Tuesday, July 3, 2018

I am a mosaic not a cookie jar

Picture of a face. A collage made up of small bright coloured pieces of paper.I was thinking today about how it feels when someone sees you as something that needs to be “fixed” when you’re a chronically ill person. I’ve tried to explain this before – usually falling back on saying “I don’t need to be fixed because I’m not broken” but I’ve come to realise that explanation isn’t going to work. Because they don’t believe you. In their eyes you are broken, and no amount of telling them you’re not is going to change that.

So I started thinking about it differently. What if I am broken, but that’s not really the point?

Imagine you own a cookie jar. It’s a beautiful cookie jar, a functional one too – so big and holds those cookies so well! And it can store other stuff as well – a multi-functional jar. Maybe sometimes you make punch in it, and serve it up at dinner parties, and everyone tells you how beautiful and wonderful it is.

Then one day the cookie jar breaks. Smashes. Like irreparable - broken into a million tiny pieces, some of it is now ground into sand, smashed. You devote days – weeks – to trying to put it back together. You spend hours on the internet, and talking to repair specialists, but all of them say the same thing: “I’m sorry, but this is too broken to repair.” But you don’t believe them. You go it alone, trying glue after glue. You even try some alternative repair techniques – you origami the crap out of that jar, trying to make it hold together. 

But none of it works.

You cry. You get angry. You spend days on the floor just lying in amongst the pieces.

And then one day you accept it. Your jar is broken, and it isn’t coming back. So you pick up the pieces, and you start to make a mosaic.

There are still days when you miss the jar, but as you work, you start to realise you are making something amazing. Some days you even look at the art you are creating, and you think it is more beautiful than the cookie jar was originally. You start to love it and become proud of it.

Then someone comes to visit. They look at the mosaic. Their face falls. You broke your jar, they say.

Suddenly the mosaic you worked so hard on doesn’t seem quite so beautiful anymore. Suddenly you feel embarrassed of this thing you have been building. It seems unimportant and useless, not like the cookie jar which could hold all the things.

I know someone who’s jar got dirty, they say. They cleaned it and it was good as new.

You should go to a repair specialist, they say

You are just not trying hard enough. You could fix it if you wanted to. Think positive!

I can fix it! It just a tiny crack.

And you start to wonder if you were exaggerating. Maybe there was only one crack, and you could fix it! So you pull apart the mosaic you have spent so long building, and you are hopeful that this time you will fix it – you will have your cookie jar back! And you try, and try again to fix it. You go to the woman who washed her dirty jar, and she washes the pieces, but that doesn’t put them back together. You go to another repair specialist, but they tell you there is no hope. So you try harder, and you think positive, and you pray and hope, and try again and again… but still it is broken. 

You have to give up again.

You have to grieve again.

You have to start the process of acceptance and making something good out of the pieces right back from the beginning.

This is what it feels like when someone wants to help fix or cure chronic illnesses. It feels like they don’t see all the good you bring into the world – all the beauty you have created around the hard parts… And maybe that is not how they feel. Maybe they do think the mosaic is beautiful, they are just convinced the cookie jar is better and are sad for you that you don't have it anymore. But that is not for them to decide, and it’s pointless and kind of hurtful to keep bringing it up when the cookie jar is gone.

I know that people are trying to help when they suggest fixes for my illnesses, and I do appreciate that they are wanting to make things easier for me. But there is a big difference between “This will fix you” and “I wonder if this might help?” and also a big difference between suggesting something and insisting that someone must try it. I don’t mind when people make suggestions – some of them I am really thankful for – but I do need people to do it in a way that respects the life I have now.

I am done searching for that cookie jar. I love the mosaic my life has become, and I’m not looking to go back. But if you can suggest a gloss that will make my pieces a bit shinier… then by all means tell me about it. I'm all for shiny pieces.

Thanks for reading,
Little Miss Autoimmune

Monday, June 18, 2018

Plastic Straws Are A Strange Hill to Die On


The other night I found myself watching a video about a bar which has started using straws made out of pasta as a biodegradable alternative to plastic straws. Now, obviously I’m a coeliac, so this isn’t something I would personally ever want, and I could see a few other flaws with the idea. But overall, I thought it was cool that the bar was thinking about the problem, and approaching it with creativity and innovation.

And then I read the comments.

Man, this has to have been one of the most bizarrely passionate comments sections I have ever read. People were mad about food wastage, people were mad that we don’t just drink straight out of the glass, people were mad at hipsters… the anger just went on and on. But the comments that surprised me were the many many able bodied and normal-eating people getting mad on behalf of coeliac and disabled people.

So, the coeliac part of this is kind of obvious. If you order a drink, you don’t expect for it to arrive with a lump of glutenous pasta in it, and in all honesty if I drank out of a straw assuming it was a normal one, and then later found out it was made of gluten, I would be pretty annoyed. But that scenario is quite unlikely. While there obviously is a noble environmental motivation behind this, the pasta straws are clearly also (at least in part) an advertising gimmick for this bar. They’re not keeping the fact that their straws are made of pasta a secret – they’re proclaiming it loudly for all to hear. It may become an issue down the track, when the novelty wears off, but any problems would be mitigated by a simple note on the menu saying that the straws contain gluten and to let staff know if you have an allergy.

