When The Bad Days Sneak Up On You

Xyrem has literally changed my life for the better. I am functional more times than not, and I’ve truly done a 180 degree over the last year. 

The bad days still happen and sometimes, they can happen unexpectedly. 

With financial stress building due to a series of more expensive purchases and an unexpected disappointment in the savings department; C and I are looking at a way to make it to the end of the month. We will make it, but it is extremely tight. 

I am working through the summer break, but my hours are very, very casual. I will be getting a raise next month, but my hours will still be quite casual. C has applied for work in his field and waiting to hear back is always the hardest part. 

So stress and anxiety have been quite the guests during this week. I’ve woken up from nights with seemingly non-stop nightmares; drenched in sweat and shaking. I’ve woken up to the dog whining because he drank all his water and hasn’t been feeling good during most of the week. 

I’ve been looking at the piles of dishes and clothes needing to be cleaned with exhaustion and panic, but managed to sweep the kitchen and wash the toilet because that’s all I can do. 

Finnigan is feeling better and I’ve gotten through a few loads of washing, but I’m still exhausted despite the naps I’ve taken every day this week.

I manage to guilt myself everytime I rest; by allowing myself to rest physically while provoking anxiety. I can sit for a while if I look for jobs because I need the income and I’m broke and how can I be so stupid as to go on a trip that was needed and deserved. I’m not very helpful to myself. 

C announced that because it was such a nice day out, we should go out and do something. Having woken up at 7:30am to the dog barking to be taken out for a walk after a night of constant nightmares, a week of stress, and the end of the month really giving us a run for our money, and the fact that I’ve been having diarrhoea all morning; I wasn’t feeling the enthusiasm. I dutifully checked out our town’s events because otherwise, were not doing much: nothing happening. Okay, we’ll go for a walk! 

We decide to take a shower first because we both smell like billy goats. I start to cry. C can tell that something is wrong and knows that I am not feeling anything today. I wailed and sobbed while apologizing profusely. 

C took me into his arms and held me tight. We talked about what was bothering me and whether or not it would be best for me to rest up. I was stubbornly refusing while he tried to convince me it way okay. 

In the end, we showered and got into bed. C reassured me that he wasn’t going anywhere and that he understands that some days are still tough for me. He made sure that I’d taken my meds, had gotten some food in me, and that I was warm before he kissed me on the forehead. 

Sometimes, the bad days are still bad, but with the love and support of my family things will be okay. 

Dog Therapy – Finnigan

A little ways back, my fiancé – we’ll call him C – said that we could get a puppy. We found that we were both in a space where we would be able to give our new family member all the attention it wanted and deserved. Narcolepsy has been doing well and I felt able to cope with taking care of a new friend.

My favourite name to call stray cats and dogs is Finn. I’m some sort of Animal Planet person mixed with a hint of Snow White. I love animals. They find me and I find them. C and I decided on what we wanted in a pet, what we would be willing to tolerate and what would send us running for the hills.

When C and I were looking at ads for dogs needing forever homes, we encountered a beautiful dog of about 5 years, named Finnigan; it was  meant to be. I filled out the application and a few days later received a phone call from the rescue asking questions about C and I, our living situation, and had a chat about Finn’s known issues. When everything went well, we decided it was time to meet Mr. Finnigan.

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First Visit

We met Finn and we instantly knew this was going to happen. We were warned of his anxiousness, and a tendency to nip and be protective. I have had a lot of experience dealing with anxious dogs so I immediately adjusted my presentation to Finn and taught C to do the same. We decided it’d be best to visit Finn a few more times for walks and play time before we moved onto the next step. We saw Finn once a week to take him on a long walk.

After a few more visits, Finn got to come check out our pad. This was just a day visit which would lead to a weekend stay and then a 30-day trial adoption.

During the weekend visit, we really found Finn was calming down. He wasn’t as nervous as he was previously during our day visit, but the transition between his previous family and ours was still extremely difficult on Finn.

After the 30 days, we would come together and see if this was the best situation for Finn, for C and I, and for the previous family.

Some things came up for the rescue and we haven’t been able to sign the official adoption contract, but Finn has found his forever home. We regularly send updates to the previous family and keep in touch with the rescue for all intents and purposes – Finn is our new family member.

