Life & Con Crud

Ah, there it is. The dull scratchy pain at the back of my throat; the vague tightening in my chest; the sense that my body is a little more broken than usual.

Con Crud is settling in.

Next weekend is starting to look like it’s going to be just as busy, too. I’m basically never going to sleep again!

Patreon page is up and running at http://www.patreon.com/TheMindReels

I’m trying to get as many people as possible to sponsor us for $2 per month, as $24 per year doesn’t seem like that much, yet would make a ridiculous difference for us if enough people signed up! We’ll see.

I’m also sitting on yet another amazing/geeky/artistic idea that I need to put out into the world before someone else does. The trouble, of course, is that I have none of the skills required to bring it about. I either need to learn to draw, or befriend an artist type who can help bring my seedling ideas to a more concrete fruition. Because damn – I should be pretty rich by now.

Anyway.

The fog brain is still going strong today. Definitely struggling. Hopefully I can get to bed – and sleep – at a ridiculously early hour tonight and feel somewhat refreshed by morning. I’ve got stuff to do!

Lists and Wishes

I feel like I’m getting a lot done today, but at the same time, I feel like it’s all happening really slowly. Like I could do more if everything else could keep up with my brain, or something.

Which is silly, really, because my brain isn’t all that quick on the uptake or anything anymore. Keeping up with it shouldn’t be that difficult for, say, technology. Or dolphins. The rest of my body is, of course, another matter entirely, but still. I feel like everything has slowed down today, and yet there is a ton of work still to be done.

I actually have to make lists all the time, because I forget things. I’ve even started a list for my upcoming weekend, of everything I want and/or have to get done. I say “started” a list, because I’m not sure it’ll ever be complete. It’s already ridiculously long, but stuff keeps either coming up, or I remember to add it to the list because I’ve apparently already forgotten it at least once.

I even forgot to start making the list until last night.

Speaking of last night, I had a pretty excellent conversation with one of my closest friends via text before I went to bed. I wish we could talk in person like that, actually. And while there’s still much not said or discussed, it was closer to the kind of conversation we used to have, and I’ve missed it a lot. Even when I can’t find the words I want to express myself, I like the struggle to search for them. It means it matters to me that I get it right, or as close to right as I can. It means I’m trying because it’s important to me, and I don’t really do that very often. Not recently, anyway.

That conversation was probably the main reason why I didn’t even get up to pee in the night, which I always do. It made me tired in a good way, and I ended up sleeping right through. I don’t remember waking up at all, and at the moment I can’t remember anything I may or may not have dreamed. I was out.

Okay, those double chocolate chip cookies with peanut butter in the middle from Tim Horton’s are ridiculously delicious. I got one earlier to have after I ate my lunch today and daaaaamn! Distractingly good!

So much I want to do, guys. Things coming up that I’m not sure I can afford, several things I want to create in some form or another. I wish there was a way to take a kind of sabbatical from life, to work on other things and see what you can accomplish over even a few months away from your daily routine. Maybe I’d take a class. Maybe I’d start a side business. Or volunteer. Or sit at the zoo everyday and learn from the animals. Or go on a trip and learn from animals in the wild. I’d write more. I’d read more. I’d launch Mind Reels and SmitheeTV into the stratosphere. I’d spoil the critters who live with me just by being there with them. Maybe I’d even shoot my short film. I’d do everything right, if I had the time. And the money. Even if I didn’t have quite enough of either, I’d still be creative enough to do everything well.

It’s just so hard to stay on top of anything extra when I’m up for 2 hours before I have to leave for work, then need about as much time when I get home before I go to bed. And I go to bed crazy early now, if I can. Not because I’m no longer a night person, but I am really really not a morning person anymore. I need more sleep just to function, and the main reason I even got out of bed and moving as early as I did this morning was because I had to pee. Because I’d had a good text conversation with my friend before I fell asleep and it tired me out enough to sleep until my alarm went off. One little thing like that and the effect trickled down into today.

As tired as I am, though, the good effects from that convo also trickled down into today, which doesn’t often happen with trickle-down situations.

That means it was worth it.

Out of the Minds of Babes

I don’t really remember ever wondering where babies came from.

I mean, obviously they came from the mama’s belly. She grew them in there like potatoes, or something.

What I pondered over for some time, instead, was why a baby would look anything like its father. I couldn’t for the life of me figure out what the father had to do with any of it, yet people were constatly talking about how much some baby or other resembled their father. Once it had been alive for awhile, I could see how some would grow to take on certain traits or whatever, because people and pets start to look like each other all the time. But as a newborn baby? Why would the potato look like the father at all, let alone MORE like him than the mama who grew it? Made zero sense.