The disability part of this is a bit more complicated. For some people with disabilities, differences in strength, function or movement can mean that straws are an essential part of daily living. People facing these issues may not be able drink safely or independently without them. In this case, straws usually do need to be plastic, as the size and malleability are important, and therefore metal or pasta straws aren’t always a suitable replacement. Straws are also often used in rest homes and hospitals for similar reasons, and again alternatives other than plastic probably wouldn’t be appropriate.

When I saw comments along these lines, and realised the majority of them were coming from able-bodied people, at first I felt pleasantly surprised. It was nice to see able-bodied people thinking outside of their own experience and considering what impact a simple change might have on people with disabilities. But as I read on, and the anger and vitriol in the comments rose, I started to feel a bit odd about it.

While it is nice to see able-bodied people going out of their way to advocate for people with coeliac and/or disabilities, I feel like this is kind of a weird one for people to be getting so passionate about. The gluten stuff is a potential danger, but it wouldn’t be that hard to remedy with clear labelling and a few simple kitchen protocols to avoid cross-contamination. With the disability stuff, the times I’ve eaten in a café or restaurant with someone who needed a straw to be able to drink, that straw came from the person’s bag not from the restaurant itself. This isn’t my experience, so I can’t say this for sure, but my guess would be that it’s pretty common for people who need straws to carry their own, as they couldn’t be sure of always being able to get one from a bar/restaurant. While people needing access to plastic straws is an issue, I’m just not sure bars not supplying them is as big of an issue as some were making out.

The thing that bothered me the most about this though, is I don’t often see this level of passion from able-bodied people over other disability or illness issues. There have been so many times when I or someone else has pointed out that something is not accessible, and the response has been “Oh… that’s a shame,” and a swift change of subject. Worse, online the response is often defensive, angry or filled with nasty personal attacks, instead of doing anything to try to understand or mitigate the problem.

Where is the passion and support for those things, which (in my opinion) cause a much bigger barrier to disabled people participating in life? I know, we all have our own lives, our own causes and we simply can’t get involved in fighting for everything. But I do have to ask myself why, when people are finally getting passionately involved, is it over plastic straws?

Now I don’t want the take away from this to be “stop caring about plastic straws.” This is a real issue – both from an environmental perspective, and from the point of view of making sure people who need straw still have access to them. But if you care about plastic straws for people with disabilities, maybe just try to use some of that passion towards other disabilities issues too.

Thanks for reading,
Little Miss Autoimmune

Sunday, April 15, 2018

A Little Bit of Lupus - Guest Post by Author Megan O'Russell

Author Megan O'Russell
Along with being a blogger, I'm also a young adult author. One of the cool things about this is that I get to connect with other authors from around the world. Like any career, writing can be tricky when you're living with chronic illness, but it is more forgiving than many other jobs, and it certainly provides other benefits and ways to cope with the harder parts of illness. Someone who understands this is my fellow author Megan O'Russell. Like me, Megan is living with lupus and writing young adult novels (her writing is brilliant by the way - highly recommend How I Magically Messed Up My Life in Four Friggin' Days.) Unlike me, she's also juggling a career as a musical theatre performer and living in a tour bus!

Megan's been kind enough today to take time out of her busy schedule, promoting her new book Boy of Blood to tell us a bit about her fascinating life and about her lupus story.  

A Little Bit of Lupus by Megan O'Russell

I was diagnosed with Lupus after one freak day when I was twenty-three. It had been snowing during the night, and I was too nervous to pull off the highway to get gas on the way to work.

Fast forward to the end of the day. I was stuck in a parking lot with a dead car battery, no gas, and really terrible frostbite, even though the temperature had jumped up to 50 Fahrenheit (10 Celsius).

My husband insisted that I go to the doctor and have my gray fingers looked at. Luckily for me, the doctor at the urgent care took the time to ask how I had gotten frostbite and was diligent enough to realize something wasn’t right. About a week later, I was seeing my first Rheumatologist with a diagnosis of S.L.E.

That was… we’ll just say a while ago.

And here’s the thing. For someone who’s been living with autoimmune for a while, I’m really pretty healthy. I make my living singing and dancing on stage as a musical theatre performer. I’m also an author with three different series at two different publishers.

Right now, I’m on a national tour of a show where I spend much of my allotted sleep time curled up on the floor of a bus. Sleeping under my bus seat isn’t as bad as it sounds, but still, not something that you picture someone with a chronic illness pulling off.

Whenever I tell someone I have Lupus, either in casual conversation, or because I need them to know, I feel like an imposter. If I can dance on stage, I’m not really sick right? If you can hike a mountain, do I actually need to go see a doctor?

It comes from all sides. I had a lab tech laugh at me because he didn’t know why he needed to do a chest scan on someone who’s still sweaty from doing a 5K (I’d say running, but my lungs were in bad shape and I’m not great at self cooling, so it was like a 2.5k run/2.5k shamble along).

