Wednesday, June 1, 2016

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

Wednesday, March 9, 2016

Dear Polly, thanks, but my life isn’t shitty

People have a lot of misconceptions about disabilities, and I understand why – the word spans a huge spectrum of life experiences. But one of the biggest misconceptions, which I can’t really get past, is the idea that our lives are automatically bad or pitiable.

When you find out that someone has a disability, all you know is that some part of them does not work in the same way it does in able-bodied people. You would probably be right in assuming that some aspects of their life are harder than they are for other people, but beyond that you can’t know anything about their intelligence, happiness, or level of achievement. There are probably disabled people out there who are happier than you. There are probably disabled people out there who have achieved more than you. There are probably disabled people out there who are kinder, meaner, prettier, uglier or better dancers than you, because all a disability tells you is that one part of them doesn’t work in the average way.

But this isn’t the message we get from the world.

Recently I read this article from Polly Gillespie, and it frustrates me immensely. I can see why she was angry at the man in the wheelchair, and I do think he was behaving badly. I don’t think she was doing anything wrong by using the disabled toilet, but I feel her description of disabled people as “you poor infirm, elderly, arthritic, mumps-bearing person” buying incontinence pads is childish and uncalled for, as is calling someone in a wheelchair “shorty”. The part that really bothered me though was the assumption that a disabled person’s life is “shitty” or that it is necessary to feel sorry for them. To be fair, we have all said stupid things in the heat of an argument, but I find it concerning that once she had a clear head, she and (presumably) at least one editor didn’t see a problem with putting this out there in the world.
 

My intention in writing this is not to have a go at Polly, as this does not stem from a problem within her, but from the way disabilities are viewed in general. I use this as an example, but this attitude is everywhere, and often the people making these kinds of statements do them with good intentions. People may believe that they are being compassionate or offering a kindness in feeling sorry for someone, but there is a huge difference between compassion and pity. If you’re confused about what that difference is, BrenĂ© Brown’s beautiful short film about the difference between empathy and sympathy might be a good place to start.

I really appreciate it when people show consideration and compassion towards the fact that some parts of my life are hard.

I hate it when people assume my life is shitty because of these things.

It makes me feel ashamed and embarrassed and question my own worth. It makes me feel as if my life is seen as something broken – that I will only be seen as worthy or whole if I get better or am fixed.

I can’t count how many times strangers have offered to pray for me to be healed, given me unsolicited (and almost always inaccurate) “medical” advice, or spouted diatribes about how a positive attitude will be my saviour. Years ago, I wrote about how a stranger had lectured me about how I shouldn’t accept walking with a stick, because I should be striving for something “better”. In that case, I asked him why he was so sure a life walking without a stick was better than walking with one, and he found he didn’t have an answer for that. In these cases every one of those people was coming from a well-meaning place of good intentions, so sure that their advice would make me “better”, but none of them took the time to find out what my life is like now.

Disabled people are not broken. We don’t need to be “fixed”. This might seem like a contradiction when we are often looking for medications, treatments or cures, but these are about making the hard parts of our lives easier or less painful, not about assuming a life without disability is automatically better.

Recently someone asked me why I was walking with a stick, and when I explained, he said “well I suppose a lot of people feel sorry for you.” I think I surprised even myself when the words “But I don’t need anyone to pity me, my life is awesome” came out of my mouth.

My life is awesome. It will be awesome if my disability goes away. It will be awesome if it stays. Yes, it is incredibly hard and painful sometimes, and compassion or help for that hard stuff would be welcome. But pity does not help either of us, so let’s leave that at the door thanks.



Thanks for reading
Little Miss Autoimmune

Wednesday, February 10, 2016

Spoons for the Lupus God!

