Vindicated

Today's song came on while I was running today:

It has long been in my playlist and has given me a boost many, many times.


Hope dangles on a string, like slow-spinning redemption
winding in and winding out, the shine of it has caught my eye
And roped me in so mesmerizing, so hypnotizing
I am captivated, I am vindicated


Today is two months with no partials!


That's a major milestone. I'm not out of the woods yet (not by a long shot) but I'm moving in the right direction.


And now that I'm finally past the exhaustion/fatigue/depression phases of the latest medication increase, I'm actually starting to feel good again. Energy is better and I'm feeling more positive.


Having decided to be done with the crappy year that 2016 has been, I personally celebrated New Year's on Nov 1 instead of January 1. Starting over. Feeling better. Setting new goals and getting myself back on track.


I've run twice so far this week, Sunday and today. My goal is to do Tues/Thurs/Sat/Sun for awhile, until I get some fitness back. Maybe do some short races in the early spring, just to give me some short-term goals.


Some thoughts on today's run:


For awhile I've been noticing that my balance and/or proprioception seem to be a bit off. Both are potentially neurologically related, which has me wondering if it's connected to my neuro issues. I mostly notice it when I'm running and when I'm descending staircases. I feel as though I don't trust my feet to land where they're supposed to, and on stairs I'll hang on to the railing and watch my feet to make sure they're landing properly. I don't know if this is a neuro thing or if it's because of having sprained my ankle so badly (twice) last fall, and I've been really cautious and paranoid about landing on it wrong again. I'm going to mention it to the neuro though and see what he thinks. Maybe there's a connection, maybe it's my imagination--either way it won't change what I do because running and walking can only make something like that better, not worse.


Also, today I passed one man in a wheelchair and a blind man walking with a cane. It made me grateful that even though it's been a tough time, I still can run. As long as I still can, I will.


This week's gratitude shout-out goes to my family. I have mentioned it before, but my family has been so incredibly supportive through this whole journey, in various ways. I'm so incredibly glad to have you guys. I can't imagine trying to do this on my own. <3

dragging

I've started to write this post three times over the past week and a half, but haven't known what to say.

I would just like to stop being constantly exhausted, sad, and stressed.

Not sleeping properly, not eating properly (all fast food and convenience food since the flood a few weeks ago). I want to sleep in my own bed and have my own space again. I want my car back. I want my health back. I want to move back to the north shore.

Can't control any of it, so I just keep telling myself it will get better....  to be honest I don't always believe myself on that, but what else is there to do?

update: There seems to be a pattern. The depression comes roughly 6 weeks after each increase in the meds. I don't know why it takes 6 weeks to hit, but that's what it seems to be. The good news is that it passes. The bad news is that I'm now at the highest dose so if it doesn't "work" I have to try a different med, starting all over again with new side effects. :/

One Year

One year ago today, I had my first four partial seizures.

Of course, I didn't know at the time that that's what was happening, but it has changed my life.

In that year, I've had blood work done 9 times. Three trips to the ER (one in an ambulance). Two generalized seizures. Two different medications. CT, MRI, EEG, ECG.

Stopped driving, stopped alcohol, stopped coffee.

Stress... oh the stress. Never knowing when my symptoms will return or how bad they will be this time. Will I end up in the hospital again? Will I ever get it controlled enough to be able to drive again? How many meds will I have to try before I get it managed? (If ever?) How do I build my business when some days I can hardly function? Am I having seizures in my sleep? Not sure but sometimes I wake up feeling like I did.

And then the emotional and physical toll. I hardly remember anything that happened in the weeks just before and just after my generalized seizures. It's like my brain was in a fog for that whole month; there were entire conversations and meetings that I don't remember having. Exhaustion. Depression. Reduced ability to cope with the stupid little everyday things that shouldn't bother me. I've cried three times this week over things that shouldn't be making me cry. Why? Because my meds were increased again last week and that makes me emotional and tired.

And through all of that, the support of all of you has been what has kept me going (my own stubbornness helps too....).

This morning I was planning to name all of the people who have supported and helped me in the past year, but the list is so long and I'm afraid of missing people. Suffice it to say that I do not take it for granted and I'm incredibly grateful for all of you. I've learned who my true friends are. :)

But I will continue naming the most current/recent gratitudes:

- Roberto - for being a constant breath of fresh air, always making me smile
- Cory - for telling me I'm tough; and when I argued that, for saying "you don't see you" (this also made me cry, but I couldn't tell you that at the time)
- Danielle - for your companionship and endless hugs
- Graeme and Fritz - for giving me a safe space and laughs and for encouraging (at least tolerating) my requests for things like "orange juice that looks like a screwdriver" ;)
- my SamSam for his love, loyalty, and doggy cuddles

Onward!

my "fake screwdriver"

Goodbye, Wine

A few weeks ago I gave up coffee. I hadn't planned to, but one day I just didn't happen to have any and the next I woke up and thought, "I should just stop drinking it." I've never really liked coffee... I only drank it for the caffeine. Caffeine can lower the seizure threshold (i.e., make me more susceptible). I'm better off without it. After a few days of headaches I was good to go, and I don't miss it. I can always have decaf with my PSL, right? ;)

Fast forward to this week. I've never been a big drinker, but I've always had a good tolerance for alcohol and I do love a glass of wine. But ever since June I have dramatically reduced my alcohol consumption for the same reason I gave up coffee: alcohol lowers the seizure threshold. It can also adversely interact with my medications and reduce their efficacy.

