Debating Equality And Stuff

My photo is still in the lead – with 4 more days left to vote (including today)!

http://snaptoit2016.pgtb.me/m3SM8X/lnt7l

As well, my appointment to speak with the library’s current Writer in Residence has been booked for next Saturday afternoon! I am nervous but excited for that. I want to familiarize myself with the book as it currently is, but also be as prepared as possible to talk about the changes I want to make. I’d like to get the most I can out of this meeting, and hopefully find myself at a point where I can move forward with it all very soon. We’ll see. At least now I have a target date to be ready to talk about it all with a perfect stranger! Haha

My order from The Honey Bee Store is out for delivery today, too. That will hopefully make up for the rainy dreary day we’re having!

I was thinking – instead of trying to elevate the status of women to make them more equal to men, we might be more successful if we instead lowered the status of men. Pay men what women in the same job position make, and see how quickly things change. Find ways to make men walk – literally and figuratively – in women’s shoes.

I mean, obviously it would be impossible for them to gain any sort of real understanding of the female experience in this society, let alone in any others. They won’t have grown up putting limits on their dreams, because no matter how amazing they are at, say, a particular sport, they won’t inherently know that they will never have the chance to play in the World Series or fight for the Stanley Cup or earn that shiny Superbowl ring. None of them had to stop playing and go help make dinner and set the table while their brother was allowed to keep playing Lego. Because we had to learn how to be good wives one day. Yet none of them had to learn to be good husbands.

They won’t really understand about going to public washrooms in groups, or walking alone on a dark street clutching keys between the knuckles of one hand, or even wearing clothes that were designed to fit snug to the body – just not necessarily your body. I guess if they had to walk around in a tight bodysuit all the time, they’d get kind of an idea what it can feel like, but not really. They won’t have lived with it every day.

It’s like that whole FB meme when Trump whined about how Clinton was given more time during one of the debates than he was, when in actual fact, he was given about a minute and a half longer than she was. It’s just that, to men, being treated as equal to women feels like they are being ripped off; as though it isn’t fair.

Even much of the language surrounding women in politics is designed to strip them of a bit of their power and presence; the same power and presence we allow the men in politics to retain. Referring to Wynne as “Premiere Mom”, or to Hillary by her first name as opposed to Trump by his last. ‘Cause he’s just one of the guys, after all, right?

As a side note, I don’t watch the debates or even really pay attention to anything he has to say – except to laugh at him – because I don’t feel he’s worth my time nor energy. His ‘y’ chromosome makes him genetically inferior to me, so I figure I get to decide who’s worth my spending some of my finite time on this planet with, and he’s not one. He’s an orange footnote with bad fake hair. How’s that for equal treatment?

And yes, I know it’s not all men, and not all women, and a lot has changed even as nothing will really ever change. I get it. I see it. I know it. I keep believing that the general public is at least intelligent enough to hold a conversation which doesn’t reside solely in absolutes, but admittedly the general public is almost always the first to prove me wrong, so whatever.

It’s just some of the things I’ve been thinking about.

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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!

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.

Addendum to For Michelle Nolden Post

In conversation with a friend regarding some parts of yesterday’s post, I had a couple of thoughts to add:

It’s so freaking frustrating, isn’t it?

 Even when you’re kind of prepared, like, if the jogger hadn’t have been just a jogger, I’m not sure I would have done any better.  I just couldn’t stand not knowing what was coming for even a second longer.  I’d frozen before that night, and I have frozen since.  I’m also always am a little unsure as to whether or not I’d played a part in whatever happened.

For example, my first actual girlfriend was a huge alcoholic.  The kind that gets super drunk really fast, completely changes personalities (in her case, violent as hell), and then forgets everything (on purpose or not, I never knew for sure) by the next morning.  I never knew who was coming home at the end of the day.  She’d either make me dinner or toss me around.  One time we were screaming at each other, and I remember she asked what was wrong with ME.

 I said I didn’t know.  Totally took what little wind I’d had out of my sails.

 I used to wonder, though, if I knew what she was like when she drank, did I ever, like, push the envelope?  Did I ever say or do anything that might have brought on her rage?  And if I did, was it then my fault instead of hers?

 If it’s happening to someone else, I am so completely logical about the situation and able to react in a more protective way.  I see fault and proclaim judgement all over the place. 

When it happens to me, though, suddenly I’m not sure what’s right and wrong or deserved or not.  Things are never as clear when it’s me.

 

Ironically, another thing that happened when I was away at school is something I’ve only told one person.  That very same first girlfriend.  And she has since passed away from cancer, I hear.

