Summer-Time Blues

I have been away from my keyboard for some time. Working, enjoying the summer, getting some much needed rest and just haven’t had much time to sit down and type it out.

I’ve been missing this outlet. This blog allows me some time to reflect on my not-so-rational thoughts, and process situations and all that other self-care bullshit. So, I’m back again because my brain has decided to go on an all-out “let’s make Lexi feel like shit” parade.

To preface this, I would like to mention that I had been out of Xyrem for exactly 4 days. My dose had increased, I didn’t remember when exactly I opened the last bottle so, woops, no Xyrem for 4 days. This also means that for four days, I slept horribly, had little to no deep-sleep, was cognitively defunct, and was a little bit of a cranky-pants.

It has also been hotter than Dante’s 9th Level of Hell. Our window A/C is struggling to keep up, and the neighbours downstairs like to have all of their lights on and windows down at all times. It gets very hot. I do not tolerate the heat well, especially at night.

Finally, my uterus is twisted into a knot. I am into my third day of Shark Week and I’m still cramping, still having joint pain, and still not loving life.

The reason I bring this up, is I like to do a basic check-in of why the fuck my brain is being a little dick. Generally, I ask myself: ‘are you hungry?’ ‘are you tired?’ ‘are you sick?’ ‘are you unbearably hot?’ ‘is your living room a disaster zone?’ and if any of those are the case, I try to resolve those before I go on ringing some alarm bells.

I have been dealing with excruciating exhaustion, stupid summer heat, a punishing menstrual cycle, and my living room is an abomination that I have been procrastinating on for the last several weeks. The fatigue is getting worked on, we’ve managed to lower the temperature in the apartment a smidgen, day 3 of Sharkweek is better, and I have started tidying my living room.

Still, my brain is trying to convince me that everyone I love and care deeply for is going to leave.

Since I’m not the only person in the world that experiences tiredness-and-heat-related grumps, my fiance and I have been having some minor tensions that have needed to be resolved. Misunderstandings are easy to clear up right off the bat – oops, I didn’t mean to react that way, I thought you were saying xyz. I’m sorry, Lexi. *hugs*

My issue lies in my complete inability to handle anger from those I love. It leads my brain into a spiral of abandonment scenarios that I can’t squelch fully. I generally will seek reassurance, but that can come with its own consequences. For instance, my fiance might start rattling off the reasons for why I’m asking for reassurance.

I’ve had to ask for reassurance many times over the last week, mainly because of all the little factors that have lowered my tolerance for all sorts of emotions. I’ve also decreased my ability to regroup internally and deal with shitty thoughts and feelings.

This is common, this is not bad. I didn’t think about how my own reactions might affect those I care about the most in my quest for trying to somehow predict future abandonment. I’ve been a bit of a pain in the ass. And that’s not fair, either.

I explained to my fiance, that this is not him and that I’m sorry he’s having to reassure me so much. This is my past taking the opportunity it sees in my vulnerability, not an actual fear based in reality.

You see, everyone left. Every. single. one. But that’s not true. Not everyone. A lot of people left, but some I chose to leave behind, too. Some were friendships that drifted, some were moving and some had other priorities, and sometimes I did, too. This is not abandonment, this is life. This is the progression of relationships at times, and it’s okay.

Some left me in the worst possible way at the worst possible time, and that sucks- but not all and not even a majority of people.

C and I are allowed to fight, get annoyed, be annoying, get into silly arguments – we are not doomed because of it. We strengthen our relationship by communicating, resolving disagreements, compromising at times, and always being there for one another. We can’t always agree on everything, and my memory might make me forget things a lot, but we work together to bring each other up and we become better versions of ourselves for it.

 

 

 

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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.