Sweat, Create, Meditate (30 Days of Yoga)

When I was typing out the title for this post, I accidentally wrote “Swear, create, meditate” and honestly, that would fit too.

A couple of months ago, I had a pretty big blip. The details of what happened aren’t too important, but it was one of those perfect storm episodes where my physical health, mental health and sleep disorder all went to pot at once. Which came first? I don’t really know, but once it started to go downhill, they all fed into each other. There were, of course, a few external factors – a stressful period of work/business, the change of season, some personal disappointments – but over the years, I’ve learned it’s less about what’s going on and more about how I respond to it.

There are a few things that always seem to help when I am not doing so well – movement, mindful creativity and reconnecting with myself and with friends. Of course, actually remembering to do those things, and then finding the motivation to get out of bed and do anything, are separate problems, but one issue at a time! Perhaps this blog post will serve as a reminder for me to do them next time.

I wanted to write particularly about the movement part of this today. While I know that exercise is really good for me when I am unwell, it can also be a bit of a risky business when things aren’t great. I’m having some body image issues at the moment, as I’ve put on a fair bit of weight over the last year. While this is kind of a good thing, after years of not absorbing food properly, it can also lead to some unhealthy attitudes and obsessions with exercise and weight loss. To try and counter this, I tried to hold the quote “Exercise is a celebration of what your body can do, not a punishment for what you ate” in my mind.

“Exercise is a celebration of what your body can do, not a punishment for what you ate.”

This led me to 30 Daysof Yoga with Adriene and The Fitness Marshall on YouTube. Adriene has such a peaceful, loving, gentle way of working that I found myself focusing less on the exercise and more on just taking that time to build my own emotional and physical strength. The Fitness Marshall dances are so much fun, it really does feel like a celebration and just a joyful thing to be doing, regardless of the physical benefits. I can’t dance in the same way I could pre-illness, but both the yoga and dance videos have proven to me that I can do more than I realised, and over the 30 days, I have regained strength and flexibility I thought was lost forever.

Of course, it wasn’t all smooth sailing. On day two, I completely broke down, doing far more crying than yoga because my emotional state was still pretty fragile from sleep deprivation, and there was one day where I had to drop down into child’s pose halfway through the practice, as my blood pressure was too low to continue. There were also a number of days where my assistance dog tried to join in, and I collapsed out of poses, laughing, as she licked my face or climbed over and underneath me (and one day where she bit my boob while I was lying on the floor– not sure what that was about!) But my intention for the 30 days was simply to show up on the metaphorical yoga mat every day, and I’m so glad I did. Taking that time for myself has really helped me to get back on track.

The good thing about this blip has been that even at the worst points, I knew it was temporary. When you’re in a bad place, be it physical, mental or sleep related, it can be really hard to see any way out of it. It feels like it will never get better, and more than that, it feels like it has never been any better before. The bad place is just all consuming. 

Being able to hold on to the insight that it is always temporary and will pass is a huge step forward for me, and one I hope I will be able to hold on to when the next (temporary) blip arises.

Thanks for reading,

Little Miss Autoimmune

Six Months on with Bindi

Strangers often come up to me and ask about Bindi. I mean, how could they not when she’s so cute? Most assume I’m training her, but when they find out she’s working with me, they generally have two questions:

How long have you had her? and How have you found it?

The answers?

Six months and Life-changing.

It’s hard to put into words how much of a difference Bindi has made for me. There are the obvious things. When my blood pressure is low or my joints are really sore, it’s such a relief to have her pick things up for me, so I don’t have to struggle down to the ground or risk passing out. When my legs are unsteady, having her beside me can keep me upright as we make our slow progress home. If I do end up falling, having her lying beside me with her head on my chest is a source of comfort and makes me feel less vulnerable. Also, she’s not been trained to do this, but she has somehow learned to pick up when my blood pressure is dropping and lets me know by biting on her lead or nudging my hands. She generally notices before I do, giving me time to sit down and avoid passing out. 

Sitting next to me, being my bodyguard after I fell down.

In the last few months, I’ve developed retinal migraines. These are episodes where I get lights and colours obscuring my vision for around 15-20 minutes at a time. As you can imagine, it can be quite scary not being able to see anything, but again, Bindi’s presence has been really reassuring. With the help of Julie from Assistance Dogs New Zealand, Bindi has been learning to do some guiding, and will now locate and take me to a chair when prompted. Knowing she can do this means I’m not so worried about one of these episodes happening while I’m out. I feel like we’re a team, and whatever happens, we’ll be able to handle it.