My husband almost stopped talking to some of our friends because they could not understand why I could possibly need to sleep between shows. They thought I was just being lazy and territorial in my wanting to nap in my room. Nope. I have to sleep to stay off steroids.

Trying to explain to each new team I work with on a show that, yes, I have Lupus. No, you won’t ever notice on stage. The spilt between treating me like a hypochondriac and an egg shell are about 50/30 (20% are really awesome).

I was at the doctor not too long ago because I wasn’t breathing very well. Her response: “How are you dancing if you can’t breathe?” I see lots of spots and try not to fall over, that’s how.

The other actors do crazy workouts before the show. I have to save my energy for the stage.

Some of the people we travel with only manage to sneak in a few hours of sleep a night. I’m not trying to compete with how little sleep they’re able to get when I say I’m just plain old exhausted. Not from lack of sleep, just from existing with an auto-immune disease.

And… I still feel like an imposter because I’m not that sick. Even at my worst, I’m still surviving.

Maybe that’s why I’ve turned so whole-heartedly to writing. A profession where it doesn’t matter if your lungs are acting funky, and no one cares if I look a little dead behind the eyes.

In acting, the first thing I do in my workday is go into a dressing room and strip down with my coworkers. There’s nowhere to hide the dent in my legs from the steroid injections.

My characters don’t care about the thigh dents. My literary agent doesn’t care if my cheeks are puffy from steroids.

I am completely safe and competent while writing. I can create a world where monsters reign and magic is a constant battle while icing my knees. The magic of first love can be created while my whole torso (at least it feels like my whole torso) is covered in Vicks.

Acting and writing are both forms of storytelling, but when living with auto-immune, they are the exact opposites.

My word count doesn’t give me a five minute warning that I’m about to start a two hour creative sprint that will stop for nothing short of the theatre catching fire.

If my brain can’t sort through how to finish a scene, I click save and shut the computer. And you know what? My characters can’t complain. Why? Because I shut the computer, so ha!

In writing, I’m in charge. I get to say how much or how little I’ll do on any given day. I have the power to take a step back for a moment, and no one will take the story from me because it’s mine.

I’m not an imposter. I’m an author. And the author writes the rules… literally.

And there’s something in spending more time as an author, in finding a venue outside the stage lights where I’m useful and competent, that’s made it much simpler for me to say no in other aspects of life as well.

No, you’re wrong. Just because I don’t look sick doesn’t mean I’m fine and just need a cup of coffee.

No, I don’t have to go to the gym everyday before the show just to keep up appearances. I’d rather not have fire shooting through all my joints, thank you very much.

Page or stage, I am living and thriving with Lupus. And it doesn’t really matter who can’t believe I’m ill.

I am more than just my messed up little body. I am a useful, competent, worthy human, and I am not an imposter. Lupus is one small part of my enormous and overwhelming life. My story is my own.

Book Cover of Boy of Blood by Megan O'RussellMegan is a native of Upstate New York who spends her time traveling the country as a professional actor. Megan's current published works include the Girl of Glass series, How I Magically Messed Up My Life in Four Freakin' Days (The Tale of Bryant Adams, Book One), and The Girl Without Magic (The Chronicles of Maggie Trent, Book One).

When not on stage or working on her books, Megan can be found blogging on LifeBeyondExaggeration.com

For more information on Megan's books and for Megan’s author blog, visit MeganORussell.com.



Thursday, January 18, 2018

Anxiety? Or crappy situation.

I’ve been having the same conversation with several wonderful people in my life lately. And, if I’m honest, I’ve been having the same conversation with myself too. It can basically be summed up like this: 

Just because you have anxiety, it doesn’t mean things aren’t actually scary.
Just because you have anxiety, it doesn’t mean life isn’t really hard sometimes.
Just because you have anxiety, it doesn’t mean people aren’t behaving in an absolutely sh*tty way towards you.

When you live with anxiety, you get used to pushing down your feelings. Your mind and body spend a lot of time making you feel like you are in serious danger, but logically you know you’re not, so you have to push those feelings away in order to be able to function. Anxiety also spends a lot of time making tasks feel ten times harder than they should, magnifying criticisms, and twisting words and situations until you feel worthless and like everyone hates you. So we spend a lot of time not trusting our own perceptions – repeatedly telling ourselves that we are not trustworthy.

The thing is though, sometimes we are right.

At the end of last year, I was lucky enough to be able to travel overseas to England and Germany. Considering I live literally on the other side of the world, I knew that some of this was going to be a real challenge for my health – both physical and mental. Even more so because in the weeks before I left, I had been under some extreme stress and as a result had a really serious sleep walking incident injuring my head and neck.

Fortunately, my physical health held up surprisingly well while I was overseas. There were a couple of points where I really, really needed the wheelchair assistance at the airports, as I couldn’t hold my own weight after sitting for 12 hour flights, and one day in London where I had pretty bad vertigo and nausea. But otherwise I kept it together physically, and my anxiety was staying in check too. 

Until I got to Germany.

