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!

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Monday TIFF-day

As expected, I am suffering somewhat today.

However, the show must go on. As must life! So with another busy day and late night ahead of me, and the beginnings of a cold that have been hanging around for over a week now, I’m having some spicy kimchi noodles from the convenience store on the corner. Hoping that’ll at least keep me warm until lunch time!

Also because tasty.

Even though I can’t afford to go to TIFF, and especially because it still feels strange to not be on vacation and heading to screenings, I think I should plan to book at least the front end off next year. The Mind Reels is not accredited press on an official level, but we’re still getting more than enough festival action coming our way, and I am broken and exhausted right now.

Luckily I still have paid sick days available. Self care time is upon me, I think.

Remember to sponsor and share our Patreon page (http://www.patreon.com/TheMindReels), as just $2 per month gets you on the Patron board, and gets us closer to our initial $100 goal than ever before!

I filmed as much as I could for Canada In A Day, so once I get feeling better and have a bit more energy, I’ll be able to start going through the footage and cutting it together. There’s unfortunately not very much of it – the day didn’t really go as planned – but there’s some. Hopefully I can at least create a mini-narrative of my day, such as it was, and then share it online once it’s been submitted. I think the cut-off is a month from today, so while I have time in theory, I don’t think I have much time i practice. My next few weeks are pretty busy, too. SOMETHING will get submitted, though! Some clip may even make it in! I filmed Brody a bit, and he’s irresistible!

Tonight is going to be a late night. Not sure how I’ll get through it, exactly, but at the same time, if it’s as much fun as last year, I think my billionth wind will kick in nicely! Just have to get there, is all! I haven’t really been to many TIFF parties – or any others, that I can recall – but I think the Canada one would be my favourite, anyway. It’s just got an unpretentious vibe to it. Plus, I know a lot of the people who will potentially be there, so once the initial red carpet formalities are out of the way, everyone just gets to hang together, which is nice. I even just like people-watching in an environment like that; when everyone is relaxed and having fun together. It’s just nice.

Plus, if there are chips and beer, I’m all good!

Anyway, it’ll be amazing, I’m sure. I wish I felt better so I could enjoy it more, but really, just being there will be worth it. Knowing me, I’ll forget how crappy I feel shortly after my arrival, anyway!

I’m Still Standing

So basically, I was done with today well before I even left the apartment this morning. I debated whether or not to do even that much, but only briefly, because there’s just too much to do at work at the moment. In a way, it’s easier to just come in and do it than figure out what happened while I was off when I get back. Plus, in today’s case, I think being there in the heat and the ridiculousness of all the things that went wrong for me this morning would have been worse than coming to work.

Just, you know, to put into perspective how much my morning sucked.

However, there was no one big thing to which I could attribute my feeling that everything was spiralling out of control, but rather a plethora of small things that overwhelmed me as I was being bombarded by them. Despite just wanting to give up and go back to bed, though, I was instead able to take care of home problems as much as possible before I left, push the panic surrounding things I can’t control at the moment to the side long enough to realize that it’s probably not as bad as I’m fearing, and get myself to work. On time, even.

I haven’t really slept, I feel physically quite terrible, and I am struggling to focus on the tasks at hand…but here I am. Doing it all, anyway.

I realized that, while the frustration and panic and stress and fatigue made everything seem out of control, I can still actually function in small ways, and today that’s enough. It’s enough for me to feel a sense of pride in my ability to do the things I can do, even when it seems like there are so many more things that I can’t. Somehow, I was able to recognize that my feelings are still valid, even if there are all kinds of external reasons for feeling them more acutely than may be necessary. Maybe I get frazzled easily over little things sometimes, but even that is valid, because it’s how I feel. And that I am able to recognize that as it’s happening – as I stand in the eye of that emotional storm – yet still manage to keep up the struggle, makes me proud of myself.

I didn’t let the frazzled-ness win. What felt overwhelming didn’t actually overwhelm, because I’m still standing. Struggling, yes, and unsure as to how some things will turn out, but even that is a far more positive step than giving in and giving up. Any step forward is better than no step at all.

I think my therapist would be crazy pleased with me today, as well. And who doesn’t want that kind of validation, really? 😉

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!

 

What I CAN Say Is This

So many exciting things going on in my world right now…and I can’t talk about any of them here yet!

Haha

Ah well…I’ll find something else to babble about…let’s see…

Got through another March, and am finally into April. And payday. So that’s good.

I’ve managed to have a pretty quiet week so far, which is good. I’ve been spending more time at home, in part because I’m exhausted, and in part because I like it there. The animals all seem to appreciate it, too, especially after I spent the majority of the long weekend with them, and after I’d spent the rest of the month of March only home to sleep, for the most part. So we’ve been able to spend more time together this past week, and it’s been more relaxing for all of us, I think.

I think I’m going to a movie tonight, and then a beer or two. Possibly the zoo tomorrow, because I’m really starting to suffer withdrawal now. I mean, I haven’t even met the rhino baby yet! What kind of person am I?! And all of the babies are growing fast without me being there to witness it very much, which is just unacceptable. Even if I just go check in on everyone for a bit and then go back home to get things done, that would be good for my soul. It’ll probably happen, depending on how much sleep I get tonight and how whiny I feel in the morning.

