More Me Now

I am terrible at remembering to refill my MS medication prescription until the day I take the last pill I have on hand. Luckily, Rexall remembers for me, so I can usually just go in day of and it’s ready to be picked up.

I did such a thing last night, but the additional cool part was that – for the first time – the pharmacist ringing it through asked how the meds were working out for me. He asked how it was going. We chatted about it for an extra few moments before I headed for home. No one’s ever asked me that before, outside of my neurologist. It was nice.

I haven’t posted on FB since last week, the day after the election. Not even this blog goes up on there anymore. I go on just to see my memories for each day, especially on days like today. It’s the sixth anniversary of the day I had to have my Kate kitty put down, and while the memories in my feed today are ultimately sad, there’s also a lot of good ones, because I’ve posted a little tribute to her each year since.

Well, not this year. Or not on FB, at least. I did post a little something elsewhere, though, including some of my fave photos of us together:

kate-1997-2010

The thing I’ve noticed about being on FB less in this past week is that I have far fewer interactions, and since this blog isn’t being posted there, I feel sort of liberated and like I can be a bit more open about things. We’ll see how long that lasts, of course, but for the time being, I actually feel like expressing a bit more on here than I have in the past. We’ll see. We’ll see.

Yesterday, I saw the dental surgeon guy who did my gum surgery. He was very pleased with how the healing is coming along – I think pleased with himself most of all, but pleased nonetheless. He approved me to go ahead and get the crown, so I’ll set that up with my regular dentist very soon. I look forward to paying for THAT over the next year or so of my life. Haha

My work day yesterday was ridiculous. A lot of entitled attitudes walking around here, it seems. I’ll no doubt complain about that another time.

Today is almost as bad, but a little over the top because my polar bear is out at the Toronto Zoo for the first time in 4 years, and I am stuck here instead of spending time with him again at last. The other thing is that I’ve been feeling so disconnected lately that I am sad about how little I’m affected by all that right now. I should be more excited to see him. I should feel more things in general. Instead I’m still just…swept away.

I’m sure that’ll change whenever I do see him again. It’s just sad that I don’t feel like I have even that to look forward to anymore.

Another FB memory that popped up was one I’d kind of forgotten about. I’d been challenged one time to list a number of things that most people wouldn’t know about me. It was fun to go back and re-visit that, so I thought I’d share it again here.

So here you go – 11 things about me that most people don’t already know:

  1. I am obsessively partial to odd numbers. I’ll …have to find a way to make my biological imperative overlook this list of 8, for example. (Note: I was later challenged by another friend so was able to add 3 more to the original list, to total 11.)
  2. I had a spoon collection when I was younger, thanks to my grandmother, who gave me her Charles and Diana wedding spoon to start things off. I’m trying to figure out where I put it, now, actually.
  3. When I was little, I wanted to be a cowboy when I grew up. Then I wanted to be a Jedi. Finding out I could be neither was almost as disappointing as finding out that my parents couldn’t give me the older sister I’d asked for.
  4. I was painfully shy as a child, but then I figured out that shy people got made fun of, so I faked it in the hopes that I wouldn’t draw attention to myself. Today it’s just as hard to leave the confines of my apartment, but I am way better at hiding it, and I bet no one has any idea now. Oh…crap…
  5. One of my biggest fears as a kid was giants. Sweetums terrified me. Technically, I’m still nervous around things that are bigger than me, but am able to be awed by some of them, as well. Like whales and bears.
  6. My mom says I used to cry every time I heard the theme song from the Littlest Hobo. I actually still get a little misty-eyed over it now. Ah, doggies.
  7. My bedroom walls and ceiling are partially covered with glow-in-the-dark stars. I’m 41 (Edit: 44 now), and I love them. I purposefully charge them up every night before going to bed, so I can fall asleep in my tiny universe. At least the ones Flynn hasn’t peeled off. I had to move a bunch up out of her reach. Ah, kitties.
  8. I was Valedictorian of my high school graduating class. There were, like, 11 of us, I think, and I made the least stink about being nominated. My class had the coolest idea ever for a gift – we were creating a time capsule to be put on display and then buried on school grounds to be dug up in 50 years or so. We had a whole list of stuff we were each contributing, but in the end, we never finished it. So our gift to the school was actually nothing at all, which sort of sums us up rather well, really.
  9. I have – and still listen to – the first Alanis album on CD. Not Jagged Little Pill – the FIRST first album! “Never too hot, never too cold, ya take your best shot, too hot to hold! Never too young, never too old….you gotta go for GOLD!!!”
  10. I really really really miss plugging quarters into video arcade machines. I miss going to the arcade and playing my faves, usually with my brother. And I absolutely miss playing games that you can’t really “beat” no matter HOW good you are. Eventually, that little frog is going to take a misstep, or there will be too many asteroids to deal with, or the Pong ball will bounce faster than you can react. I miss that.
  11. My walls, like many pre-teen and teen girls, was covered in pinups of my fave celebs. I was a regular reader of Bop, 16 and Teen Beat magazines, and was provided with more than enough fodder for my obsessions. The biggest one – and I’ve never really out-grown it – was for Ricky Schroder. Others included Ralph Macchio and most of the 80’s Menudo line-up. And the entire cast of Outsiders. And Mark Hamill. But mostly, I was and am all about the Ricker.