Finn has been such a welcome addition to our family. His presence is felt immediately – whether by his fur, sheer size, or the fact that he’s such a lovable suck, I’m not sure.

Finn has helped me keep calmer, feel protected, get more exercise, and allowed us to extend our love to another creature. He is a shedding, burping, farting therapy for us.

Emotional Metamorphosis & Free Tattoos

Early this month, I contacted a tattoo studio in my city who offers one free cover-up tattoo to someone with scars from self-harm.

As a perpetually broke college student, free is my favourite number. I also have a tremendous amount of scarring on my left arm that I would rather see turn to something beautiful.

I contacted the artist knowing full well that other studios have told me it just wouldn’t be possible to tattoo over the scars. I contacted her knowing I may not be chosen or that, again, it just wouldn’t be possible.

A few weeks ago, I met the artist from Pretty In Ink. She was so joyful and immediately took me into the back. She felt my arms and noted the areas she wasn’t comfortable tattooing over, explained the risks, and spoke about the design I was hoping to get. We set an appointment and the artist, Jackie, told me she’d draw up a design with my original ideas and inspiration I’d shown her. I gave her free reign to do what she felt would work best, with the colours that worked best.

Although it may take several sittings, it may need touch ups, and the scars may swell initially; I want to document the experience when I go in for my appointment.

In exactly 10 days, I will have the scars I’ve worn for 16 years turned into a piece of art. I can’t explain how exciting this will be. I’ve learned to look past them, not to see them, to ignore the damage. Self-harm hasn’t been part of my life regular life, save for two slip ups, in 5 years.

I think it’s time to acknowledge their existence, to believe in their significance, and have the emotional metamorphosis I’ve sustained etched forever in ink.

 

Android Apps for the Chronically Awesome

I’m lucky to have been born in a time where technology is booming. Right at my finger tips are tools that make my days just a tiny bit easier.

Here is my list of apps available for Android for us Chronically Awesome folk:

Google Calendar

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This app helps me organize my appointments, my classes, shifts at work, and daily routines. It reminds me to get my medication, call my friends and family, and to take care of myself. I live by this app.

Sleep As Android (Pro)

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Sleep As Android – my knight in shining armour. This app is an all-in-one machine: Alarm with snooze limiter, CAPTCHA, QR, and NFC tag functionality to stop oversleeping; Sleep Tracker; Noise Tracker; Wearables integration; Tasker/IFTTT Intergrations; Mindfulness and Relaxing Sounds. The list actually goes on and on and on.
If this thing made my coffee in the morning, it’d do it all. I use this to maintain a regular sleep routine, see where my sleep is going wrong and figure out why, keep an eye on my deep sleep cycles, and wake up for those early classes.

Walmart Canada Online Shopping

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Walmart Pick Up is easily one of the most convenient and amazing services that has entered my small town. Having lived in a major city my entire life, it’s never really been necessary for me to do groceries this way even when it became available.

There are days and weeks when I physically can’t bear dragging myself out of the house, driving to Walmart, then actually doing groceries and get myself back home. Not to mention dragging all the stuff into my three-storey walk-up apartment and putting it away.  Walmart Pick Up actually gives me the ability to get all the groceries I need without sacrificing an entire day. And it can be done all on my phone! Huzzah!

Google Suite

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Google’s suite includes Docs, Sheets, Slides, Drawings, and Forms. The thing is – I’ve got the memory of a goldfish with Swiss cheese for brains. Google’s suite has been amazing for me because of my ability to forget to save things. It does anything and everything I need it to – from blog posts to assignments with Docs. With Sheets I can create spreadsheets for my budget, my symptoms, or make pretty calendars for studying. I can easily share and collaborate with anyone.

 

What are your favourites? I’d love to add some to my list!

 

 

What They DON’T Tell you About Taking Xyrem

I’ve been taking Xyrem for my Narcolepsy since June of 2016.  I’m almost a year into taking the medication. I want to talk about what I wished I knew the first month of taking Xyrem.

So, you’ve been prescribed Xyrem. You’ve talked to your doctor about the risks and possible benefits, gone through the telephone counselling with a representative of the Xyrem Success Program, a nurse, and spoken to the dispensing pharmacist. You’ve read the manual and googled furiously. Wikipedia said nothing of substance and you just want to know what it’s going to be like.

Here’s what I wish I’d known on my first night with Xyrem.