To be clear, neither the doctor nor the pharmacist told me not to drink alcohol while on these meds, but I was reducing anyway.

Even so, it seemed to be interacting. And then last weekend I had a few more drinks than normal. And this week I had five partials over two days. Coincidence? Probably not. Everything I have read online and the people I have chatted with have agreed: it's best just to cut out the alcohol altogether, at least until I'm stable.

In addition, my meds are increasing again. I saw the neuro yesterday and told him that while I've been mostly clear, I'm not 100% yet and am ok with increasing the meds. I would rather do that than try a different medication with unknown reactions. He agreed. So we're upping the Levetiracetam to 3000mg/day, which is the highest recommended dosage. If this still does not work, we will have to try a different med... so cross your fingers that this dosage does the trick.

Meanwhile, still no driving until further notice. :(

As much as I will miss my wine, driving and stabilizing are more important.

Various Storms and Saints

Last week I shared about what a hard time I was going through (thank you for all your support).

This week I had a bit of a breakthrough, while listening to this song--so again, you can listen while you read (sorry for the live version--couldn't find an album version on youtube)

It's one of those songs I've heard many times but hadn't really listened to until now. The line that caught my attention was:

Don't make the mountain your enemy; get out, get up there instead.

I'm not usually the kind of person to shy away from a challenge, but for nearly a year this one has beaten me down and I realize now that I was making the mountain my enemy. Not only is that not helpful, but it's not my style. I love my mountains. I love the challenge. I love achieving the summit, and the views, and the healing, and the adventure.

Also, I wasn't completely honest with you last week. I had at least three partials over five days (possibly more if they were happening while I was sleeping). That is why I was SO discouraged. I was keeping that to myself because I wasn't sure whether I was going to tell the doctor about it, but I've decided that I need to be honest. 

People just untie themselves, uncurling like flowers

So here I am:

• I accept that I have a chronic health condition that can be managed, but not cured
• I accept that I will be on medications for awhile, potentially forever
• I accept that those medications will fuck with my head sometimes, will make me depressed sometimes, will make me tired sometimes
• I accept that in those days or weeks when I am tired and sad, I can give myself a break and have some downtime
• I accept that I can't go 100% all the time
• I accept that I can't drive for awhile (ever?)
• I accept that not everyone in my life will understand
• I will love my body and brain
• I will focus on the things I can control
• One step at a time, I will summit this mountain. And I'll build my business. And I'll build my life, whatever it takes.

This week's gratitudes to go Lianne and Andy, for getting out on the trails with me. :)

Straight Lines

This morning on the bus to the office I listened to this song on repeat--so you can listen while you read my post: 

I won't lie, it's been a rough week. Rough month, but mostly rough week. I posted before that I was in a bit of a funk, but this week it took a turn toward full-on depression. Brain fog. Exhaustion. Low energy. Anxiety. Many tears.

This happened before, shortly after I started on the Levetiracetam. It lasted a few days and then passed. This time I'm not even sure if it's the med or if it's just life in general. Probably both.

Today feels a bit better but we'll see what happens.

Part of the problem is that I've been feeling as though my episodes are coming back (or at least trying to). It's mostly been when I'm sleeping. I've been dreaming about having them, and then it wakes me up and I feel like I've had one. But I don't know if I actually did or if I just dreamed it. Then headache and general feelings of crappiness follow.

Last night instead of dreaming about seizures I dreamed that I was driving in my car but I had no control over the car and crashed through forests and then into water. Then woke up.

General theme of my life right now... no control. I said to someone in a text the other day that I feel as though every area of my life sucks right now, so I put everything I can into my business because that's the one thing I can at least partially control. 

In any case, it's always the people around me propping me up, so I am going to start naming names in these blog posts. Hopefully over time everyone who has supported will get a shout out (but if I miss you please blame the meds and the brain fog!). This week's gratitudes are for:

- Danielle, for letting me cry to you on the phone and telling me to call sooner next time
- Graeme, for making me laugh and distracting me with interesting discussion (let's avoid the nihilism next time though!)
- Claudie, for giving me permission to lose it the next time someone tells me I "look good" or "everything is going so well"
- Lisa, for telling me I'm strong when it's the last thing I feel

I love you guys; thank you. "If you keep talking, then I'll keep walking in straight lines."

Six weeks and counting

Yesterday marked six weeks of no episodes, not even little ones. This is my longest stretch now since this started and it gives me hope that the meds are working.

But I'm not out of the woods. There is always that nagging thought in the back of my mind that it could start back up again at any time. Anyone who hasn't been through this might consider that negativity, but in fact it's simply realistic. I've read about and heard from so many people whose meds worked for awhile... months, even years, and then randomly stopped working one day. So there is never an end point, only management and hoping for the best.

Also I've been in a bit of a funk for the past couple of weeks. I don't know if it's because of my meds or if it's the other stuff going on in my life, but I've been feeling sad basically every day for the past two weeks. And that makes me tired. And that makes me just want to curl up on the couch and watch netflix... not good for running my business.

Still spending 4+ hours/day on transit (huge thanks to those of you who have given and/or offered rides!). Yesterday I decided to work at home. Didn't get much work done because I was too tired and sad, but it was a success to avoid setting foot on transit for one day.

I apologize for a bit of a downer post. I am definitely happy to see the six-week mark pass, and hopeful that I will be able to drive again soon.