Finally, I’ll end with a few shots of the supermoon I took last night. ‘Cause why not, right?

Antidepression Quandry

For the past several months, I’ve been actively trying to wean myself off of my antidepressants. It’s been going quite well, which is why I’ve been keeping it up. Slow and steady, as I am in no rush. I just feel like it’s time to get off them, and since I know from previous experience how difficult that can be, I figured I would take my time, and just aim for an eventuality. I don’t really want to be taking them for the rest of my life, if I can help it.

I’d forgotten how physically sick I would feel when I changed the consistency of taking them, so I went back to super steady, and made incremental changes as I went along. I keep forgetting when I last took one, so sometimes I still don’t feel great, even though my weaning period has been going on for a long time.

As far as depression goes, however, I’m still feeling pretty balanced. That, for me, has been the main thing to keep an eye on. Even when PMS-ing, though, I’m thus far able to differentiate between when I’m legit upset by something versus weeping unnecessarily hard over a commercial on television.

I mean, I have a new TV now, so everything looks splendid, but still…I can tell when I’m being hormonally over-sensitive, most of the time. So that’s good.

I’m wondering now, though, if I should start taking them regularly again, even just at the lowest dose. I find my ability to focus on one thing at a time is suffering a lot lately, and it occurred to me this morning that it might actually be due to taking myself off antidepressants. It was easier for me to direct my focus when I had something to take the edge off. Is it something I can learn to do for myself, if I keep working my way off of them? I actually don’t know. I’m not entirely sure I ever could. It’s fine on the surface – things still get done, and some of them even get done well. I write everything down now, anyway, because I have trouble remembering things since I started on these MS meds. So keeping track in alternate ways helps me, and is a habit I’ve developed anyway. But it’s frustrating on the inside. I feel almost overwhelmed sometimes, and more often now than I used to. Again, maybe I can learn to focus better, anyway.

But maybe not.

The other point in favour of going back on them more regularly is how, like…not exactly over-sensitive, but I’m having a lot more anxiety now, and as such I am getting much less sleep. I’m constantly thinking about things, and going over things in my mind. That on top of the usual MS fatigue I’ve been experiencing the past few years is making it harder for me to NOT break down and cry about even the smallest things.

Again, maybe in time I’ll learn how to quiet my mind naturally and get better rest. But maybe I won’t. Maybe I never really could. I’m not actually sure.

For now, I’m not really going to make any decisions. I just started thinking about it this morning, and since I’m definitely PMS-ing (bring me salt!) right now, I may as well wait until I at least have whichever faculties I usually have about me again, and go from there!

Mind Reels Activity

Holy crap guys! So much happening on the Mind Reels front this morning!