  • The stuff tastes like Poseidon’s salty butthole.
    • Yes, it’s horrid, but it gets easier to swallow.

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  • You’re not going to pass right out. 
    • You’re probably going to sit there fighting the drug. It’s going to take you ages to get asleep and you’re going to be dizzy.
  • You’re going to have the spins like you’ve drank 16 coolers

  • You’re also going to want to get up and move around because your judgement isn’t great. 
    • Don’t do it – or have someone help you out. I’ve fallen down stairs and smacked into walls and doors. DON’T UNDERESTIMATE YOUR NEED FOR ADULT SUPERVISION
  • Go pee before bed and just before your second dose
    • Get yourself into the habit – walking around on Xyrem sucks and it’ll keep you from worrying about peeing the bed.
  • You’re going to sleep horribly for a while. 
    • It really does take some getting used to – Xyrem sleep is different than regular sleep and for a while you’re going to hate everything.
  • Having your last meal two hours before you take your first dose is not enough time
    • It’s a guideline – play around with the timing. I find 4 to 5 hours is best for me and I fall asleep within minutes.
  • Your feet are going to feel like they are on fire
    • It’s normal, it’s cool, you’re feet aren’t going to fall off and they will be there in the morning.
  • You are going to sweat magnificently
    • Your blanket, comforter, flat and fitted sheets, and your PJs are going to be soaked. You will sweat profusely no matter the temperature or amount of fans in your room. Zinc helps with the sweaty smell so that you won’t have to change your sheets 18 times a week.
  • Your whole body will ache after a while
    • As far as I can tell, there are two reasons for this: being in a deep sleep, you may not move if you’re in an uncomfortable position and Xyrem saps your magnesium which can cause nerve pain. Make sure you’re falling asleep in a comfy position – i.e., not with your phone or with the spine of your book on your face, or with your legs twisted up. – and take some magnesium supplements (bonus: some compounds come with Zinc!)
  • You might turn into a drunk 6-year-old
    • It’s actually really funny.

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  • Your routine owns you
    • There’s no way around it. Go to bed at the same time, but more importantly – wake up at the same time each day. Dinner is also at the same time, snacks are at the same time, meds at the same time, schedule your naps for the same times. This will be your saving grace. Be rigid as you need to be at first, and loosen it up accordingly.
  • I found a smart-watch or an activity tracker to be really awesome for me
    • I used to own a Pebble Time which I used to track my sleep, get my alarms, and track my activities. I upgraded to a ZenWatch 3 recently and it does wonders to see when my sleep is good, what ends up screwing my sleep up, and track how I feel. An el-cheapo FitBit or other activity tracker might help you keep in your routine and stay on track.

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      Deep sleep with 7.5G

  • You might get really sensitive to sound, light, and touch
    • I found this out when my fiancé used his phone or laptop while I was trying to sleep. Click. Clicky-click. Tap-tap-tap-click-tap-tap. The sound drove me bananas and the light was even worse. While I was asleep, he’d try to rub my arm or my back and I would flat-out kick him. Even now, I have to have the T.V. at a very specific volume and brightness setting in order to have the perfect combination of noise-to-light ratio for sleep.
  • You might want to have a beer with your friends once in a while
    • Or you might not miss alcohol at all. Either way, drinking while on Xyrem is a huge recipe for disaster. If you have a beer with your buds or go drinking to celebrate an achievement – do not take Xyrem. This can kill you.
  • Want to take some Nyquil for a cold? DON’T
    • Chat with your pharmacist to find out what you can and cannot take while on Xyrem. A general rule of thumb is: if it makes you sleepy, don’t take it.
  • Medic-Alert bracelets are totally worth it
    • I never thought I’d need one, but let’s face it: accidents can happen and it’s better to be safe.
  • You’re going to have those damn syringes everywhere
    • They are good for impromptu water fights!
  • Wash your med cups once in a while
    • They can get pretty icky by the end of a month. Rinse them out once in a while, you savage.
  • You’re going to wake up at 3 am ready to punch the day in its face
    • You’re going to be ready to take on the world at ridiculous times of the day. It’s amazing to see the change, but it sucks when you have to get up at 7am for work. Have a little stretch, a snack and some water, and get your butt back into bed. You’re still narcoleptic, you’ll fall back asleep.
  • Cold water or Crystal Lite in your med cups makes for an easier shot of Xyrem
    • If you’re really having a hard time stomaching the doses, try super cold water. Refrigerate a bottle of water and make that your dilution water.
      If that’s not enough, Crystal Lite has no sugar to disturb the effectiveness of Xyrem. Mix your Crystal Lite in a water bottle and put it in the fridge for your doses – dilute the Xyrem with the juice! Voila!
  • Don’t get into the habit of snacking after the Xyrem hits you
    • I’ve gotten into the habit of having a snack right after I start feeling the meds. For the love of god, don’t do it. I turn into a whiny, drunk 5-year-old and all I want is a cookie. Now, I have to train myself out of it.
  • Remember puberty? Acne, pimples, and blackheads! Good thing you’re going through it again
    • Breakouts are back so it’s time to get yourself into another routine! A skin-care routine! I love Neutrogena’s Rapid Action Daily Leave-On Mask and Cleanser.

