Distractions

No idea what I thought I was going to write about today. I was distracted by a pizza party for a coworker’s last day, and now I am painfully full and not really inclined to think about writing.

Plus, I have work to do.

So here’s another quote from a book that I enjoyed, instead.

Rima had tried jogging after Oliver died. She thought it would be smart to get physically exhausted. She thought if she were body-tired instead of, or along with, feeling the heavy exhaustion of grief, she might think less. But the effort involved in lifting her feet over and over was too much for her. Later she tried again, but found she’d been mistaken in her primary assumption. All you did when you ran was think. She hated it.”

Now, I definitely have not tried running as a way of dealing with the exhaustion of grief. I can barely walk some days, I feel like, so while I was once a distance runner as a kid, I don’t think now would be a very good time to pick it up again. I’m more likely to wreck myself before I can tire myself out, really.

I have found that physical pain often helps detract from emotional pain, but it’s insanely temporary. Like, getting my first tattoo hurt far less than losing Alysia. Most of it even hurt less than saying goodbye to Hudson. But the physical pain subsided, whereas the emotional pain still remains.

I have been known to attempt to tire myself out in order to not think and feel so much, though. It doesn’t really work for me, even when I push my body further than it wants to go. It’s a distraction, for sure. But the effects don’t last.

I like that this book recognized the different kinds of tired a person can be. I haven’t often seen that distinction, in books, film, television or everyday conversation. I like how true it rang for me.

Changing Bodies

Bodies are weird.

Fascinating and stuff, too, but ultimately weird. The number of changes – large and small – that each of us goes through over the course of our lives is astronomical, really. And everyone is so different, despite many similarities. I admit to being concerned on occasion about accidentally getting some human on me when I ride public transit. The myriad of skin conditions and odours and levels of filth can be overwhelming sometimes.

It’s easy to become a bit of a germaphobe in the city. People are always touching things and spitting and coughing and greasy and…just yeah. I try not to get too much human on me if I can help it. I’ll pet a dog I’ve never met before on instinct, but I really don’t want strangers touching me or getting them on my stuff.

I wonder if any of us really sees ourselves when we look in the mirror. Or if anyone else sees what we see of ourselves. Or if anyone knows what we see when we look at them, and vice versa. With so many changes happening all the time, and growing older every day, how could anyone ever really keep up with the present? Especially when we’re pretty much mired in the past and focused on the future?

Know Thyself

Every so often, I dream of a plane crashing.  Not one I am on, but one I witness dropping from the sky.

Last night, it was three.  Two smaller air show-like stunt planes, followed by a commercial airliner.  They all landed in water and disappeared beneath the surface almost immediately.

I called 911 and let them know, but as I was talking, I had trouble remembering details, and then began to doubt whether I’d seen it, or not.

I started to wonder if I’d just been dreaming, and rather than waste more of their time, I hung up on 911. And then I woke up.

Sometimes I dream while I am in the midst of waking, and imagine things are happening.  Usually I have to turn on a light and think about what’s real before I can piece things together again.  Once I was convinced I saw smoke and was already planning how to best evacuate the house when I realized I couldn’t see it anymore.  It’s confusing, and the feeling never really leaves once I am fully awake.

In other news, it occurred to me earlier that I’m back to my late 20’s weight, but with my early 40’s body, which means more appropriate curves and a smidgen of maturity. I mean, it’s also an early 40’s body with MS, so it is tired all of the time, and in pain much of the time.  Today has been particularly brutal, because I over-exerted myself the past two days.  So it’s not perfect, but I am content with it, regardless.

For the first time in over a decade, whenever I look at a photograph or catch my reflection in a mirror, I can see myself in it again.  There’s so much more to it than mere appearance, and even more to go as I grow, but it’s a pretty amazing place to be, I’ve gotta say.

It’s a sensation I didn’t know I’d lost until it came back again.  In a body I no longer know, due to a disease that takes away control, I can still see myself; see me again, and know me anew.

I feel a vague sense of power in that.

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Is It Just Me?

Sometimes hats give me headaches.

Sometimes ponytails do, too. Or did, when I had long hair. Possibly will again now that my hair is longer than it’s been in well over a decade.

Does anyone else ever have weird things go on with their bodies, but because it happens all the time to you, you find yourself wondering if you’re the only one, or if people just don’t mention it in casual conversation?

Like, not weird like a third nipple or extra digit or anything like that. Just odd aches and pains or other sensations that seem to have no obvious root cause. I remember reading a book when I was younger wherein a character – I think a teenaged boy – walked down a hallway at night, and reference was made to his toes popping. My toes totally used to pop all the time – possibly still do, but either not as much or I’ve just gotten so used to it that I don’t even notice anymore – but that was the only reference I’d ever come across in the general public. I don’t even know why they popped so much back then – is it a growing thing, or something? I don’t even know. As far as I could tell, until I read that book, I was the only person on the planet with toes that made popping/cracking sounds as I walked. It was just never spoken of before, nor since, really, whether it was weird and unique or not.

I’m thinking it’s a pretty common thing, though, if it was mentioned briefly in a book.

I’ve felt for a long time that bodies are just plain odd, and that there is still more that we don’t know about them than we do. Or maybe “odd” is the wrong word. Maybe I mean more complicated and unpredictable. It’s kind of remarkable that we all look basically alike, as a species, and yet there are literally billions of differences. Maybe even countless differences. We don’t all grow the same, parts don’t all work the same, things don’t all develop the same way, and then there are all the things that can go wrong throughout the course of a lifetime.

Having MS has introduced a whole new equation into my relationship with my body, too. For the most part now, when something different happens – some new pain, tingling sensation, numbness, vision problems – whatever the issue is that’s been introduced, my first thought is that it must just be an MS thing. For the most part, it’s all little things, temporary things, but my go-to explanation is MS.