Did a little promoting of our Patreon page, as per usual (http://www.patreon.com/TheMindReels – please share – every little bit helps!) and then moved on to other more immediate things.

Am just a step away from confirming the date for our next radio play, which will be happening next week, barring any unforeseen circumstances. I heard back availability from one person, then three more in a row said they were also free on those evenings, so suddenly I have a cast, and now just need to confirm that the studio is available before I cement the details! So excited! We’ll have a couple of new people and some who have done one before, but I don’t think any of them will have really done any together before. Maybe two of the guys. Anyway, I’m super stoked – we’re doing an episode of Ellery Queen this month, and it’s ridiculous! I love these old radio plays. They are so bad they’re great! It’s got to be one of the most routinely fun things I’ve ever done, and I hope this project has the legs it needs to keep going for a long time!

And speaking of projects, we just put the wheels in motion to start yet another one! This one will hopefully expand our content, as well, but in another slightly different direction, which – if it works out – should be amazing! While the radio plays act as a branch of our podcast, this new project will hopefully become a long-term branch of our blog. I am so insanely excited about it, I can barely contain myself! I’d been distracted from it for the past couple of weeks, but as soon as I started working on it again, the initial excitement came rushing back, and I couldn’t wait to take the first steps! Now I’ve started taking them, and while it’s a matter of waiting to see if there is any response from the parties I’m reaching out to, it’s hard not to kind of hold my breath in anticipation. I’m aware that there could be no response at all, or negative responses – I’m aware this might not take off even a little bit, let alone the way I’m hoping – but at the end of the day, I’m a dreamer. I’ll keep dreaming this until it either becomes a reality or falls on its face. I’ll keep believing in the possibilities until I have no choice but to concede defeat.

As well, we have a tentative interview coming up next week, but the only time it can be done is after I have minor-but-painful dental surgery, so it’ll be interesting to see how THAT goes! I was kind of hoping to go home after, walk the dog and go to bed. Instead, I’ll likely be heading downtown to try and hold it together while chatting with one of my favourite people about one of my favourite shows!

How do I get myself into these things?

The first time I did an injection of Avonex (the first MS meds I was taking), I had no idea what the side effects would be for me. Or, I knew the likelihood, but not the severity. So naturally, the next morning was the only time we could do an interview with friends who were in town. I was a mess, so it’s good that we were just audio in those days, but holy hell is that ever NOT a way to discover how a medication will affect you!

This situation will be different because, unless my meds react poorly with one another, I’ll mostly just be dealing with pain. Which is not ideal, but it still should be fine, more or less.

I just…how do I get myself into these things? #becauseicantsayno

Dealing With A Diagnosis

I read this thing on FB yesterday, and while the first line was something I could sort of relate to, the majority of the rest of it was not.

The opening line had something to do with there being certain moments in your life you would never forget – when you realized your husband was about to propose, the birth of your child, and being told you had MS.

Now…I don’t know about those first two moments, per se, but I imagine they are fairly unforgettable. And I agree that I probably won’t forget receiving a diagnosis any time soon.

But the whole rest of the post was so different from my experience that it’s almost funny.

Optic neuritis was the writer’s flare up which led to her diagnosis, same as mine.

She received a phone call; I was sitting in my neurologist’s office.

She’d waited a whole four days to find out why she couldn’t quite see out of one eye. I waited the better part of a year, which was still obscenely quick for an MS diagnosis. I lucked out in that all of the specialists had an idea of where my path was leading, and knew what to look for.

She collapsed to the floor sobbing and picturing wheelchairs; I went to work for the rest of the day.

Her husband held her like he’d never held her before; I dealt with it on my own, alone.

Mind you, I’d also done a ton of research. As soon as the possibility of MS came up, I went online and started reading about all of the horrifying things the disease can do to your body, but I also started looking into the 3 first line medications my neurologist told me he’d be considering if MS turned out to be what we were dealing with. I went into various forums and learned first hand what other people experienced with each one, and how they dealt with the side effects.

I even watched a video of someone giving herself an injection, but I was pretty sure I would be going the pre-mixed Pen route instead.