My arrival in Germany was not at all straight forward. My aunt was kind enough to drive me the two hours from where I’d been visiting her in Bristol, back up to London, then I needed to catch two flights and two trains to reach the city where my friend lives. I was nervous about the journey, given that I have the direction sense of a carrot and quite often get lost in my own city, let alone halfway across the world where my grasp on the language is pretty limited. But I psyched myself up, researched and wrote down the train times, and started the journey.
Wing of a plane over clouds, taken from an airplane window

And then the flight was delayed.

And then the second plane was late.

And then by the time I arrived, the train I was supposed to catch was no longer running, and the only other option was a much longer journey.

And then I realised that there were only two people around, neither of whom spoke any English, and I was completely blanking on any German other than “Entschuldigung, sprechen Sie English?” (Excuse me, do you speak English?) and “Kannen Sie mir hilfen bitte?” (can you help me please?) which does not help when the answer is invariably “nein” and you do not have the language skills to understand the help they are trying to give you anyway.

And then, after managing to communicate that I needed to get a train to Jena (ein Zug nach Jena), the information I was given did not match up with the information displayed on the train platform.

And the ticket machine did not have an English option that I could find, and it timed out three times as I tried to figure out how to make it work. Nor would it accept my money or my card, and the fines for getting on the train without a ticket are high.

And when I got hold of my friend to ask for help, she couldn’t translate the information either.

And then my phone died.

And then there was no one around, let alone anyone I spoke the same language as.

And then I was completely alone on a train platform 
in Germany,
in the middle of the night, 
in the snow, 
with no idea whether I was even in the right place.

So naturally, at this point I was panicking. By now it was after midnight, I was jetlagged, I’d been traveling for about 14 hours, and I was fricken exhausted. My legs were spasming, threatening to give out, but I knew if I fell I probably wouldn’t be able to get up again. Given the snow, being stuck on the ground overnight would likely mean hypothermia… and possibly losing some toes.

To cut a long story short, I saw there was only one train left on the board, so finally managed to persuade the ticket machine to take my money and got on it. At the next stop, I discovered the information I’d been given about the second train was completely wrong, but I did at least find some people who spoke English. They didn’t know where I needed to go, but they could at least point me in a likely direction. I then spent far too long standing in an elevator which said “doors are opening… doors are closing… doors are opening… doors are closing…” repeatedly but wouldn’t go anywhere or let me get out, before finally dragging myself and my suitcase up a couple of staircases while a group of men laughed at me from the top. I found the right train, got on it, and my friend met me at the other end.

Okay, so aside from the fact that a lot of this is now funny in its ridiculousness with some distance, why I am telling you all this, and what does it have to do with anxiety? 

I look at this story now, and I am incredibly proud of myself for keeping it together and figuring out what to do to get myself safely across Germany. At the time though, I was furious at myself for panicking. I was convinced I was making a big deal out of nothing, and that anyone else – anyone who didn’t have health problems or anxiety – would have been absolutely fine. Heck, I was even blaming myself for the whole situation – surely I was somehow to blame for the planes arriving late, the ticket machine being faulty and for the train timetables at the airport being out of date. It was clearly All. My. Fault.

Except it wasn’t.

None of this was in my control, and in fact, I handled it a lot better than most people would have. Right from the first delayed flight, I was coming up with back up plans for what I would do if I couldn’t catch the flights and trains I’d planned to, and when those back up plans got thwarted, I kept coming up with new solutions until I found something that worked.

It really wasn’t until I told the story to other people, and they responded with a horrified look, or said they would have sat down and cried if it had been them, that I realised this was actually a really stressful situation, not just an overreaction from me. This is pretty much the conversation I keep having with my friends. I find myself saying to them:

Yes, you have anxiety, but no, you are not overreacting, your partner/boss/flatmate/family member/friend is actually being unreasonable. No, you are not weak and useless, life has just thrown you so many curve balls you’ve forgotten what straight looks like, and actually you are stronger than everyone else to have dealt with all of them. No, you are not stupid, your work/study/technological item is just really, really hard to get your head around sometimes.

You see the thing people sometimes forget is that it’s entirely possible to both have anxiety and be upset because of a genuinely yuck situation – the two do not negate each other. 

Each friend who has come to me, I’ve reminded them of this, and they’ve done the same for me when I’ve started to doubt. Of course, there are going to be times where it is my anxiety or an overreaction, but I honestly think deep down I do know the difference, I’ve just stopped listening to myself. 

I don’t know what the solution is here. Finding the balance between pushing anxiety away, and listing to the real and valid fears is hard, and it’s something I (and my friends) will probably have to keep working on for a while. In the meantime, when my friends come to me with situations like this, I’ll remind them of one important thing:

You are worth trusting

And I’ll remind myself of the same thing.

Thanks for reading, 
Little Miss Autoimmune

Tuesday, November 21, 2017

When you really have tried everything...

Last week, I had one of the worst sleep-walking incidents of my life. I’d had some distressing situations going on, and as often happens during times of stress this led to my sleep disorder worsening. I sleep ran/fell full-speed, head-first into my cupboard door. As you’ll see from the photos below, this caused some damage to both my head and the door, and I also injured my back and neck in the process. I spent the rest of the night in hospital, lying perfectly still, while doctors assessed whether my neck was broken. I get very anxious about my neck being touched, so having to let strangers put their hands around my throat, and at times restrain me to stop my head moving was probably one of the most stressful parts of all this for me. It turned out to be a complicated task as my X-rays don't look normal for someone my age due to the damage to my spine from my arthritis, and so making a clear-cut ruling as to whether or not my neck was broken was difficult to say the least.