I wonder if it’s a thing with women in general, where we feel less certain of our own rights or place In the world, so we don’t defend ourselves as much.  Some totally do – bitches be out there not taking any crap from anyone!  But the vast majority…I feel like we try to smooth things over and…what’s the word?  Placate?  Especially when it’s someone we know and trust, and/or someone in a position of power.  I feel like we maybe try to take too much of the responsibility, and the guys/people doing stuff aren’t taking enough. 

I guess it’s our society, really, though.  It’s much easier and often safer to just work it out ourselves, rather than try to prove wrongdoing to someone else who may or may not be sympathetic.  Most rape cases appear to put the victim on trial more than the perpetrator.  What the hell is THAT about?  How is it any kind of justice to force someone to face their attacker and, if they can’t remember stuff, or didn’t act the way they were supposed to after, use that to decide the attacker’s guilt or innocence?  The one on trial should be treated like they are the one on trial.  Not the other way around.


 

On Why Zoos Matter

I think there needs to either be a new category of zoos – with a new definition – or some of them need to have a new name created for them all together. There is a negative connotation attached to the term “zoo” that manifested a long time ago, but no longer applies to the accredited and regulated zoos of today. And that irritates the hell out of me, because once again, people base their opinions on things that aren’t true, and then apply them across the board, instead of taking each situation or establishment into account. It’s an ignorant way to go through life, regardless, but even more so when those uneducated opinions actually affect the things they think they are against in an adverse way.

Did that sentence even make sense? I am extra fatigued today.

People are against zoos for archaic reasons that are no longer reality, and espose these untrue “facts” to anyone who will listen, thereby affecting the good work that is being done, rather than support it and encourage it to grow and continue. You see, zoos are one of the only “businesses” on the planet that actually work toward their own extinction. They are a necessary facility trying to combat the damage humanity has inflicted on the planet and its non-human residents, while also having the end-goal of a day when they are no longer required. It’s actually one of the most un-selfish acts anyone could perform, and they do it every day, as best they can, by growing, sharing and learning as they go.  Most zoos have grown and changed over the decades – but for some reason, the public perception of them has not.

Contrary to some beliefs, they are not actually here for our entertainment, nor are the animals in their care. Their function and purpose is far, far more important and essential than that.

I’m sure one could argue that, if they aren’t here to put animals on display for the masses to gawk at, then why not close their doors and not let the public in? Why involve the public at all? Well, for starters, some places actually are like that. Not zoos, but most sanctuaries, farms, and even some wildlife reserves either allow limited or sometimes no public interaction with the animals in their care. Those are all different types of facility, however, with different mandates and goals.

I’m going to use the Toronto Zoo as my example for this whole post, as it’s the such one place I know best. One of the Toronto Zoo’s goals is to educate the public – about what they’re doing, and trying to do, about the animals in their care, about those species’ counterparts in the wild, about their efforts to keep various species from going extinct, about the ways in which they are able to re-introduce some species (like the black-footed ferret, for example) back into the wild! What?! Whoever heard of a zoo putting animals BACK into the wild?!

It happens all the time, guys. They are just careful about doing it, and try to do so in a way that will give the indivdual animals the best chance of survival once they get out there on their own. Because that’s what it’s all about. Survival. And not just of the fittest. In an ideal situation, the zoo wants not only for the vast majority of those released individuals to survive, but also for them to thrive. To reproduce. To build communities (if that’s what they’re into) and continue to grow into the important and in fact essential part of an ecosystem they were once a part of – before humans ruined everything.

Because we did this. Our species. We have made an enormous mess over the centuries, and facilities like the Toronto Zoo are working very hard every day to try and clean up our mess, and ensure we don’t make such a one again. Education is a huge part of that process, and it is the most direct route to something humans in general seem to lack – empathy.

Sure, there are pictures and videos and webcams and all kinds of neat technology these days. Why don’t they just use those to educate the public?

I’ll tell you: because it is not even remotely the same experience. I’d seen photos and video clips of Hudson the polar bear cub before I met him in person at the zoo. They were super cute and I was really excited to see him, but they had nowhere near the same effect on me as the moment I saw him with my own eyes. My heart skipped a beat, and from then on, I was completely in love with the little guy. Every time my big blue eyes met his so-dark-brown-they’re-practically-black, diamond-shaped eyes, I think I stopped breathing. We connected on a level photos and videos can’t touch. We knew one another. I never would have gotten him tattooed on my arm were it not for the experience of being allowed the chance to know him, either. That’s how much he affected me. He became a part of who I am, part of my core.