Anyway, there was one appointment when I thought the neurologist was going to call it, and I took the day off work, just so I’d have time to process. He didn’t, though, so I had a decent enough day off from there. The day he DID call it, I actually wasn’t expecting it, so still felt a glimmer of shock roll through me at hearing the actual words.

Then all my research brain stuff kicked in, and I told him which medication I’d decided to try first. He was super impressed that I already knew so much, and we filled out the application form right then, which he faxed in from his office. I was learning to do my first injection within a couple of weeks, I believe.

I asked a friend to come over for the injection training session, in part to help keep the kittens out of the way, and in part to help me remember the steps for when I would do the next one on my own. Probably also just so I wouldn’t be alone. Nurse Billy wasn’t the most comforting presence ever, to be honest. I dealt with the side effects alone, however. And they sucked. But I got better at it once I knew exactly what I was dealing with.

I remember Tim went ahead and set up a brunch/interview/chat with some filmmaker friends for the next morning. I was so mad – I had no idea how my body was going to react to the injection, let alone how I’d feel in the morning. I made it out, but hadn’t slept much and was still feeling many of the flu-like effects the whole time. I got better at managing the immediate and next day side effects, but man. A little consideration after that first injection would have been nice!

Anyway. Mostly I am glad that I can do these things alone, and don’t feel the need to have other people around me all the time. If I ask someone to go to an appointment with me, for example, or any of the tests I have to get done, I tend to focus on them more than on myself. I feel like I have to talk to them, entertain them, do something to make sure they’re not too sorry they came with me. But sometimes I don’t really want to talk. Sometimes I just want to wait until it’s my turn to get it over with and move on with my day.

Sometimes – most times – I’d rather just stay inside my own head for awhile, and not feel like I have to interact and be “on” all the time.

Do I think that makes me better than the lady who wrote the post about being a mess and having a large support system? Yes, yes I do.

Haha

Not really; it’s just different. Part of me is mortified at the thought of not having the time and space to process things on my own. But part of me is jealous of that level of support and help from other people.

Above all, however, is the understanding that I chose my own path, each and every time, for better or for worse.

The fact that I am mostly successful in making it work for me is what makes me awesome. Well…one of the things, at least!

Interesting Day

Interesting day.

Physically taxing, yet somewhat emotionally rejuvenating.

I had kind of a hard week – work, fatigue, the heat, stress, sadness yet trying to wean off antidepressants, and a general malaise in every facet of my being.

I am tired.

This morning, I helped out a raccoon who took longer than usual to accept my aid, but I finally saw them run across the street to head home for the day.  Then I carried home a sweet little cabinet that was on the curb – it was heavier than it seemed at first, and about did me in on a physical level.  My muscles have been shaking ever since; every cell of my body feels drained.

Totally have great nerdy plans for that cabinet, though.

Then, after much back-and-forth deliberation, I went to the zoo.  Had a brief but amazing time with equally amazing friends,got to see inside the white rhino barn and met Tony, the handsomest white rhino I’ve ever seen.  He is astounding up close – at least as close as we got today.  I can’t even imagine being able to touch him and look directly into those deep, gentle eyes of his.

Also, there was swag, some of which I scored thanks to those aforementioned amazing friends, and am so excited to add to my zoo-related belongings!

And there were crayons.  And, hence, colouring.

I decided to stay longer to hang out with young Miss Juno, who was being ridiculously cute and even lingered by the fence with me for a while.  Also helped a nice older lady plan her tour of zoo babies, which was fun!

I was running out of steam in the Eurasia Wilds when I met up with another friend, but decided that I could not leave in good conscience without seeing the baby lynx and my beloved gorilla troop.  So I stayed longer than planned, but added the giraffes (Kiko has grown taller, I believe), and a repeat viewing of the polar bears – as well as other animals along the way – to the mix.

Now I’m extra exhausted, and everyone hurts.

But I can’t say it wasn’t worth it!

Thanks friends!  🙂

PS Too tired to proofread this – sorry for any errors I didn’t catch while typing!