My head has now healed up, bar some scarring, but in the nights since, I've continued to have sleep disturbances, waking with frightening dreams and repeatedly getting up to interact with them, often re-injuring myself. I’ve now got a motion sensor night-light which wakes me up if I get outside my bedroom, but the sleep disruptions are still exhausting, and it turns out there are still several ways for me to sleep-injure myself without leaving my room (sorry knees!)


Most of the time, I don't think living with illness is a big deal. This is one of the times where I'm reminded it kind of is. My neck has been cleared, but this very easily could have gone the other way, given the force with which I hit the door and the fact that my bones are already weakened by my illnesses and medications. Even though I tried very hard to comply with the medical staff's instructions to keep completely still, the stress and sleep deprivation caused my muscles to start spasming and the nurses had to restrain me to try and protect my spine. If my neck had been broken, this could have caused serious damage. As much as I want to stay positive, find the funny side, and calmly move on from this experience, I can't help but feel a little scared when I think about that.

I’ve realised though, that right now, it is okay for me not to be okay. Being scared is a normal reaction to an abnormal situation. In fact, I think it would be far more worrying if I was completely fine right now, as that would be a sure sign that something was very wrong! I’m handling this a lot better than most people would, as I’ve had plenty of full-on health situations, and have built up a fair bit of resilience. But I’m still not okay. And that’s okay.

I’ve been getting a lot of questions lately from friends as to why I’m not on sleep-medication, whether various alternative therapies would help, or whether I should be in some way restrained at night. Of course, after this, I have myself been questioning my decision not to seek further treatment for my sleep disorder. While I have hurt myself before while sleep-walking, this is the first time that I’ve faced the prospect of ending up with a long-term injury caused by my sleep disorder. I even started feeling guilty about my decision, and wondered if I brought this accident on myself by choosing not to continue searching for answers.

But this guilt comes from an illogical place. My doctor fully agrees with my decision not to continue looking for treatment, and she confirmed that there are no more medical options left anyway. When it comes to non-medical therapies, I have fought the sleep disorder with everything I have. To clarify things for myself, I wrote down a list of everything I have tried to help improve my sleep disorder. It was four and a half pages long, and I’m sure I was forgetting some things. I’m not going to include the full list here, but here are a few examples:

  • ·         Sleeping tablets
  • ·         Different sleeping tablets
  • ·         Medication specifically designed for sleep walking
  • ·         Sleep restriction therapy
  • ·         Treating thyroid, iron, vitamin D and vitamin B12 deficiencies
  • ·         melatonin
  • ·         Meditation/mindfulness (various types)
  • ·         Relaxation (various types)
  • ·         Cognitive behavioural therapy
  • ·         Homeopathic sleep drops
  • ·         Lavender sleep balm
  • ·         Weird alternative therapy I can’t remember the name of which involved holding metal rods and balls
  • ·         Treatment for heavy metal poisoning (including removal of fillings)
  • ·         Keeping a strict bedtime and wake up time
  • ·         Only going to be when tired and not setting an alarm
  • ·         Warm milk
  • ·         Counting out of sequence
  • ·         Sleeping naked
  • ·         Sleeping under a weighted blanket
  • ·         Hypnosis (both in sessions with a therapist, and self-hypnosis using a guided audio.)


Most of the things I’ve tried made no difference to my sleep-problems, while others made it worse, or had dangerous side effects. The only thing that made a significant difference, was having an assistance dogstay with me, but it’s going to be while before I can have a dog permanently.

As you can see, the list ranges from medical interventions, to psychological interventions, to alternative therapies, to straight out old-wives’ tales. Some of the things on the list even contradict each other, as in cases where I’ve been given conflicting advice, I’ve tried to give each option a shot. I can confidently say I have tried it all.

Even if I hadn’t tried everything, this disorder is still something outside my control and I don’t need to feel guilty for it anymore than someone with cancer should feel guilty for the effect the disease has on their body.

I understand my family and friends’ worry, and I appreciate their concern and care for me. Continuing to battle against the sleep disorder in these ways isn’t going to help right now though. Earlier this year, I ended up feeling very bad about myself for having anxiety, and spent a lot of time and energy on wanting to get rid of it. All that did was cause it to escalate. As soon as I came back to accepting my anxiety as just something that is a part of my life, it drastically reduced to a much more manageable level. I feel like the same applies here. I am going to sleep walk more at the moment, as stress and sleep-deprivation make it worse. That sucks, and it’s unpleasant to keep injuring myself, but getting upset about it and coming up with new (and bizarre) ways to try and stop it is just going to cause more stress and make it worse.

With any luck, it won’t be too long until I’m assigned an assistance dog and in the meantime, I’m taking a deep breath and trying to accept the sleep adventures.

Thanks for reading,
Little Miss Autoimmune.

