Progress

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. 

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
    

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.

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…

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.

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