 

Spirograph

If all lives really mattered, wouldn’t we all be a lot less douchey about those not our own?

So much reacting without thinking.

Whereas, some days, thinking is pretty much all I do. I’ve been thinking a lot about relationships lately. Not, like, the dating kind. Obviously I am far too angry to date. Not specifically those, anyway. Just the ways in which I relate to others, and how they relate to me. Friendships, mostly, though some family and date-ish-like relationships, too.

Tomorrow I get to spend a large part of the day with one of my longest, closest friends, and I can not freaking wait! I can’t even remember the last time we got to hang out together like this…unless you count the day we spent in a clinic while I took my first dose of Gilenya, but I’m sure both of us would have rather been hanging out somewhere else. Somewhere we could talk and laugh and be ourselves more completely. Maybe somewhere with alcohol. Haha

Tomorrow will be much more “us”. Outside of eating chips in our pj’s while watching old episodes of “V” on VHS, of course.

Anyway, I am ridiculously excited about it – about just having the plan, let alone how much fun and cathartic it’ll be to actually do it all!

Another of my longest closest friends is in town this week with his wife, whom I haven’t met yet but feel like we’re going to get along splendidly together. We haven’t created an actual plan to hang out yet, but we will…it’s just a matter of finding mutual gaps in our schedules. But since I am also off tomorrow through Sunday, I think we should be able to figure something out!

I am ridiculously excited about that, too – I don’t even care what we do, so long as we’re together for a time!

I’m not sure if I feel so close to those two people because I rarely see them, but when I do, it’s like no time has passed, or if it’s because I’ve lived with both of them before. In the same house, just not at the same time. Maybe it was the house that cemented our friendships. Maybe it was the time period – I was fully out and feeling pretty cocky about my awesomeness; I thought at the time that I was pretty open about who I was, or at least as much as I had discovered so far. So I wonder if my frustration now is in feeling like I am less open than I was? Or the same but wanting to be more? Am I just more aware of feeling like I don’t know how to be the kind of friend to certain others that I want to have for myself? I definitely feel more guarded with new people now. I hadn’t been devastated yet when I met those friends from my 20’s.

Maybe some people just better at seeing through my crap and calling me on it and moving both of us past it. Maybe my newer friends just haven’t been given the chance to get there yet.

The interesting thing to me is that – regardless of the when or the how long – none of my closest friends ever consider me to be their closest friend. Or rather, they’ve always had people in their lives who are closer to them than I am. Just as I always have people closer to me than anyone who’s considered me one of their closest friends. It’s like some weird spirograph of connections; always fluid and changing and growing and shrinking and yet somehow still working somehow.

For the most part. There are times I still long for a more balanced mutual connection – to the point where I find myself even trying to force it sometimes – but for the most part, the spirograph works, and everybody gets what they need, more or less. Trying to force something to be what it’s not just because we want it to be something else…really doesn’t work for anyone. Which I of course know, but that doesn’t stop me from trying sometimes, even though I know it’s not going to turn out the way I want it to. Sometimes I just can’t help myself, I guess. Maybe I haven’t figured out the difference between reaching for what I want versus fighting a losing battle.

Maybe I still haven’t been able to even tell the two apart.

On The Need For Mental Health Reform

So, back in 2008, a guy named Vince Li got on a Greyhound bus and, seemingly out of nowhere, started stabbing the young man sleeping next to him, 22-year-old Tim McLean.  Li would go on to sever his victim’s head, show it to the horrified passengers who were huddled on the side of the highway, and then not only remove other parts of McLean’s body, but eat them, as well.

In court, Li was found not criminially responsible for the crime, and sent to a high security psychiatric ward.

Less than 8 years later, he has legally changed his name and is preparing to live on his own again.