Narcolepsy – What is it?

Whenever I mention my diagnosis to someone I usually get responses such as:
“Oh, yeah. I had that for a while.”
“Oh, that’s cool! I also have a hard time sleeping.”

Let me just clear one itty bitty detail: I have Narcolepsy – not insomnia. I’m fantastic in bed. I can sleep for days at a time!

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To understand sleep disorders, it’s best to understand the mechanics of sleep.

Everyone experiences different kinds of sleep: Rapid Eye Movement (REM) Sleep, and Non-REM sleep. We pass through a fun cycle of phases going from lightest sleep, Non-REM 1, to the deepest; Non-REM 4. After 90 to 120 minutes of cycling through the Non-REMS, we go through a phase of REM Sleep and the process repeats itself.

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The way I typically explain my diagnosis to others is to have them imagine that they’ve been up for 3 days straight. They are in full-blown self-deprivation – with REM rebound, drunk-like cognitive states, irritability and mood swings, micro-sleeps, the works.

Now, everyone goes through this at one point or another. So what’s the solution?
Right. Sleep more and resume regular activities! You may sleep for 18 hours for the next few days to regain your sense of wellbeing and away you go!

Imagine that those 18 hours don’t help. In fact, they make the exhaustion worse. You wake up more exhausted every day. There is no escaping the feeling that you’re about to collapse from absolute, crushing fatigue.

Welcome to Narcolepsy.

Basically, narcolepsy is a condition that affects a sufferers ability to regulate their sleep-wake cycles. Your body eats away the neurons in your brain that allow you to decide when it’s lights-out. These neuropeptides also play a role in your appetite and metabolism.

It is a sleep disorder with a neurological auto-immune cause that is more than likely genetic. It usually shows up in adolescence or early adulthood and there is no cure.

Narcoleptics deal with excessive amounts of REM sleep and not enough restorative Non-REM sleep. This combination of light sleep stages makes us incredibly susceptible to interrupted sleep and fun parasomnias such as REM-Sleep Behaviour Disorder.

The hallmark symptom of Narcolepsy is a symptom that is exclusive to this disorder: Cataplexy. During REM sleep, your muscles are paralyzed to inhibit you from chewing on your pillow when you’re dreaming of a juicy steak or otherwise acting out your dreams. Essentially, cataplexy is a manifestation of this muscular paralysis that happens during the day when you’re probably not going to want it to happen such as during periods of laughter, great surprise, or anger.

Triggers for cataplexy differ from person to person and its severity can lead to a full-body collapse or some minor facial drooping.

Speaking of paralysis, another common symptom is sleep paralysis! Usually accompanied by either hypnopompic or hypnagogic hallucinations.
Hypnopompic simply means “while waking up” and hypnagogic, while falling asleep.

My hypnagogic hallucinations tend to be spiders.

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In 2015, I had to drop out of university because my symptoms had gotten so bad. I was no longer allowed to drive with the threat of having my license revoked – but since I did not have a car at that point, my doctor and I made a deal that he wouldn’t report me to the ministry of transportation if I promised to not drive at all.

At this point, I was still undergoing tests to determine my diagnosis. Having been on REM suppressing medication, my cataplexy was moderately under control. Unfortunately, this made the diagnosis a bit longer.

The Diagnostic Process

For the average narcoleptic, diagnosis usually takes about 10 years from symptom onset. That is a huge amount of time to deal with the effects of this illness.