I am beyond excited that I get to meet Lil Bub and her dude in person in a couple of weeks! The work they do to raise money and awareness for animals with special needs is unparalleled, and they helped Tim and I break our Guinness World Record back in 2014, so the fact that I get to meet them in person finally is ridiculously thrilling for me. Plus, I have nothing but admiration and awe for Bub’s fierce determination and incredible adaptability – along with her dude Mike’s unending love and perseverance – in getting her to the place she is at now, health-wise alone! It’s insane! They said she wouldn’t be able to walk, and yet now she can run, and climb and jump! What?! Science and magic, indeed. I love that little critter. Bub’s a beast at life.

New TV shows on my watch list are The Catch (of which I’ve seen and enjoyed the first episode), and possibly The Path (of which I have recorded but not yet watched). Because, you know, I don’t have enough on my watch list as it is. Constantly freaking behind. Blah.

AND what is up with everything I watch ending after this season?! I mean, not everything everything, but still a lot! Already gone are Haven, Continuum, Lost Girl…Defiance? I think Defiance is done. Motive is ending. Rizzoli and Isles is ending. I can’t even remember what else.

Maybe I am just tired of saying goodbye.

Same with celebrity deaths, though I have been less affected by most of them this year than many people. Alan Rickman was a pretty big one for me. And Patty Duke – I think I am still processing that one. When I was younger, I dreamed of marrying Sean Astin – in part because GOONIES, and in part because I wanted Patty Duke to be my mother-in-law. She and my mom would have gotten along great, and my mom would have been thrilled to have a friend who was even shorter than she is! As I got older and Sean married someone else (no hard feelings – he wouldn’t even meet me until a few years ago), I decided there should just be a way to adopt more parents for ourselves. There’s no limit on the number of children people can have or adopt, so there shouldn’t be a limit on the number of parents one can have, either. At least as far as paternal-like friends go.

I don’t know. I just really adored everything I learned about that woman. I wanted to know her. I wanted to be her. I wanted to learn from her. I wanted to just be around her and hang out and try to make her laugh. She just seemed like such a true and complete person, even when she was struggling to feel that way herself. Maybe especially then, because no matter what, she never gave up. She always fought for something better. She always fought to be better. I want that kind of energy in my life; that kind of inspiration.

Which, I know, can really only be provided by me.

But I’ll sure miss having her there, off in the distance, to look to when I feel like I’m losing my way.

I’ll miss having the dream of knowing the real Patty Duke to hold on to. Guess I’ll hold the memory of the dream instead.

Too Much Of A Good Thing

I don’t know, guys. I am not feeling great on any level these days, really.

Do you ever get a little overwhelmed with life, but realize it’s kind of your own fault for wanting to do things you like to do, even if there’s not enough time, money and/or energy to do them?

I’m still trying to recover from Sunday’s massive CSA night. It’s now Friday, and I’m still so exhausted that I trip over nothing – nothing but the fact that I just didn’t life my foot up high enough while walking! What the hell is THAT about?! I mean, technically I know what it’s about, but at the same time, seriously? I can’t consistently lift my feet enough to walk? That goes beyond simply dragging my feet. It’s a level of constant fatigue that I’ve not known long enough or often enough to be used to yet.

Tonight is the usual Friday night Date Night with the girls (and possibly Austin), but it’s also the beginning of Toronto Comicon weekend, for which Mind Reels has been granted media access. This year it’s for the entire weekend, which we’ve never had before, and I’m crazy excited about that! Yet part of me is also, like, when am I ever going to sleep again? Comicon all weekend and then back to work on Monday.

That’s not to say that I don’t sleep at all, merely that I haven’t gotten enough sleep in a very long time. I’m not even sure it’s possible to get enough, really, as this whole disease and MS medication combination has made days much harder to get through than I remember them being. For the most part, it’s totally manageable, but the problem comes more when a)I’m sick or have recently been sick, and b) when I overdo things to the point of making myself more tired than usual. Everything takes longer to recover from now. I am still fighting the sinus cold from two weeks ago (I have just started getting a hint of my sense of smell back as of this morning), for example. And because I’ve had long days every day since Sunday night’s CSA gala, I haven’t had a chance to get enough rest to get back up to my normal level of tired. Throw in a time change and I’m kind of a mess.

I might be running mostly on adrenaline, really, because so much is happening that I am excited about and eager for that I have a hard time slowing down. The less spare time I have to do other things, the more I try to fit them in. I got some wool and felting needles last night after work. But when I got home, after all the regular things were done, I had a billion dishes to do. So that was my night. I got the supplies, but pretty much put them away as soon as I got home, because there wasn’t any time left to experiment with them. Even then, I was still in bed later than I would have liked, so today has been a bit more of a struggle so far. BUT it’s also really busy, so I’m ploughing through as best I can. The urgency of being busy keeps me going.

But it also stresses me out.

It’s weird to be so excited about so many things, but to also be so stressed out by those same many things. It’s like an emotional roller-coaster, but more of an invisible one, or imaginary one, because I’m still doing things. I’m still happy to do things. And they are mostly all things I want to do, not just have to do. I even enjoy most of them.

Every so often, though, I have to check myself and go, “Why are you so upset right now? How can you be happy and upset at the same time, about the same stuff?”

Sometimes brains don’t really make much sense.

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.