As most of you will have noticed; recently I’ve been rather quiet. I haven’t been writing and I’ve been pretty slack on the social front too. However yes – I am still alive.
I’ve been on Facebook a bit lately though, and I’ve noticed a few posts that have really grabbed my attention.
Since I began blogging I always had the intention of staying as honest as possible. I’ve shared the good, the not so good and the ugly on several occasions. It’s easy to share how our week is going when it’s going great, right? But why is it that when we find ourselves facing another one of life’s ugly challenges we kinda freeze up and go silent? Why is it so hard to admit, “yeah, life sucks a bit sometimes,” to an audience of totally understanding human beings, whilst dropping this flawless facade for long enough to just prove that we’re still humans too?!
I think it comes from pride, or the stubborn need to be the strong one. The girl who carries on through it all with a smile on her face. And for me perhaps it comes from this unnecessary urge to be independent when I need to just step back sometimes and realize that I do have a whole lot on my plate, and sometimes I need a little help, or at least a break!
So the kinds of posts I was reading were the type that make you go, “Oh, wow! Someone admitting an addiction problem?” Or, “Woah, this guy’s depressed? But… He’s open about it?!” – Some may think these kinds of posts are just bait laid out in the sea of social media to catch attention, but hey, the way I see it; if it’s going to change someone’s way of thinking, raise awareness, or save a freakin life, then why the heck not? I think people should most definitely be open about all sorts of struggles they’re facing. Recovery and trust and all that good stuff – they all begin with good, honest communication, right? …So… why aren’t I speaking up?
Like I said, my reason for trying to uphold this strong, happy image of myself could be a result of many different things, but let’s not focus on that for now. The thing I’m trying to get at is that it’s time we all built up the courage to admit our wrongs, our weaknesses and our struggles, and to connect on a deeper level of understanding, through the good and the bad. We need to learn to give ourselves a break, and a bit of recognition too for all our achievements, big or small. For many, getting out of bed in the morning, or making that choice to live another day is, on its own, a huge achievement – I think it’s important we remember that.
On that note, I’d like to share with you all that since February earlier this year, I guess you could say I’ve been pretty sick. Specifically with a disorder of idiopathic hypersomnolence. Haha sorry – just wanted to use that big crazy word. Basically, I’ve been experiencing excessive tiredness, among other annoying symptoms. And for totally unknown reasons. Now, by “tiredness,” I don’t mean the typical mum – with – a – toddler – type – tiredness; tired to the point that I throw up if I haven’t had a nap before 4:00pm. People have commented so much lately on how skinny I’ve gotten. Usually I just say “thanks,” because it’s easier than telling them the truth – “I’m often too tired to even eat, which has resulted in this unhealthy, unintended weight loss and I hate feeling so fragile and sickly.” Yeah, I’ll look great in that wedding dress, but I wont feel great until my health is back on track.
At times it has been totally terrifying. One of the symptoms is sleep paralysis, which a lot of you have probably experienced at least once. It’s kind of become a regular occurrence for me, probably because I’m always so exhausted. Once I watched Little Shot smash a glass in front of me and I couldn’t even wake my body enough to move him from the clearly dangerous situation, even though my brain was awake and fully aware of what was happening.
The tiredness is almost uncontrollable. Plenty of times I’ve fallen asleep in totally inappropriate settings, and I’ve woken up feeling so embarrassed. It’s happened while I’m talking to people too, and can get rather awkward. Most days when I’m just at home I’ll usually fall asleep at least three times, and I’ll spend a lot of my day sleeping, or at least in a totally relaxed state, as I don’t have the energy to do much at all. It’s rather frustrating; I’m such a lover of life, but this illness has made day to day living feel like a tiresome chore and has held me back from chasing so many dreams.
Sometimes it’s been really upsetting and totally embarrassing. Another symptom is the inability to wake myself from sleep. Not even to the sound of Little Shot crying, which is a totally natural mother instinct, and not even when my body needs to get up and go to the toilet. (Yep, definitely something you share with the public, right? Haha well hey, I did say I was going to be honest here!)
Another downside is this micro – sleep thing I do a lot of. It’s where you appear to be fully awake and functioning, but you’re technically asleep. Just last night I burnt my hand by falling asleep while making a hot water bottle. Unfortunately, falling asleep for me only takes a few seconds, rather than the normal seven – or – so minutes.
And don’t worry – we have made sure Little Shot is safe and has the care and attention he deserves. With Big Shot working full time, my generous sister left her job during the weeks to stay with us and help with keeping an eye on him in case I fell asleep. (See! I told you she was amazing!)
Before any of you try suggesting natural alternatives to medicine, or exercise and diet changes, or prayer, or whatever else you can think of – stop. I appreciate the thought, but honestly, I’ve tried everything.
At first I was trying three injections of B12 per week and cut right down on breastfeeding, hoping to boost my energy, and I joined a fitness class and adjusted my diet more than once. I was hoping to get some sort of boost from this but it just wasn’t happening.
I haven’t had a single episode of psychosis or dissociative disorder since 2013 and emotionally I’ve been stable and the happiest I’ve felt ever since, however with a long history of mental illness it’s highly possible this could be related. I spoke with numerous counselors and psychologists who all agreed that what I’m going through is totally out of he ordinary for me and not my regular mental pattern, and so the decision was made to consider other physical possibilities.
I’ve been praying so hard every day to the same God who I have seen perform countless miracles around me; the same God who I believe has the power to cure any illness. My God who loves me and wants nothing but the best for me, and yet day by day I’m getting sicker. It’s been a real test of faith, but if there’s one thing I’ve learnt, it’s that you won’t have much of a testimony without some sort of test involved. Without a test your testimony is just an imony. Or something. I dunno.
Anyway, a few months ago I ended up at a neurologist to try and get some answers as to what the heck is going on. After asking me all sorts of questions and getting me to poke out my tongue, hop on one leg and all the rest of it, he concluded with his diagnosis of narcolepsy, with a side of mild cataplexy. (This thing where your limbs go floppy sometimes, usually as a reaction to being frightened or when you laugh. It’s something I’ve actually had for years, but always assumed was from a car accident when I was younger.)
After being stuck in line on another long waiting list I was referred to a sleep clinic, and then another waiting list for a sleep lab, which is where I’ll be staying tomorrow for my polysomnograph, and my multiple sleep latency test the next day. They’re basically going to hook me up and monitor my brain, heart, breathing and limbs and watch what my body is up to before and during sleep, specifically REM sleep. This should hopefully give us some answers, and a clearer idea of which step to take next.
Unfortunately medication will mean the end of our breastfeeding journey, which I have kind of been setting Little Shot up for, because even though I’m usually the last to stick my hand up for meds, I’m at the point now where it’s kind of my last resort to an immediate solution. As sad as it sounds, I haven’t been able to be alone with my son in so long. I haven’t had the energy to play with him, and I would love to go back to feeling like a real mum again. And as heartbroken as I will be to stop breastfeeding, I’ll do whatever it takes. I can’t be the best mother to my son until I’m the healthiest me I can be and realising that has been a huge challenge.
This experience has been a really tough one, but it’s all for a reason. I don’t want to make out that I’m suffering or worse off than anyone else by any means, but I know I am blessed through it all, and things will get better. It’s all for a reason.
So thanks for listening, folks. Hope it gives you all a bit of understanding as to why I’ve been so vacant. I’ll keep you updated anyway. Prayer would be pretty sweet right now. Much appreciated.
Po mārie, I’d better get some sleep. All this sleeping is tiring work, after all!