Which…hopefully I don’t dismiss any symptoms of something else as just an MS thing! That has the potention for badness. So far, however, I’m usually floating between “it’s an MS thing”, or “it’s a my wacky body thing”, or sometimes even “it’s happened for as long as I can remember, so it might just be my body, or maybe I had MS the whole time and it’s always been an MS thing”. Who knows, really?

It’s funny, though, when a thread of commonality is found with another person, the sensation of relief, and humour and just momentary connection that’s made in that instant of recognition. That vocalization of “oh my God ME TOO!” holds so much emotion and connection in just a few simple words, and creates a bond of similarity between two otherwise different beings.

I have a ton of such little things, aside from the popping toes. Most of them involve pain, because that’s more noticeable and easier to remember when blogging. Examples include: if someone makes me laugh while I am eating, I invariably end up with a piercing pain at the back of my jaw – where my upper and lower jaws hinge together, actually. Like, horrible stabbing pain. Sometimes when I am walking I’ll suddenly be struck by pain so awful I wonder if my toes have actually all broken right off, and are just kept on my foot by skin and my shoes. In my mind, I picture them flapping uselessly, and painfully, in my sock. It’s so bad I end up with a pronounced limp until the feeling passes. Often for no reason I can think of, a stitch of pain in my side or across my chest will hit hard and fast, and be so bad that I can not draw a full breath until it passes, as well.

In the not painful but super annoying category, I sometimes experience a sudden ringing in either one ear or both, and usually it’s so loud that I actually can’t hear much of anything for a few seconds. It always fades quickly, though. A drive-by ringing. And for as long as I can remember, whenever I’ve had a certain level of nightmare, a muscle somewhere in my mid-lower back goes into spasm and not only wakes me up, but takes a concerted effort to calm down enough that I can stop my back from arching. I long ago began to equate that sensation with terror, so even when I’ve gotten a massage before, I’ve had to tell the person to stay away from that area of my back entirely. I can’t tell exactly where the muscle is, and by the time I realize it’s close, the muscle has been triggered and it feels all manner of not good. So brutal.

Has anyone else noticed that it’s very difficult to hear anything when you’re yawning – almost like being under water? Or is that just me?

I’m telling you – bodies are weird! And living inside them is an adventure and a half, whether we asked for it, or not! And we’re all doing it differently, with tiny sparks of common experience thrown in for good measure. I think we even experience feelings in different ways, just as we all process information and the world around us from differing perspectives.

And there are billions of us. No wonder we can’t get along, so hung up on difference as we are. The human race needs more “OMG ME TOO” moments in our days, methinks.

Food Matters

I need to evaluate, re-evaluate and keep re-evaluating my relationship with food.  I can’t break up with food, so I need to find a way to make our relationship much healthier than it’s ever been, and keep it that way.  Much easier said than done, of course, and perhaps not even entirely possible.  But it’s definitely time to try.

I love food, in general.  I always have.  Well, snacks, at least.  From needing that one bowl of chocolate ice cream after school every day, to a bowl of whatever flavour of chips was in the house, snacks were always welcome in my belly.  Peanut butter and honey sandwiches for lunch was a staple, breakfast for dinner was a treat, cereal was a never-ending parade of taste sensations.

I was a scrawny kid with a high metabolism, so I was the hateful sort who could eat whatever I wanted and never gain weight.  My problem was, for awhile there, I couldn’t gain weight.  I was constantly getting weighed at the doctor – weekly, if I recall – and everyone did what they could to put weight on me, but none of it worked for awhile.  I often wasn’t allowed to leave the table until I’d finished what was on my plate – which, of course would grow cold before I could finish it.  Mealtime became this highly stressful thing for me, and that did nothing to increase my appetite, so for awhile there, things did not go well.

As I got older, my body started to balance itself out, and though I was still scrawny, I was at least within the target weight range for my age and height.  The low end, but still there.  I went to University and introduced regular alcohol consumption to my routine, and still bounced between the same 5lb range for a decade or so.

In my early 30’s, a lot of change happened – mentally, emotionally, and physically.  I got into teacher’s college, so I quit smoking before school started, which helped launch me into a deep depression.  I started drinking way more, and continued to eat whatever I wanted to, not realizing that my metabolism would no longer bounce back as it had before.  It’s almost like it slowed to a stop for a bit there.  I packed on something like 60lbs in the 8 months of my school year.  None of what I’d purchased at the start of the year to wear in class would fit, and I couldn’t stop the spiral.

Over ten years later I managed to lose some of the weight, but it’s always in stages.  I try different things, and it works a bit, but I plateau, in a way, and no matter what I do, nothing changes for awhile again.  It’s like a tightrope where the drop is only on one side.  It’s ridiculous, really.  But the crazy guilt or sadness or despair I feel every time I eat something -no matter what it is – feels like it’s doing more harm than anything else.

And a healthy relationship that doth not make.

I think I’ve gone from one end of the spectrum as a kid, to the opposite as an adult, and none of it has allowed me to enjoy the simple act of eating.  I think everyone has this problem to some degree or other, and it seems to me that we’d all be a lot healthier if we could allow ourselves to enjoy providing our bodies with fuel.  Our bodies need it, our minds need it, and I think our hearts and spirits need it, too.

I’m not saying we should be able to eat all the crap we want and feel great about it.  I’m saying we need – or at least I need – to find a way to take the stress and guilt and fear and despair out of every single mealtime.  I could eat all the healthy, nutritious foods in the world and it won’t make a lick of difference until I can be glad I’m doing it.  Until I can enjoy it.

It’s all about balance, and when it comes to food, I’ve never had any.  Time to start looking for some.

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.