Monday, September 4, 2017

Acceptance, Sleep Disorders and Dogs

Last year, after things went so badly wrong with treatments for my sleep disorder, I decided not to seek further treatment. In part, this was because there weren’t a vast number of further options left to try, but it was also about the effect the previous treatments had had on me. Some had made no difference, but the emotional roller coaster of hoping they would then being disappointed when they didn’t was detrimental to my wellbeing. More often than not though, treatments had instead increased my sleep problems, and left me in a worse state than when I started. I decided that accepting the sleep disorder as a part of my life was preferable.

This was not a decision I made lightly. I had to spend a lot of time soul searching to figure out whether I was simply avoiding other treatments out of fear, or whether not seeking further treatment and accepting the disordered sleep was a valid option. In the end, I came to the conclusion that acceptance was the right path for me. 


This has been hard for some people to understand. I’ve had many people suggest a range of alternative therapies, or insist that I should go back to the sleep specialist or seek a second opinion. I’ll admit, my responses to these suggestions have not always been polite, and I do at times get defensive in these conversations. Accepting my sleep disorder doesn’t mean that I want to have it, or that I have given up. It just means that I no longer put any energy into resenting or trying to change the fact that I do have it. When it comes down to it, I don’t really believe the sleep disorder is going anywhere, no matter what I try. I can continue to put all my energy into fighting it, or I can choose to live the best life I can with it.


Accepting something negative as a part of your life is not always easy, and there are times, particularly if I’m having a run of bad nights, where it can be nearly impossible. But ultimately, I believe this is the best thing for me.

There is of course still the problem of the more dangerous aspects of my sleep wandering. My sleep specialist advised that I would need to make my environment as safe as possible. My floors need to be kept clear, to reduce the risk of tripping, and I keep all internal doors open so that I don’t run into them when I’m trying to escape scary dreams. Unfortunately, there’s only so much I can do, and I do still at times injure myself or wake up to find myself in potentially dangerous situations.


Just after things got really bad with my sleep stuff, a friend suggested getting an assistance dog to wake me if I started sleep wandering. I wasn’t 100% sure how or if it would work, but it seemed like something that could potentially help, so I applied. The waiting list for dogs was several years long though, so I didn’t expect anything to come of it for a while.


Earlier this year, I was contacted by Assistance Dogs New Zealand, saying that even though I was still quite far down the waiting list, they had a dog who they thought may fit my situation well. They began the process of training him for me.


To cut a long story short, this particularly dog did not work out for me. He had very high energy, and was quite strong, which was difficult for me to manage as I’m unsteady on my feet and don’t have great hand strength, so couldn’t grip his lead very well. This is of course one of the difficult things about having multiple conditions, as sometimes the things that help one make another worse. The fact that my conditions are so changeable also didn’t help, as I was having a particularly good day when I was first interviewed by Assistance Dogs New Zealand, and so they matched me to a dog based on that. But I would also need to be able to care for the dog at my worst, and after seeing me on a bad day, Assistance Dogs NZ decided that this was not the right placement for this particular dog, and I had to agree.


The good thing was that I had a trial with another dog, before he went to his permanent placement. He was a lot calmer, and found this very helpful for my sleep problems. While it didn’t stop me having sleep disturbances, I found that I didn’t react as strongly to them. While I was still very scared of the things I was seeing, I could tell from the fact that the dog wasn’t reacting to them, that they must just be dreams. This meant I felt less of an impulse to get up and run away, which reduced the risk of me hurting myself. Funnily enough, this has never worked with having a person in the house, as I tend to just incorporate them into my dreams, or even blame them for the strange things I’m seeing!


So, I am back on the list to be matched with another dog, though it will be a couple of years before that happens. In the meantime, I am fundraising for Assistance Dogs New Zealand, as raising $20,000 to go towards training future dogs is a requirement of receiving a dog.


This has been an interesting time for me. Of course I got attached to both the dogs who came and stayed with me, and was very sad to see them go, but it was very useful to have this experience before I receive my own dog in a couple of years’ time. I still believe that not fighting against or resenting my sleep disorders – or any or my illnesses for that matter – is the best thing for me. I can live a great life with or without health problems. Having an assistance dog is just a way for me to manage my illnesses, and live my best life, sleep disorder or not.


If you’re interested in Assistance Dogs New Zealand, and the work they do, you can find more information on the Assistance Dogs New Zealand website. If you would like to, you can also donate to my fundraiser for them on my Givealittle page. All donations, big or small, are very gratefully received 😊


Thanks for reading
Little Miss Autoimmune



Tuesday, July 18, 2017

Not All Spoons Are Created Equal

The last few months, I haven’t been doing so well mentally. My anxiety has been through the roof, and looking back at some of my thought patterns, I think I’ve also been struggling with depression. These are not exactly new things to me – I’ve lived with anxiety and depression since I was a teenager – but I’m usually more aware of what’s going on and can therefore manage it. This time it seemed to be escalating dramatically for no reason. But when I look at it properly, with a bit of perspective, this didn’t come out of nowhere. 