So I gave it some thought, and what I came up with (keep in mind my skull likely hadn’t fully formed yet) was that kissing must be how some of the dad could transfer over to the baby’s appearance. Clearly that was the only physical contact that moms and dads had with one another (actually, I briefly considered some sort of airborne transfer while they were sleeping next to one another every night, but disposed of that theory because it seemed too far-fetched, even to my young self). Pleased with my initial theory, I asked my mom about it. However, the way she said, “um…noooo” gave me the sense that she didn’t want to talk about it, so I dropped the subject and went back to my ponderings.

Eventually I did figure it out.

It’s funny how brains work, especially for children when they are learning everything about just existing in the world around them. I’m not sure, but I feel like I actually vocalized fewer questions than many kids seem to. I think I wanted to figure it all out on my own, if possible. I’m sure I pestered my parents for answers as much as the next kid, but on the inside it felt like I was working more inside my mind than I was speaking things out loud.

I remember thinking for the longest time that one of my great-grandmothers was actually named GRAPE-grandma, because that’s what it had sounded like when other people said it, and she often wore a purple dress. At least, my only memory of her is sitting in her chair wearing a purple dress when we arrived and went to hug her. Actually, she may have worn one to a family reunion, too. She may never have worn purple in real life, but that’s how she’s always existed in my memory. Grape-grandma. Whenever I got a glass of grape juice from the fridge I’d think of her.

One year I convinced myself that, while Santa Clause might not be real, the Easter Bunny most certainly was. See, I’d figured out the Santa thing, but while I was in – I want to say Georgia – over Easter one year, I was certain that I could hear everyone else asleep in their rooms while still hearing an extra “person” in the kitchen at one point during the night. Easter Eve, let’s call it. And naturally there was chocolate all over the place the next morning, so it must have been the Easter Bunny. Process of elimination, yo!

Even then, though, part of me wasn’t entirely sure I believed myself. I just wanted to believe. (cue X-Files theme).

What else? I had imaginary friends…I forget their names – Jody and…something? Both boys, a bit younger than me. And I think I pictured them as cartoons. I was also pretty confident in my invisible Smurf friends for awhile.

I wanted very badly to have some form of ESP, so I made myself some quiz cards with, like, the different shapes on them and such, but quickly learned that I could not, in fact, quiz myself very accurately. I’m too easy to fake out.

I think this card is…a triangle.”

(Turns over to see a circle)

I mean circle, I was actually thinking circle. What was I saying triangle for? Totally meant circle!”

I also was – and still am – quite skilled at mis-hearing song lyrics. Yet I dreamed of becoming a Mini Pop.

I was – and still am – a very big dork.

In other more current news, my #BowlForKidsSake team for BBBST has been registered! We are Esmer’s Lane-gels, and we’ll be rocking the lanes (with gutter balls, if you’re me) on Thursday March 3rd! Before then, however, we need to rasie as much as possible to help out the kiddos. If you have time, please consider a donation to the cause – no amount too small, trust me! – and even more importantly, please help spread the link around to everyone you know! There’s not a lot of time left, but I am confident in our communal super powers!

Here’s the link to my fundraising page: https://secure.e2rm.com/registrant/FundraisingPage.aspx?registrationID=3235990#.VrzBQHMc0ds.twitter&panel1-2

Please share!

Too Many Side Projects, Not Enough Side

It’s difficult to get anything done when you watch as much TV as I do.  A fair point, and one I’ll readily admit to.  I like my TV friends, though, and definitely require some downtime every day.  Some days more than others, but always as much as I can, because it just never seems to be enough, no matter what.

However, such downtime also gives my brain a chance to work on things while I’m not paying  attention, and the damned thing keeps coming  up with ideas.  Sometimes even ones that seem pretty good!

So, as I sit here watching stuff from my PVR, here’s a breakdown of some of the things I’m trying to work on these days:

  • this blog.  A post a day for a year is the intent/goal, so technically this counts as multi-tasking, right?
  • cut and post clips from 2014’s Guinness World Record attempt on the special YouTube channel I set up for it – and try to keep my poor old computer working long enough to get through it
  • work on setting up more interviews and other opportunities for The Mind Reels
  • continue processing rounds for the Reelie  Awards and work on how the actual awards show will go
  • finish crafting pitch to tun an unpublished novel into a TV series – for pitching practice
  • work on more crafts to sell through my Etsy shop, and promote the shop online
  • solve puzzles and mysteries contained in my first shipment from the Mysterious Package Company (okay, is one is more for fun)
  • make notes for possible children’s picture book I thought of this morning
  • work on a time-consuming yet awesome surprise for someone who may or may not read this, so I won’t say more here
  • get help making a sweet Halloween costume for Brody
  • send GWR codes to guests so they can order copies of the official Certificate of Participation, if they wish

And, you know, chores around the apartment, spend quality time with the critters I live with, go to the zoo, keep up with appointments, transfer more stuff from my iPhone to my Android phone, and nurse this stupid head/sinus cold so that it hopefully goes away quickly.

I should get started on some of that, but I also need to keep my PVR clear for new recordings. So maybe I’ll do a bit more work later.  Hopefully, my brain won’t come up with anything else before then!

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.