Of course, my original reason for applying for an assistance dog was my sleep disorder. This has also massively improved. I went from being genuinely scared that I was going to break my neck in my sleep, to having weeks where I don’t have any sleep disturbances. Having a person staying with me often made my sleep disorder worse, as their emotions and frustrations played into it, but Bindi’s inherently non-judgemental nature provides reassurance and comfort. When I do go sleep-wandering, I seem to do it in a less dangerous way now, as even if I’m running away from a nightmare, I factor Bindi into it. Whereas in the past I just got up and ran, often straight into a wall, my first thought now is to get Bindi away from whatever scary thing I’m dreaming. Since she’s reluctant to get out of bed in the middle of the night, it takes a while and gives me time to wake up properly. This isn’t something we could have predicted or trained her for, but it’s had such a positive effect regardless.

Then of course there is the emotional side of it. Having a soft little friend nearby at all times is just so heart-fillingly wonderful. I have so much love for Bindi, it’s hard to express. I don’t think there has ever been a time in my life before where I have laughed every single day. There is nothing like watching her play with her toys or do roly-polies down the bank at the park when she's off-duty. She does so many funny things and is just generally so cute it makes me smile every time I look at her. If I am ever sad, just sitting on the floor with her and playing is the best thing to make us both happy.

Trying to be a lapdog and reminding me it's dinner time (while she's off-duty obviously!)

Cuddling one of her toys

Now, all of that stuff is great, but this is a situation where the whole equals more than the sum of the parts. The difference she makes to my life is just so much more than this. There really is only one way to describe it – life-changing.

One of my neighbours commented that he was amazed by the change he’s seen in me since having Bindi. He works near the park we go to several times a day, and so sees us out walking. He asked if Bindi was for my anxiety, as he said he was really impressed with the visible change in my confidence. 

The funny thing is, I wasn’t aware that I looked anxious before, nor had I noticed a change in my anxiety levels initially. It took me a while to realise what it was he was picking up on. It’s like Bindi has freed up a part of my brain. In the past, a part of me was constantly occupied with worrying about the things I mentioned above – falls, dropping things, my blood pressure, my lack of sleep. Now, I don’t have to constantly assess whether my legs are getting unsteady or if I’m at all dizzy, or wondering what horrible dream I’m going to have tonight, because I know I have a safety net if something goes wrong. 

This is a cliché, but it’s like I’m been able to let out a breath I didn’t even know I was holding. I’m able to relax in a way I’ve never had the freedom to do before, and I’m so incredibly thankful to Bindi and Assistance Dogs New Zealand for that.

If you’d like to support the incredible work Assistance Dogs New Zealand do, you can donate through my Givealittle page for ADNZ, or consider sponsoring an ADNZ puppy.

Thanks for reading,
Little Miss Autoimmune

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.

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

She Chose Down

A couple of months ago, whenever anyone asked me how I was, I sent them this video.

I think most people were just confused by this, but at the time I felt it was the best explanation I could give for what I was feeling. Labyrinth is one of my favourite movies, and I've written before about some of the meaning I think can be drawn from re-watching Labyrinth as an adult. As a child I never realised that in this scene, Sarah actually answers the riddle correctly. Yet she still falls through the floor a moment later.

I screwed things up this year. I made a choice - seemingly the right choice - but things went badly. Then I made another choice, although this time it really was the wrong one, and I ended up in a massive dark hole. This is the unfortunate reality with chronic illness. You can do your research, listen to expert advice, weigh up your options… but there are still no guarantees.

A few months ago, after my sleep study provided a whole bunch of inconclusive results, I decided to trial a drug-free treatment option to help with my sleep problems. It seemed like a safe option - it's been shown in clinical trials to be more effective than medication at treating insomnia, and it was recommended by my specialist. Sounds like the right choice, yes? Unfortunately no. Not only did it not help with my parasomnia, it actually increased it, and the resulting lack of sleep caused a significant flare of my autoimmune disorders. So I made another choice, medication this time, and while it did improve the parasomnia symptoms a little, it also had a significantly detrimental effect on my physical and mental wellbeing. I ended up in more pain than I've been in since... well, probably since I very first got ill. I went from doing weekly dance classes to struggling to walk to the bathroom, and I experienced far darker places with anxiety and depression than I care to revisit. Luckily my doctor was on to it, and recognised that the medication had become dangerous for me. I couldn’t stop it immediately, but she gave me instructions on how to taper it off safely. In the middle of all this, my blood work also revealed an unrelated medical condition, which fortunately was treatable but caused some neurological symptoms and added to the depression in the meantime.