I’ve been really busy this year, what with taking on multiple new students, studying, and publishing my first novel. The stress of having to so much to do, so much to learn, and having to keep multiple to-do lists at the front of my mind, started to get to me, and I felt like I was haemorrhaging spoons most of the time. My last post was about trying to get better at remembering to count spoons, and so I tried to cut out anything unnecessary, in order to save energy.

This should have worked. Reducing what I was doing should have left me with more spoons, and feeling more able to manage things. Instead I think it had the opposite effect. I felt more stressed, more anxious, and slipped deeper into negative feelings and fatigue. As this has gotten worse, my self-esteem has been plummeting. I found myself struggling to leave the house, having panic attacks at the thought of having to catch a bus, and reducing the number of people I talked to until I could count them on less than one hand. I also started to find holding conversations hard, as I’d done very little except sit at a computer screen doing admin all day, and felt like I had nothing interesting to talk about. 

This isn’t me. Despite all of my illnesses and challenges, I am usually someone who lives widely. I’m someone who’s pretty comfortable going off by myself to events, talking to strangers, and have a pretty amazing group of wonderful friends. I enjoy trying new things, and have done many things which others find far too scary.

So what was happening here? Why was reducing what I was doing increasing, rather than alleviating, my anxiety? 

I’ve come to realise that not all spoons are created equal. Most of what I cut out was the fun, social stuff. I lean towards being a bit introverted, needing time to recharge after doing things involving other people, and so these do tend to take more spoons for me. This seemed like the obvious stuff to cut out, but I hadn’t taken into account what these things give me. Going out with friends, meeting new people, or going to events brings a lot of positivity and inspiration into my life, which offsets the tiredness that comes with it. 

It probably also didn’t help that I was working and studying by myself from home, which meant I wasn’t even going outside for days at a time. I think if I had just been outside walking to work every day, or in an office with colleagues, it probably would have offset at least some of what I was feeling.

It hasn’t all been bad. Publishing my novel has been an incredible experience, and I’m very lucky to have had the work and study opportunities I’ve had this year. I also have some amazing people in my life, who have been there through this period. Looking back, I can see I have been disconnecting though. My emotional state had been making it hard to be present in any situation, as I get stuck in anxiety loops in my own head. 

When it comes down to it, this isn’t something other people can fix, but spending time with people rather than isolating myself is going to be a big part of getting myself back on track. It’s also important for me to be doing things other than work. For the moment, that’s taking the form of going to talks, shows and other interesting events. I remember writing a few years ago about another period where I had been isolating myself after some stress, and how much it helped going to events where you don’t really have to talk to people, just go and listen. I’m hoping this will also be the case again, and with time all forms of socialising will get easier too.

Looking back at my old blog posts, I feel like I’ve been getting myself into bad situations with my health and mental health again and again over the last few years. Last night I couldn’t help but think of the saying “A lesson will repeat itself until it is learned.” I felt a bit defeatist, knowing I keep putting myself into the same bad places, and seemingly not learning my lesson. But today as I’m writing this, and looking back at my old posts, I know that each time things have gotten out of control with my health or mental health, I have learned a little more. I have taken a little more responsibility for my own part in it, and I have got myself back on track a little quicker each time. 

Perhaps my learning still isn’t done yet. It may be that I do need to encounter this lesson again, before I fully understand it, or perhaps I am done, and have finally learned what I need to. Either way, I can at least learn this part of it – to stop isolating myself and realise that fun and adventure are just as important to my wellbeing as rest and saving spoons – and I can keep making changes for the positive.
  
Thanks for reading,
Little Miss Autoimmune
  

Sunday, May 7, 2017

Yes, You Still Have to Count Spoons.

I’ve been having a lot of trouble counting spoons lately. Usually when I start to have problems with this it’s because I’m feeling really awful, and scraping together enough spoons to do even the simplest tasks is hard. This time, it’s kind of the opposite problem. I’ve been really well lately, and when I feel good, I tend to forget I still have restrictions on what I can do.

Sometimes this isn’t such a bad thing. It’s okay to test the limits a bit – do a bit more, and if it turns out it’s too much, scale things back. But something in me seems to have lost the plot a bit at the moment, and I’ve been booking in things that would be hard even for a healthy person to do, as if I think I’ve become superwoman. I find myself thinking “It’ll be fine! I have way more spoons now!” No. No, actually I have some more spoons now. Not enough to do everything and certainly not enough to do 15 hour days (what was I thinking!)

Fortunately every time I’ve overbooked myself recently I’ve realised it’s not going to work, and managed to reschedule things without letting anyone down, but it’s caused a fair bit of anxiety for me in the meantime. As with most anxiety, there were many factors involved, including that I was late on getting my B12 shot this month, but at the point where I had to simply walk out on something because I knew I was about to have a panic attack, I realised I had to get things better under control. So, I’m learning my lesson and getting better at carefully planning what I take on so I don’t keep putting myself in that position. It’s made me wonder, though, what’s brought on this sudden inability to spoon-count for me. Part of it is that’s there’s always an adjustment period to having more or less energy, as you figure out exactly what you can and can’t do now, but I feel like there’s more going on here.