Personally, my symptoms likely started at around age 9 or 10, but I was diagnosed at age 22: a whopping 12-13 years.

At 21 years of age, I was referred to a sleep clinic due to a huge amount of sleeping issues that could no longer be explained simply by medication side effects. The sleep clinic called me in to do a polysomnography – a sleep study. The technician attached me to several monitoring devices – an EEG, ECG, muscle monitors, O2 monitor, and had cameras and audio equipment to monitor any strange sounds or movements.

After my sleep study, I was brought back in to discuss the results. To everyone’s huge (non) surprise – I wasn’t sleeping well. The doctor took a more detailed history and explained that they would have to do further tests – but at this point it was either narcolepsy or upper airway resistance syndrome.

The doctor booked me for a test called the Multiple Sleep Latency Test. This is a test that takes all day. You’re asked to come into the clinic in the morning – no coffee, of course – and they set up the monitoring devices again. You’re then asked to take a 20 minute nap. A technician will wake you up and threatens to yell at you if you fall asleep for the next hour – jokingly, of course. After the hour, you go back to sleep for 20 minutes. This happens 4 or 5 times. They measure the amount of time it takes you to fall asleep and when or if you go directly into REM sleep.

Fun fact about the MSLT – it sucks. Seriously, I felt like I was being tortured that day.

When the doctor had me come in to discuss the results – he told me that I was in the extreme category. My physical and mental abilities were significantly impaired. I cried in his office – I told him I felt like I was dying; I was sleeping for 22 hours most days at this point. I drank energy drinks and fell asleep in buses, in hallways, everywhere. I couldn’t get groceries because the energy it took to walk to the store meant I couldn’t cope with actually being at the store and getting home.

It was then we discussed the treatment for Narcolepsy.

How do you deal with this?

Narcolepsy has no cure, but there are ways to manage. Uppers and Downers are the main treatment.

Newer stimulants such as modafinil and armodafinil are the usual first line of defence. Then a CNS depressant called Xyrem is introduced to consolidate sleep cycles and improve interrupted sleep-patterns.

Finally, environmental changes such as prescription naps of about 30 minutes throughout the day can be incorporated, as well as, moderate exercise!

 

 

 

 

 

The Club

In an effort to get myself working in the field of social services — I decided to take up a casual position in my city’s Methadone Maintenance Therapy Clinic.

I absolutely adore working here. I love my clients, I love the work I do and I love being able to see people thrive. Although I understand the need, I don’t like having to monitor clients surrendering samples. I’ve been on the receiving end and it really is exposing.

I’ve been known as the perpetually upbeat and cheerful kid with the curly hair. I’ve been told that my clients could eat me for breakfast, but there’s a breakdown in the resolve when I have to watch people pee.

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I had recently begun wearing short-sleeved shirts to work because it’s summer. In the wintertime, I tend to snuggle up in sweaters and cardigans so my colleagues and clients haven’t really been able to see the extent of the scars on my arms.

Now, I haven’t self-harmed in nearly 5 years. The scars are faded white and I barely even notice them, but others do. So here I am, Tuesday morning, — I might add, late for my shift due to a slew of terrible nights of sleep and an adjustment in my medication — half-awake and I notice those little millisecond-long pauses. A couple of clients’ eyes went huge as, I imagine, they took in the decades of self-abuse.

That day I received a few extra smiles and some nods in acknowledgement; almost in solidarity — a really weird club for those who understand… who get it.

I know that in my field I play with a double-edged sword. On one hand, I really do get it — the pain, the anguish and desperation. On the other, who am I to advise anyone when I’ve painted my arms with the same blades.

I haven’t encountered the latter yet, but I’m prepared.

Until then, I enjoy the smiles and I nod back to the members of the club that I wish on not even my worst enemy.


Naloxone can save lives — Get Trained — Get Ready

Chronically Awesome – A Journey

I hope to bring you on a journey: my journey! It has a lot of twists and turns, but is mainly a lot of boring crap shoved in to fill the gaps.

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This is my journey in life as a twenty-four year-old, narcoleptic, traumatized, unicorn fanatic who is just wanting to make a dent of change in the world. Follow me as I finish my final year of college as a chronically sleep deprived (and chronically awesome) student.