I have to say, I am really struggling with this whole thing. On the one hand, I understand that mental illness is a legitimate reason to not be held responsible for committing a crime. On the other hand, this man took the life of another, and while he may be feeling better now, the other passengers, the bus driver, the trucker who stopped to help, the police on the scene (one of whom has since taken his own life) and most of all, the friends and family of Tim McLean, will carry this horror and loss with them for the rest of their lives. I’m just not sure how I feel about someone causing – deliberately or not – so much pain and suffering to others, being able to just move on and live out the rest of his life.

I think this whole scenario serves to highlight the many issues and problems with the way mental health is handled, both in this country and possibly around the world. I think, even though great strides have been made, at its heart, we still don’t really know what to do, what to think, or how to feel. We can couch our thoughts into PC wording, or spread clever memes and hashtags on social media, but I am not sure anyone actually has any real understanding of how best to deal with mental health issues. I’m not sure it’s even possible to really understand, not for those suffering, and not for anyone who is not.

It’s not that people aren’t trying hard enough. I think it’s just such a vast and complex issue overall, and the fact that mental health is completely intangible, and invisible – we can’t touch or see the problem itself, only the external effects of it – that all makes it even more impossible to truly get a grasp on. In addition, actual focus on mental health – in terms of the wider public, at least – has really only come about in recent years, comparatively speaking. We hear horror stories of drilling holes in skulls to release the demons within whenever someone had a headache (along with pretty much anything that happened in asylums around the turn of the 20th century or so), we shake our heads in dismay at tales of electroshock therapy and the mishandling of postpartum depression. Even the effects of addiction and withdrawl haven’t been fully investigated and treated as of yet. There’s still so much more we don’t know or understand than we can claim to have a handle on, and that’s kind of terrifying, if you think about it.

We have procedures and punishments for those who break the law outright, deliberately and knowingly. Those have changed a lot over the years, too, as we learn more about incarceration and rehabilitation. We aren’t sure what to do with the criminally insane – those who seemingly can’t be rehabilitated and released back into the wild (aka civilization), so we keep them locked up indefinitely, for the safety of themselves and others.

But we have a very vague line drawn where accountability and responsibility is concerned, and that is part of the problem. We agree that some people shouldn’t be punished for crimes that they can not be found criminally responsible for. But…what can be done, instead? Can justice still be served if the offender can’t ever be held accountable for his or her actions?

Li claimed he’d been hearing the voice of God for a good 4 years before “God” told him to kill Tim McLean. There’s zero point in trying to find the logic in it. Like, God also said “Thou shalt not kill” – there was no caveat in that statement. And did God also tell Li to eat parts of the guy he’d been instructed to kill? To defile the body and cut pieces from it to put in his pockets? To show the head of his victim to the other passengers on the bus once he’d removed it? Did God create the aliens that he wanted Li to save the rest of us from?

Did God tell him to carry a big-ass knife around with him, just in case?

We’ll never know any of that, because we weren’t inside Vince Li’s head, and if we were, everything would make sense to us, because that’s how mental illness works. You see one thing; the rest of the world sees something else entirely. Everything you see is real, whether it’s actually there, or not.

In that way, reality is subjective.

So, basically, to Vince Li’s mind, he did nothing wrong. He was a hero, in fact, saving us from aliens, or whatever.

At the time.

But what about now? What does he think and feel abuot what he’s done now that he’s medicated and doesn’t hear voices anymore? His condition is currently not curable, so he must remain medicated for the remainder of his life. And there’s nothing to say that his treatment won’t need to be adjusted in the future to remain effective, so hopefully he’ll be closely monitored for the rest of his life, too, since he won’t be able to determine on his own if his reality is slipping again.

And that’s the thing, really, because who can tell? In the days and weeks leading up to the murder, no one noticed anything wrong or different about him. He’d been hearing God’s voice for 4 years, and apparently no one could tell anything was amiss. So how do we, as a society, know that we’ll still be safe even when he’s back out in the world, living on his own?

We don’t.

Maybe it’ll be fine, and he’ll never do anything like that again. But guaranteed there’s more people out there listening to the voice of God speaking to them and only them, every day. And no one around them can tell. There will always be more people slipping, and breaking from reality. There will always be crimes committed for which the perpetrators are not criminally responsible.