Well, the obvious thing is that there are lots of things I want and need to do at the moment. I’ve been given lots of awesome opportunities lately, and I’m loathe to turn them down, but that does of course have to be balanced against the commitments and responsibilites I already have. Sometimes making those decisions can be really hard. Saying “no” can mean letting someone else down, missing out on something you really want to do, or both.

The other thing that’s been playing on my mind a lot lately is a feeling of being a “fraud”. When I’m feeling well, it seems less valid to say no to things because of my health. I’ve had times recently where I’ve said no to something then thought “Wait, could I have done that? Is it true that I’m not well enough? Am I actually even still sick?” After getting my blood test results back a few days ago, I can say yes, I am definitely still sick (nothing to worry about – just quite clearly showed a flare) but there’s a niggly part of my brain that makes me start to doubt myself.

I know very well that if this was a friend rather than me, I’d be reminding them that invisible illnesses aren’t always consistent and just because you can do something one day doesn’t mean you can do it the next. None of that means it’s not real. I also need to remind myself that part of the reason I’ve been well lately is because I’d been doing a good job of taking care of myself. If I start taking on too much, and let the healthy eating slip (guilty) don’t exercise enough (also guilty) and forget to take my meds on time (yep, done that a few times too lately) I’m not going to stay well. I also need to remember that I’m not a fricken super hero. If it would be a lot for a healthy person to do, then there’s no reason for me, a non-healthy person, to feel guilty that I can’t.

So, I’m going to do better at counting spoons, and try giving myself a break and stop accusing myself of being a fraud. I’m also going to forgive myself when I fail at times, take on too much, and have to spend a day curled up on the couch because I’m too tired to do anything else. Sometimes that too is just a part of this process and gettting mad at myself is quite frankly a waste of spoons.

Thanks for reading,
Little Miss Autoimmune

Tuesday, February 28, 2017

A PART OF ME HAS DIED!

I wrote the post below a couple of weeks ago. At the time, I'd just developed some unusual pain and changes to my skin, and had had some abnormal test results, so was starting down the journey that goes with that. From there, things moved pretty quickly. An ultrasound showed what looked like a lipoma (a benign, fatty tumor) just above my hip. Usually these are harmless, but there were some abnormalities so I was referred to a surgeon. Within days I had received an appointment time for the surgery.

It all seemed super simple. It would be an easy procedure, all over in 45 minutes, and I would only need local anesthetic, rather than general. I kind of couldn't believe that for once I had something easily diagnoseable, and even better easily fixable. While the abnormalities seemed a bit worrying, the prospect of the pain going away was enough to calm my concerns. There was a part of me that was even looking forward to getting it all over with.  

But when has anything to do with my health ever been simple?

I saw the surgeon today, and when he and the nurse saw the indentation on my skin, they both said variations of "Oh... that's not right," and very quickly came to the conclusion that this is not a lipoma. If it is a tumor, it would have to be a more nefarious form, but the more likely diagnosis is that some of my tissue has died (fat necrosis.)

There are a few possible causes for this, all of which are somewhat worrying.

Fat necrosis is sometimes caused by injuries. I do injure myself a lot - clumsy + issues caused by my illnesses - but I don't remember anything significant enough to have caused this. Given my sleep disorder, there is a possibility that I hurt myself in my sleep. I think this is unlikely, as I'm sure I would have remember something or at least found some evidence of an accident in the morning. If it was a sleep accident, then it's concerning for several reasons. 

I remembered today that I did have a really nasty black mystery bruise in that area a while back. It's possible that was from an injury I don't remember getting, or it could perhaps have been the early stages of the tissue dying, and I didn't recognise it for what it was at the time.

Another possibility the surgeon suggested is that it could be from having steroid injections. It's been a year since I had one, and I'm not sure if it was on the same side, so I'm dubious about this being the cause. If it is, then I'm guessing that may mean I'll have to drop steroids as a treatment option (I can't take them orally) and it does make me a bit worried about all the other injections I take on a regular basis. 

The final option the surgeon suggested was that it could be down to some autoimmune/lupus activity... not exactly ideal as this would raise the question of whether it's going to happen again.

For now, I don't know. Like everything, I may not get a clear answer as to what caused this. I've been referred for an MRI, and possibly a biopsy after that, to firmly rule out the possibility of a tumor. If it is necrosis, the surgeon has advised not removing the dead tissue as this would be a bigger surgery, and would leave significant scarring. While I feel self-conscious about the way it looks at the moment, I agree that it's not worth risking it ending up looking worse. I'm not happy that this means the pain won't be going away, but I have lived with pain to greater or lesser degree for most of my life. I just hope that it eases up a bit, so that walking isn't so uncomfortable.

I don't really know how I feel about all of this. Many of the same feelings I had when I wrote that last post have resurfaced, but I feel like I'm processing them better than I did two weeks ago, though I have been dramatically yelling "A part of me has died!" then having bursts of laughing and crying at the same time. Like I said at the end of my last post, this will pass. It will pass, it will pass, it will pass, and at the meantime I'll let myself enjoy the humour of the melodrama.

Thanks for reading,
Little Miss Autoimmune.