So with all that going on, you would have thought I’d have stopped the drug-free treatment as well right? Well… no.

The choices I’d made had gone so horribly wrong, I found myself stuck in a decision paralysis. Everyone – my doctor, my family, my friends, even my own body were telling me I needed to stop the treatment programme, and just do whatever I could to get sleep and recover, but I was so terrified of making yet another bad choice, I kept going with it. I also knew I needed steroids to get the autoimmune stuff under control, but weighing up the positives vs the likely side-effect of insomnia seemed too hard a decision to make. 

My doctor was on sudden and indefinite leave, which meant there wasn’t anyone there to step in and tell me what to do. So I did nothing. I sat back and watched myself get sicker, because it seemed safer than making yet another bad decision. This of course ignored the fact that avoiding making a decision is a decision in and of itself. 

Sticking my head in the sand was not my most grown-up response, and after a few weeks of freaking out and crying lots I had to push my fear aside, make some choices and try get my life back on track. I was lucky this time. Stopping the treatment programme helped immensely, and in a bizarre turn of events, the steroids actually made me sleep for nine hours straight instead of the more common side effect of insomnia. 

I went through cycles of guilt, regret, blame and anger over what happened. Was it stupid of me to continue with treatments that were clearly making me sicker? Yes. Do I wish I'd never made the choices I did? Yes. Is that going to change anything…? No. It was incredibly frustrating and sad to find myself in the position of watching my health decline, but I learnt something from this. I've always been afraid of what would happen if my joint pain was to become really active again, or if my teenage depression and anxiety were to return. And well... I've discovered that the answer is that it's pretty awful. But I’m not the person I was as a teenager, nor am I the person I was 12 years ago when my physical health problems first got bad. 

I found reserves of strength within myself that I didn't know I had. As utterly horrible as things were, I found ways to keep going even when giving up felt like a much preferable option. When I wasn't sure if I could keep going, I reached out for help and my incredible friends and family reached back. They were there, supporting me - in person, with texts and phone calls, or messages from the other side of the world – through even the worst moments. 

I've read that when Jim Henson, creator of Labyrinth was asked why Sarah falls through the floor after getting the riddle correct, he admitted he didn't know. Before falling, Sarah does say "It's a piece of cake" and there’s a pattern of bad things happening in the Labyrinth whenever someone says this, but other than that there’s no logic to it and it's not fair. I don't know why treatments that were supposed to be safe went so badly wrong for me. When you have multiple medical conditions there's more chance for negative interactions, but other than there's not really a reason. To quote Sarah again "It's not fair, but that's just the way it is."

My doctor is now back and I have a sleep specialist appointment coming up, so I will likely have to make some decisions about treatments soon. At the moment I’m still in the stage of wanting to reject everything, hoping to avoid making the wrong choice again, but I'm aware that didn’t exactly work out that well for me last time. Not seeking further treatment could be as detrimental as this whole episode has been, and these are things that I'm going to have to weigh up, all the while knowing that it's entirely possible that I may again make the wrong choice. 

I've come to realise that fear of what's happened in the past is not worth ruminating on, because I’m not the same me, and it will never be the same set of circumstances again. I'm still not be back to where I was before all this happened but I’ve learnt things along the way and I’m hopeful that my health will continue to improve. It's not fair that I have to make these kinds of choices, but I can either fixate on resenting that and the bad of what's happened, or I can hope for the best, and know that I will most likely survive the worst. 

You never know, maybe this time I'll choose up.

Thanks for reading,
Little Miss Autoimmune

So Many Sleep Disorders

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

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

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

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

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

Thanks for reading,
Little Miss Autoimmune


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

I have a doctor’s appointment tomorrow… and I’m scared.

I really would have liked this post to have a more succinct title, but this is pretty much what it comes down to. I’m seeing a sleep specialist tomorrow, and I am scared of ALL THE POSSIBLE OUTCOMES. :P

I’m scared he will have no idea why my sleep is so weird. I’m scared he will know and it’s something bad. I’m scared there won’t be any treatment options for me, but I’m also scared of treatment options because I’ve had such awful, sometimes life-threatening, experiences with medications and side effects over the years. I’m scared that trying any treatment could make my sleep even worse – it is entirely possible that it could – but I also know that if I don’t try, things could get worse anyway. I’m scared of the sleep disorder going away completely (as I’ve discussed before there are positives to it) but this winter things just got so so bad and I simply can’t go on like that. I’m scared because I’ve done a lot of work on myself in the last couple of months and have managed to get to a really good place, and I’m worried changing things could tip me back to somewhere bad. Mostly I’m scared because despite my best efforts to not get my hopes up about what this appointment will mean... I’ve totally got my hopes up, and I’m scared that I’m going to be crushed if this doesn’t work out well.