I realize that we can’t just lock everyone up and throw away the key, or hospitalize them until they die. I understand that, in this case as in many others, Li is and will continue to be closely monitored, even when he’s on his own.

But I think we need to find a better way. Some way to not only research and find new methods of treatment, but to also see that a better sense of justice is served. What Li did may never seem real to him, but it’ll never be anything but real to those who suffered as a result of his actions. There needs to be some form of punishment, some price to pay. Some attempt at atonement for crimes committed.

And not just in this case, nor just in cases where there is an added criminal element. We need to do better for mental health issues overall. Even something that seems simple from the outside – depression = sad, so therefore sunshine, laughter and hugs are the cure – is more complex to the person living with it, and to those around them who are affected by it. Hugs can sometimes be the cure for sad, but being sad isn’t the same as being depressed. Being sad is a mood. Being depressed is a condition. Hugs won’t cure depression any more than they cure a broken arm or a ruptured spleen. And that’s how we have to start thinking about mental illness in general. We need to treat it the same way we treat physical illnesses – as something that’s actually not all in our heads.

Even though it technically is in our heads, but not in a way that can be brushed off as irrelevant or easily remedied. It’s not something that can be quantified nor understood, even by the sufferer.

It’s a physical ailment of the mind.

As for when there is a criminal element involved…I just don’t know. There needs to be something in between institutionalization and rehabilitation/release. At least for the length of time a mentally competent person who’d committed a similar crime would receive in a court of law. Something that would allow for closer monitoring of the individual, as well as further research into the disease, the hopefully both understand and treat it better. Like a halfway house, but with stricter controls, medical and therapeutic monitors and less tangible access to the outside world. We don’t allow murderers out on unaccompanied day trips and the like while they are serving their sentence; the same should really hold true for those who kill while suffering a break from reality. The act is the same, the accountability is different, the punishment should be somewhere in between.

I think that might make it easier to determine what punishments would best suit others, too, like those who commit crimes of passion, or while under the influence of drugs and/or alcohol. Addiction is itself a mental illness, and while someone may commit a crime while they weren’t entirely in control of themselves as a result, there is still a price to be paid.

They always say the punishment should fit the crime. I think the real problem is that we’re slowly realizing that the issue is not nearly that clear-cut; not so black and white. It’s a series of complex layers that we’re only beginning to dig into.

So maybe the way we deal with it should have several layers to it, as well.

MS and Gilenya – Some Possible Side Effects

I can’t remember when I first started taking Gilenya, exactly, but I believe it’s been just over a year. Sometime in summer 2014, I think. Considering I had to spend a day in a clinic having my heart rate and such regularly monitored after I took the first dose, you’d think I’d have a more clear recollection, but I was also going through some personal stuff at the time, and most of the past year and a half, or so, is pretty much a blur.

To be clear, though, I absolutely prefer the daily oral dose of Gilenya compared to the weekly injectible dose of Avonex I was on before. I’d lose a day a week to extreme flu-like symptoms that kept me home in bed, and feel like hell for another day or two after once I was functional again.

I’d also meant to keep a closer eye on any changes that cropped up in the beginning, and in the time since, as my body became more accustomed to the new medication, but I didn’t really do that. As well, it’s often difficult to tell if any of the changes I have been noticing are a result of my age (I turned 43 in Sept 2015), MS itself, or my body’s reaction to the medication. As such, I’ve often spent time online checking out what other people are saying in forums and the like, to see if I can find any similar experiences. This is my first attempt to compile some of my observations together.

Bruising

I remember pretty early on after I started taking Gilenya that I went online to see if anyone else was experiencing increased bruising in their day to day lives. I’ve mentioned I’m not the most graceful person around, but for awhile I seemed to be getting bruises without any recollection as to what I’d done to earn them. Like, more than usual.

That observation fell off my radar for several months, but popped back up again recently when I ended up with a fairly huge bruise on my upper arm – that’s still visible now, at least 4 weeks later. Maybe more, since I can’t quite remember when I got it. I seem to take longer to heal overall, really, be it a bruise, or cut, or cold virus, etc. I don’t get sick as often as I thought I would, thankfully, but when I do, it’s hella hard to bounce back from. Takes weeks.

