and as such has a number of bridges which cross over the top of it. I've always been afraid of walking across these. I can remember panicking halfway across when I was a child, and my mum having to coax me the rest of the way. The height combined with the cars whizzing past underneath was just too much for me. This wasn't such a problem when I lived in a neighbouring suburb, and the need for me to walk routes involving these streets was rare, but where I currently live it's meant taking the long way around or having to psych myself up in advance to get across. 

A number of months ago, I set myself a goal to overcome this fear. I didn't approach this with any specific plan, just started walking routes that took me across the bridges in the hopes that doing it more often would make me feel more relaxed about it. Then, life got a bit stressful, and... well, I kind of forgot about this goal. 

View of the motorway from the bridge
A few weeks ago when I was out walking one evening, I paused looking out over the motorway... and after a bit I realised I wasn't afraid. Though I'd forgotten my goal to get over my fear of walking over the bridges, I'd unconsciously continued to walk routes taking me across them. At some point, without me realising, the fear had dissipated.

Progress often seems to be like this. In the past I have had miracle moments of responding to a treatment overnight, regaining wellness and function, but for the most part it's slow incremental gains that I don't even notice as they're happening. It's sometimes not even until I slide back a bit that I notice how good things have been. A few months ago I had to skip some of my meds for a few weeks, due to infections/antibiotics, and the resulting psoriasis and joint flare made me conscious of just how well the meds have been controlling my symptoms. Just recently I ate dairy for the first time in about nine months, and ended up very unwell and lying on the bathroom floor for the night. I realised that since I've changed my diet, I've only had one or two really bad times with my stomach and weight loss problems. While both the flare and the night spent on the bathroom floor were incredibly unpleasant, it was reassuring to know I am on the right path with my the way I'm managing my diseases (and also made me more motivated to stay on track with the diet stuff!)

While some things with my health have gotten worse, and I've had some rough times this year, overall it does seem to be stablising and - dare I say it - maybe even improving? (yes I'm knocking on my wooden coffee table right now.) Physical health aside, I can say that with New Years' Eve just a couple of days away I am leaving 2015 with less anxiety issues and more confidence than I had at the start of the year. I'm not really one for making resolutions, but perhaps my goal for next year will not be to try and change or improve anything, but just to notice the good things that are already happening.

Thanks for reading,
Little Miss Autoimmune

Sunday, December 13, 2015

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.

Friday, December 4, 2015

Communication - to tell or not to tell

I was sitting on the bus the other day, and as we got close to my stop I put on my gloves, ready for the change in temperature when I got off the bus. A woman sitting near me started laughing and asked incredulously “Are you actually cold?!” No, I was not cold. I was overheating, in fact, but unfortunately Raynaud’s can still react to temperature changes in summer, even if you are generally feeling warm. I told the woman I have Raynaud’s disease then, when she looked blank, gave her a brief explanation. She stopped laughing, her face changed to a mix of embarrassment and pity, and I started to wish I’d just said “yes, I’m cold.”

I have a lot of these kinds of interactions with people. There’s always an internal debate for me about whether to explain my health problems (and if so how much to tell) or whether to steer conversations in the other direction. During summer, I spend a lot of my time blindly agreeing with people in discussions about the weather:
“Aren’t you glad it’s sunny?”
No, I’m covered in hives from sun-sensitivity, I’m overheating from having to wear longs sleeves, and I think I just got sunburnt through two layers of clothing and 50+ sunscreen. Yes, it’s lovely, isn’t it?”
because it’s easier than explaining lupus to the many many people using the sun as a conversation opener.

For the most part, I try to be open about my health issues, where it’s appropriate. Sometimes I probably overshare, though there are also times when I actively avoid being honest about what’s going on, even with people I’m close to. Earlier this year, my pain levels began to increase as my joint symptoms became more active, and I also began to experience more allodynia-type pain as a result of not sleeping and the stress that was causing. For quite a while, I didn’t tell anyone about this, even my friends from pain clinic. Initially this was because I thought the pain might go away on its own, but when that didn’t happen, I didn’t want to tell anyone because then I would have to acknowledge that it was really happening. I was also worried that if people found out they would react by trying to hug me, which is the last thing you want when you’re in a lot of pain! As is turns out, the first person I told did in fact go to hug me straight away, but that ended up being a good thing as I found out that this time around physical contact isn’t anywhere near as painful as I’d remembered it being. Discovering this reduced some of my distress around the situation, so while I am still experiencing heightened pain on and off, it’s not making me feel as lonely or isolated as it did at the start. In this instance keeping the issue to myself had not been sparing me any emotional or physical pain, but instead increasing it.

I was talking to a friend about some of this the other day, and they brought up the idea that when you have big health stuff happening, it’s sometimes nice to have that one person in your life who doesn’t know what’s going on because then you can just feel normal with them. A few months ago when I had a tough situation going on, a friend from oversea made a joke that, given the circumstances (which he of course didn’t know about) was amazingly inappropriate. That actually made it just that much funnier to me, and the resulting hysterical laughter was exactly what I needed. When people don’t know what’s going on, they won’t hold you by the edges, treat you as fragile, or push you to deal with problems when you’re not yet ready to. Instead they will just carry on as if nothing has happened because as far as they know nothing has. This can make conversations with them feel safe and easy, however on the flip side of that, after a while not telling people can create a sense of disconnection in your interactions, as it’s like trying to talk to them through an elephant enclosure. They may treat you as if you’re normal, but if you don’t actually feel like you are that “normal” person anymore, the relationships can start to feel fake as if you are playing pretend rather than being authentic with them. One approach I have found that seems to strike a balance between the two, is to let people know that something is going on but also let them know that I’d rather keep the conversation light. For example saying something along the lines of “Yes, things are really tough at the moment, but I’ll figure it out” feels honest, but also stays in that easy comfortable zone. If I know the person well, I’ll even just answer “how are you?” with “meh” and then change the subject, as this removes the need to lie and say everything is fine, but also still avoids getting bogged down in.

After writing all this down, I don’t think I’ve come to any conclusions about which is the best course of action – to tell or not to tell – other than to say that finding the balance of how much to share and when is really difficult, whether it’s with strangers or with friends. Over time I’ve learned to recognise when the level of openness in a relationship doesn’t feel right anymore and to make an effort to try change that, either by sharing less or finding ways to be more honest (or at least not to lie and say everything is fine.)

Thanks for reading,
Little Miss Autoimmune

P.S. Believe it or not, when I sat down and started writing this was supposed to be an update about what happened at the sleep-specialist appointment, but I got a bit side tracked. I’ll post an update about that soon… probably…