I've been feeling pretty unwell this week. The last four days I've taken painkillers. This is rare for me - I usually try to avoid them if I can as my stomach is not exactly a fan - but the last couple of days I even switched to stronger ones as I just couldn't cope with escalating joint pain. I've also been having problems with nausea, dizziness, rashes, joint swelling and of course good old fatigue has been kicking my butt. I'd put most of this down to the heat and sun exposure (middle of summer here in New Zealand) but I was getting worried, as I felt so low on spoons, despite cutting down on what I was doing. Last night I found myself sitting on the floor crying, thinking "am I really going to have to cut back even more? Can't I just have a life instead of counting spoons all the time?" Then I realised my face was sore, checked the mirror, and low and behold... Butterfly Rash

I have a bit of a love-hate relationship with the butterfly rash. Obviously it's appearance is not really a good thing, because it means full blown lupus flare, but at the same time, it's reassuring in that once I see it, I know exactly why I feel crap and also, most importantly, that it will pass.  

I was talking to my friend Kendra from ACuteAngle about spoons, flares and the fact that the symbol for lupus is a purple butterfly, and she made me this fantastic cartoon:

Cartoon of purple butterfly eating spoons
Lupus God Sacrifice


This sums up so amazingly well what a flare feels like. When you're flaring, all the spoons get sacrificed to appease the lupus god, and there's not a whole lot left for anything else. Lupus is eating up ALL my spoons at the moment. But he's got to get full eventually, right? RIGHT?

Fork Lupus
If you'd like to check out more of Kendra's awesome cartoons, you can find them on the ACuteAngle Website or follow her on Facebook

Thanks for reading,
Little Miss Autoimmune


Tuesday, January 26, 2016

"Short" is not a Deficiency

A few weeks back, someone told me off for calling myself short. She said I should never say that, because it implies a deficiency. I was quite taken aback by this - one because it’s really awkward to be told off by a complete stranger and two, because I didn’t even kind of agree with what she was saying. To my mind, the only way calling yourself short can imply a deficiency is if you actually believe being short is a deficiency, and… well… honestly? If you think that, it is entirely your issue not mine. To give you some context to this situation, I’d called myself short while accepting an award (because I couldn’t reach the microphone) so I really had no reason to be feeling deficient in that moment. I’ve never seen my height as a negative, and I think trying to avoid using the word “short” would make me start to have issues about this, rather than resolve any imaginary ones she felt I must have.

This conversation did make me think about some of the other language things that come up. Sometimes people will try to tell me not to say I have a disability, and give some waffly explanation about how we’re all unique and that it doesn’t make a difference. After the “short” conversation, I had a bit of a light bulb moment as to why these kinds of pronouncements leave me feeling worse about myself, not better as I’m sure the person making them intends. Firstly, this is actually incredibility patronising. Having a disability makes quite a bit of difference to your life - it changes the way you do... pretty much everything - but not necessarily all in a negative way. While I do have some self-esteem issues about my health problems (which I'm working on!) I’m not putting myself down when I say I have a disability; it’s just a description of the situation. Secondly, people telling me not to say this implies that they do believe that “disability” is the equivalent of “deficient” and something that should skirted around or kept hidden. The message I come away with in this situation is “Disability does make you deficient, but let’s not talk about it because I, the benevolent able-bodied person, am kind enough to treat you as an equal anyway”. That's probably not what's intended, but it's how it feels.
 

Not using the word “disability” doesn’t make the disability go away. I should be able to acknowledge that this is a part of my life without the incorrect assumption that this is a derogatory thing to say about myself. I admit, some of the language I use towards myself probably does seem harsh. I’ll say things like “I’m a bit bung” and I have been known to describe myself as an “evolutionary f**K up” when the question of how many diseases I have comes up. After I posted about the problems I run into sometimes with talking to “healthy” people, a few of my friends told me that me saying “I should have been weeded out by evolution by now” made them uncomfortable. I kind of get where people are coming from with these ones, but again, I’m not actually saying these things to put myself down. I’m saying them because… well they’re funny, they’re true, and acknowledging that generally makes me feel less deficient, not more.