I know I’m not the only person who feels like this before appointments. When you have chronic illnesses, this thought loop is kind of just part of the process. For a long time I didn’t realise that, and thought I was the only one having such contradictory, sometimes irrational, thoughts. While I’d never wish illness on anyone, this is where it’s been really great to read other blogs, and have friends who are going through the same kinds of things, because you figure out that all the weird things you end up feeling are just normal reactions to an abnormal situation.

I could sit here and tell myself to be positive and say it’s all going to work out fine, but… well that’s not all that realistic. I’ve got no idea what the outcome of this will be, or even whether it’s going to be positive, negative or that good old beige in-between. I do know that I will figure out a way to be okay with it whatever happens. Because I always do.

Fortunately I have some pretty awesome friends, who’ve been supporting me through all of this, and one has even made an amazing offer to stay with me if I do try medications. Having someone there would really help me out with the fear of things going wrong, and would hopefully help to mitigate the effects if I do have a negative reaction. In the meantime I’m just going to have to deal with this appointment-anxiety. If nothing else, I do find it funny that worrying about a sleep-appointment is making me not sleep well. But maybe that’s just my twisted sense of humour.

Thanks for reading, 
Little Miss Autoimmune.

It's all going to be okay, I promise

This post is unashamedly for me. You can read it if you'd like to, and if you get something out of it then that's awesome, but if you're bored to tears and think it's a self-indulgent piece of nonsense... well, you were warned and kept reading anyway. :-)

When I last posted, I thought that yes, things had been bad but that they were now turning a corner. Well, it turned out things could get worse. I'm doing a lot better now, and I'll update about the medical/sleep disorder side of this at some point, but for now I'm just going to talk about the emotional side of this.

It is hard to be positive when crap things are happening to you.
It is hard to have good self esteem, when there are a lot of things that are wrong with you.
It is hard to believe that things will work out okay, when they keep getting worse.
It's hard to keep a sense of humour, and equally hard not to turn humour into a defense mechanism.
It's hard not to feel angry, and it's hard not to direct that anger towards yourself.
It's hard not to feel guilty for all of the above when you know other people have it a lot worse.
And it is hard not to feel that you are to blame for all of the above, because every inspirational quote you've ever heard tells you, it's not the situation that's the problem, it's your reaction to it.

You know what? Sometimes it's the situation. Sometimes life just keeps on kicking, and yes at some point you've got to take responsibility, take control of the things you can influence, and dig your way out. But before you get to the amazingly strong kick-ass point of fighting back against what life has thrown at you, it's okay to acknowledge that you don't actually want to have to fight. It's okay to acknowledge that yes, you are amazingly strong and brave and awesome, but it would be nice if your life didn't require so much strength and bravery. It would be nice if your life would stay on track even if you feel cowardly once in a while. 

Now I hesitated over writing that second point on this list, because I could hear the chorus of voices objecting to me using the word "wrong". But remember, this post is for me, not anyone else. There are things wrong with me, there is no denying that. There are parts of me that straight out don't work. I have a lot of other things going for me, but that does not negate the fact that there are also a lot of things working against me. I'm putting this out there, because I've come to realise that I have self esteem issues about the fact that I have self esteem issues. Why? Because when I express the fact that I don't feel good about myself, it is generally met with confusion and sometimes anger. When I am well, I can understand this. I can see logically that I have a lot of things going for me, and I can see that the "wrong" things do not take away from that. But when I am not well, I am so exhausted from fighting those wrong things that I cannot see beyond them. They are bigger than the edges of me and it does not feel like there is anything left around that.

To put it simply, Well-me realises she's fricken awesome. Not-well-me is so exhausted and broken down she struggles not to hate herself, and unfortunately Not-well-me tends to get more air time.

I am fond of making my friends promises that on the surface, I have no power to keep. Not promises of favours, but just promises that everything will work out okay. I'm not really sure what my friends think about this. For some of them it probably just makes them laugh, but for others I think it really does offer them some reassurance, because when I make those promises, I truly believe that it will happen. I truly believe that everything will be okay for them, and I give them every scrap of positive energy in me to help make that happen. This may all sound a bit like wu wu heebee jeebees, but, once again, this post is for me, and I'm okay with the fact that some of my beliefs are left of centre.