If you’re not yet convinced, because maybe I am just a crazy polar bear lady, go have a look at a photo of a human child. Then watch a video clip or two of the kid. Now go hold that child in your arms, look into its eyes, and tell me the experience is the same as when you were looking at the pictures and watching the videos. Tell me that connection you felt didn’t suddenly get a lot more personal and almost overwhelmingly real.

Not that I got to touch Hudson (I WISH!), but I am certain that would have made me even more of a crazy polar bear lady than I already am. 100%.

Another thing I learned from the Toronto Zoo is about the importance of enrichment for the animals, to help prevent boredom and depression. They are not out in the wild struggling every day just to survive, after all, and they have moods and emotions and thoughts, just as we do. It is important to note, however, that they don’t feel things the same way we do. Just because you don’t think you’d like napping all day in the warm sunshine, for example, doesn’t mean that African lions don’t freaking LOVE IT. They’re cats. Not exactly the same as house cats, but they have more in common with them than they do with you. Guaranteed. And not all of them are the same, either. Just because you read something about one lion doesn’t mean that same quality applies to every lion on the planet. They are individuals, just like you and me.

Anyway, I have cats living in captivity in my apartment. I keep them fed and watered, and pet them and cuddle with them and play with them, and they seem pretty happy. What I learned at the zoo is that it’s healthy for them to change things up every now and then; keep them on their adorable bean-shaped toes. It could be the introduction of a new toy or a new box, maybe break out some catnip on occasion, or even just move a piece of furniture over a few feet for awhile. It doesn’t have to be a huge change, just little things can make all the difference. My cats love the scent of mint, so I got them a box of peppermint teabags, and every once in awhile I’ll throw a couple of them on the floor and watch the cats start playing with them instantly. There’s a bit of a mess to clean up after, of course, but totally worth it. Same with bubbles. Sometimes they like those more than chasing the red dot!

For anyone who believes that housepets are not captive animals, you can go ahead and check your specist hypocrisy at the door. They are. The difference is that we believe we’re doing those animals a favour by rescuing them from the wild. We save them from having to hunt to survive and probably either starve to death or get killed by a vehicle or other animal, and instead give them a warm happy home to live out their years with their loving fur-ever family. That’s why no one is staging protests to Free The Housepets.

I, too, believe I’m giving the cats and dog in my care a better life than they’d have out on the cold city streets. It’s a responsibilty that I don’t take lightly. To me, it is my duty to do everything I can to give them the best lives possible while they are in my care. And that is an every day job, one I do gladly, and one upon which I am always looking to improve. For that’s how the keepers at the zoo feel about the individuals in their care. Each baby born is like one of their own, with the difference being that the parents, and families and other members of the species of each baby are also like their own. They care that much. They spend the night during particularly bad storms to make sure that the animals who depend on them for their lives – and for the quality of those lives – are safe and content. They work overtime, they work every day of the year – whether the public is there or not – and they want nothing more than for their jobs to not be necessary anymore.

To the better dead than captive bred camp, I can’t really pretend to understand where you are coming from at all. How is it even remotely humane to let a baby starve to death (one of the slowest and most painful ways to go, I hear) in the wild, versus giving it a home where it can grow up safe and cared for and live out the rest of its natural life in a not-quite-ideal setting, but at least be allowed to have a life? Is it really the better option for your high moral ground? Or maybe it would be better to kill the infant outright, so that it’s at least spared the agony of starvation. Brilliant. Except that should be applied to all non-humans, not just the ones you see on TV or the internet. Show of hands: how many people stop when they’ve hit an animal with their car to a) make sure it’s dead, b) ensure it wasn’t a lactating female with little ones waiting for her to come home, and if it is, then c) go out and find said babies to spare them the agony of a slow death?

Yeah, that’s what I thought.

There are, of course, exceptions to every rule, and that’s actually my point. You have to take each example on a case by case basis. Stop treating every lion like he or she is the exact same as every other lion. Definitely stop assuming that they are the same as you or I. The animals we eat are more intelligent than the average human toddler, and yet they are living in unimaginably horrid conditions from birth to tortuous death – but that’s a post for another time. #factoryfarmsarethedevil

From what I can tell, the word “zoo” does not do the Toronto Zoo – and most places like it – any justice whatsoever. It’s not an accurate representation of what the zoo actually is. The Toronto Zoo is part Ark for species survival and renewal, part Sanctuary for animals in need, part Retirement Home for aging animals, part Orphanage for youngsters who lose their mothers in the wild, part Education and Research Facility to find new ways to do all of those things better – and all love.

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.