I guess a lot of this stuff comes down to personal experiences and preferences, and perhaps the relationships between people in these situations makes a difference too. I do appreciate it when friends call me on it if they think I’m putting myself down, especially as I do that a lot when I’m in a bad space and it ultimately feeds into negative feelings about myself. The key thing here though is that they are my friends, and know me well enough to be able to make that call. Deciding that you know what’s best for a complete stranger, especially when it comes to neutral terms like “short” and “disability” (which are only negative if you chose to view them that way) is interfering at best, and straight out offensive at worst. You can think these things if you like, you can even say them if really you want to, but perhaps turn them into discussions not lectures. After all, the person you’re talking to is the expert on what it’s like to live their life. Not you.

Thanks for reading,
Little Miss Autoimmune

Tuesday, January 12, 2016

Not sorry, thankful

A while back, a friend told me off for apologising when I’m not well. He told me if I felt I had to say something, to instead just say “thanks”. This wasn’t the first time someone had told me off for apologising – in fact a lot of people tell me off for this. It’s something I do too much of, to the point that a group of my friends once got me to draw a dot on my arm every time I said “sorry” and I eventually ended up apologising for running out of room. This was the first time someone had suggested the alternative of saying “thanks” though. I did try doing this for a while (when I remembered) but I admit, without someone telling me not to, I’ve fallen back into the habit of apologising again.

I came across this cartoon the other day, about why you shouldn’t apologise when really you mean thank you, and it makes a lot of sense.

In the past, when people have told me not to apologise, it’s made me uncomfortable. When I say “I’m sorry” if I’m sick, there’s a lot that I’m trying to express in that moment, and while an apology is not a perfect communication of that, saying nothing at all feels disrespectful. The effects of illness can be inconvenient (for want of a better word) both for the person experiencing the illness and for those around them. Plans have to be rearranged with little or no notice, solutions to things like “oh look I’ve just thrown up and fainted” or “we’re a long way from home and I can’t walk” have to be found, and stress and complications are always a possibility.

When I say “I’m sorry” I’m wanting the person to know that I don’t take their support and understanding for granted, and I do get that sometimes the effects of my illness are annoying. After reading the cartoon, I realised that “Thank you” expresses all of this far better than “sorry” ever could. “Sorry” is a word laden with guilt. Unfortunately, when these things happen, that is often how I feel about putting my friends in a position to have to help me. But my friends don’t want my guilt. My appreciation, however, would I'm sure be welcome. “Thank you” is a much better acknowledgement of everything they are doing for me.

While I was thinking about this, I realised there’s another aspect to this. There's often a misconception that if you’re being understanding you’re not supposed to have any negative emotions, but I don’t believe this is true. I want people to know that they are allowed to feel frustrated or stressed by whatever situation my illness has just caused. Many of my friends also experience some form of illness, and so I’ve seen this from both sides. When my friends are sick, and have to cancel plans or whatever, I completely understand and don’t mind. It can still be frustrating or inconvenient though, and I'm sure that they feel exactly the same when I am the one canceling. The fact we can be open and talk about this, without making the other person feel bad for feeling that frustration, is generally what makes it okay.

By apologising I’m trying to acknowledge other people’s feelings, but perhaps instead I’m creating the opposite effect. While it’s not my intention to do this, apologising may make the person feel like they have to say everything is all okay, even if at times maybe it may not be. “Thank you” again still acknowledges the inconveniences, but avoids the unintentional emotional manipulation that may be felt with an apology.

Compulsively apologising is going to be hard habit to break, but perhaps if each time I notice myself doing it, I stop and thank the person for their help instead, it will eventually come naturally. A friend (who's also a compulsive apologiser) and I did try this the other day. We're both rather clumsy people, so instead of our usual apologies we thanked each other every time we bumped into, or knocked something over. While in this case it was just for laughs, it did make us conscious of exactly how often we make unnecessary apologies, and perhaps started the process of changing this. 


So... let me take the opportunity to say thank you to everyone who reads this blog – especially friends and family. Your support means so much to me, and gets me through all the weird things my body likes to throw at me. I value you all more than could ever be expressed in words, and I hope you know that.

Thanks for reading,
Little Miss Autoimmune

Tuesday, December 29, 2015

Progress

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…

Thursday, November 5, 2015

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.

Saturday, October 10, 2015

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:


You know what? It's all going to be okay. I promise. You've got this.
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