Yesterday I had this moment of feeling good, and like I had it all under control. In that moment I realised that it was all going to be okay, no matter what happened, in the same way that I know things will work out for my friends. This was a really wonderful feeling but I knew that I might not be able to hold on to it the next time things got hard. So I wrote myself a reminder:

Last night was another screaming-at-3am, injuring-myself-in-the-process, night-terrors type night. I woke this morning tired, sore and feeling unsettled especially as the night terror had related to a real-life thing that happened recently. But when I saw the note waiting for me, I knew that it was going to be okay, because Well-me had my back. And she's pretty awesome.

I'm not always going to be able to hold on to feeling good, especially when my spoons are depleted by lack of sleep or other health issues. But I'm going to do my best to try, and if all else fails I'll just rely on Well-me to remember for me.

Thanks for reading
Little Miss Autoimmune

Stress, Panic and Fight or Flight

A few weeks ago I had some really stressful and distressing situations crop up in my life. Like not the usual, run of the mill too-many-things type stress, but the blind-sighted, there was no way I could have prepared for this, really-serious type stress. They were all separate, unrelated situations but unfortunately they all happened at the same time. Added to that, they happened at a time when I was on two different types of antibiotics for two separate infections, and I also had a fair bit of the ordinary type of stress going on as well with a busy period of work, study and other personal commitments.

I handled the situations as well as I could, and for the most part they had good outcomes. The thing was though, it didn’t stop there. Several other upsetting situations cropped up, and it got to the point where I was actually laughing at how many ridiculous things had happened in such a short space of time. But because my resources were already low from dealing with the first lot of issues, I was finding it harder to find the spoons to deal with stuff effectively. And of course chronic illness is never a fan of stress so health problems soon joined the party. Increased disease activity in the form of weight loss, tremors, falls and pain were all now becoming sources of stress, as well as being caused by it.

I resolved as many of the situations as I could, and did my best to organise work and study to be more manageable. Unfortunately, none of this made as much of a difference as I would have liked. For a lot of the things I was dealing with, there weren’t simple solutions, and even when there were, my emotions were often still left raw afterwards. The worst thing though has been that my sleep disorder has been really out of control lately. Like REALLY out of control. I’ve had multiple nights where I’ve woken up screaming, and several times where I’ve injured myself, fallen or “blood pressured” myself trying to run away from night terrors. After having a particularly bad night where I fell several times and had to use my medical alarm, and then having an utterly hideous night terror which I couldn’t wake up from just a few night later, I’ve reached the point where I straight out feel afraid to sleep or even go to bed.

I’ve been feeling for the last couple of weeks like my life has just gotten too overwhelming, and I’ve been quietly reeling in panic trying to figure out what to do (naturally all while keeping up the outwardly calm on-top-of-everything appearance.) But then I realised, this isn’t about the upsetting situations anymore, nor is about work, study or any of the other things I’ve been attaching it to. At this point, I think I’m just stressed from being stressed. My fight or flight response has been triggered so many times recently, I’ve stopped allowing myself to relax in between and am constantly on high alert. My threshold for stress has also been lowered, so I’m getting triggered more easily anyway. The night terrors are a product of that, and the only way I’m going to be able to resolve them is to calm the f*ck down.

Of course that is easier said than done, but I have managed to find a few things that seem to be helping.I’m someone who tends to isolate myself when I’m feeling overwhelmed. I know this isn’t good for me, but I also just haven’t been feeling up to socialising all that much. I’ve been getting around this by making myself go to more shows, panel discussions, poetry readings and things like that – events where you don’t really have to talk to people, just go and listen. Of course Wellington being the type of place it is, just about everything I’ve gone to, I’ve run into at least one person I know and ended up talking to them, but that’s probably has been a good thing in and of itself.  I’ve also started going to weekly drop-in meditation classes, practicing relaxation exercises at home along with calming activities like knitting, and I’ve gone back to slow reading club. All things that help me relax and hopefully, with time, will start to calm my system and let it know it’s okay to let go of the flight or fight mode. In terms of the sleep, I’ve been trying strategies such as moving into my spare room instead of my own bed, and telling myself that I’m not going to sleep, just reading in bed so I don’t get as anxious about it.

I think the fact that I’ve realised this is about stress itself rather than any specific problem has helped a little in itself, as it’s stopped me trying to fix things that aren’t broken. At this point I can’t change any of what’s happened, I can only try to change my reactions to it. So for now, my sleep is still a problem. I’m still having vivid dreams and night terrors, and still scared of going to bed – it’s midnight and I’m writing this and talking to overseas friends online to avoid it! But I know that with time this will all settle down, I just have to not let it become another source of stress in the meantime.

Thanks for reading,

Little Miss Autoimmune