After my Guinness World Record attempt, wherein I’d been awake for over 55 hours straight, I experienced numbness over pretty much all of one side of my body. That also contributed to physical injuries, because my sense of balance was off, my sleep pattern was disrupted, and it was easier to walk into things without noticing because the impact wasn’t registering in my brain. That’s pretty much cleared up now, at least.

Fatigue

I’m pretty sure it’s more the MS than the Gilenya, but regardless, the level of chronic fatigue I’ve been experiencing for the past few years or more is…ridiculous. MS is such a dumb disease, and if I could vote it out of existence, I would. It won’t kill you, necessarily, but it’ll make every single aspect of your life more difficult, uncomfortable, and in some cases, impossible. My body is tired all the time, but my mind struggles to keep up to day-to-day activities. I can’t remember things, so I put notes in my phone to remind me that I need to do dishes when I get home, or whatever. At work I write everything down because I can’t remember what I’d just been working on once I get interrupted for even a moment. It’s frustrating. And all of the effort it takes to focus on doing any mental tasks causes me to be extra weary by the end of the day. I feel like everything inside me has slown down, while the world keeps going at the same pace it always did. Again, that’s probably more an effect of MS, rather than Gilenya, but let’s just say I definitely don’t feel any more alert than I did before I started taking it!

Muscle Control Problems

Everything from weakness, to tingling, to nerves jumping, to dropping things, to controlling when I need to use the washroom versus when I just want to – even simple things like zipping up my jacket takes a lot more concentration than it used to. And that’s probably more MS-related, as well, but definitely worth mentioning. I feel like all of my muscles are just slightly out of control now. Not to the point where it’s noticable from the outside, but inside, I feel like I have to focus to keep from falling, or dropping what I’m carrying, or taking a billion attempts to screw the top back onto my Coke bottle.  I even have to schedule my loo breaks.  Activities that could previously rely on simple muscle memory – like zipping up a jacket or washing a plate in the sink – are more difficult, and things requiring more advanced motor skills – like threading a needle – are next to impossible. So much so that when I do accomplish something that used to be simple, I almost feel it’s worth a Facebook status update, or something. Maybe a nice shiny plaque. “In honour of Sue, for getting her key in the lock on the first try.”

Menstrual Cycle Chaos

Not something I love to talk about, either, but that might be why there is less information out there on such a new medication as Gilenya. Or maybe it’s just because I’m getting older. But the timing seems pretty coincidental if that’s the case, and when I posted a question to other ladies in a related online forum, the concensus seemed to be that I wasn’t the only one who experienced a sudden change. What was once pretty freaking regular has become so impossible to anticipate that I spend a good 2-2 and a half weeks each month trying to be prepared for anything. And that’s just not for the start. It also is difficult to tell when it’s actually done, versus just taking a nap. Haha

Ridiculous.

I’d like to say things have kind of evened out lately, but I’m not prepared to commit to such a statement just yet. It seems maybe a bit better – for quite awhile in the beginning of my Gilenya experience, it could be anywhere from a week early to ten days late. And then go on for however long it felt like it, apparently. Now, for the past few months, at least, it seems like there is less of a huge gap between the early and late ends of the spectrum, but that could be any number of factors affecting it all, really.

Tough to tell. Just another annoying aspect of life that I have to live with.

I know I’m forgetting things (why didn’t I write them down first?) but that’s a fairly good start, anyway. I’ll write another post if I think of more another time. The switch to Gilenya has definitely made my life much easier overall. Well, maybe not financially, but the drug company has actually been really good about working with me to make sure I don’t miss too many doses in a row, so that’s good. And none of these things are actually complaints – more just observations, because I know new side effects will be discovered over time as more and more people start using this particular medication to treat their disease.

It’s definitely the condition that’s complaint-worthy, not the medication for it!

But THAT’S for another post.