Victim Mode?

Recently I have been dealing with a situation where another professional has been treating one of my clients poorly and she had asked me to talk to him on her behalf. I spoke with him on the phone last week and he treated me just as poorly, to the point of attempting to bully and intimidate me over the phone; when that did not work, he hung up on me.

I went to my regional manager to discuss it with him and get his insight because he knows the person in question. He let me know that the person has been diagnosed with a terminal illness--and while that does not excuse treating people badly, it may explain some of the behaviours.

I let that sink in for a few minutes, and I felt some of my anger soften. And yet I know that we all choose our response to the things that happen to us. I said, "but I have a chronic illness, and so does [another leader in our company] and we don't take it out on everyone else." He responded, "and that's what makes you good people."

Granted, my illness is chronic, not terminal. It's not going to kill me (not statistically, at least... there is something called SUDEP but that's highly unlikely). 

Regarding our responses to what happens to us:

If anything, my illness has made me more empathetic to the plight of others, not less. I didn't get it before. I didn't understand illness before. I had always been healthy. I didn't know what it was like to always feel shitty and sick and exhausted, and yet still have to find a way to function. I didn't know what it was like feel betrayed by your own body. I didn't know what it was like to live with deep depression. Now people ask me "how are you?" and I never know how to answer them; my standard answer is, "It depends on the day."

And so it mystifies me when I see memes on facebook that pit one illness against another, like the one someone posted yesterday, which created an argument where one person's friends started attacking another because in their minds diabetes deserves public funding but addictions don't. And the vitriol that came out of that thread, and the personal attacks that were completely uncalled for, just like the bullying of the man I talked about before--it might be explained by the shitty situation a person is in, but it can't be justified. Going through a bad situation does not justify treating others around us like shit. My experience with one illness doesn't negate the experience of people with other illnesses.

Where's the empathy? I'm so absolutely, incredibly grateful for the care I've received for my epilepsy; why would I want to deny that care for ANY other illness, just because it's different from mine?

And whether I have a terminal illness or a chronic illness or I am perfectly healthy for the rest of my life, why waste ANY of my energy on this earth in victim mode?

I mean sure, I've had my share of "feel sorry for myself" days. But I can't stay there all the time. It is what it is; eventually I have to accept it and move forward. Taking it out on other people doesn't make anything better, only worse. The best thing I can do is focus on making myself better (as much as possible and realistic) and giving the rest away. I wouldn't deny anyone else the opportunity to do the same.

Adapting...?

It's been a month since we started increasing the Topamax from 200mg to 300mg. It was a 25mg increase each week for 4 weeks, so the increase just finished a little over a week ago. Overall it went well. I didn't feel all loopy and stoned like when I first went on the Topamax back in March. However, I still haven't been feeling well and I'm not really sure whether it's because of the meds or not. I think it must be.

The first few weeks I was really busy with work so I didn't have time to really pay attention to what was going on. It's only in the past two weeks that I've really noticed. Most of the time I feel pretty normal, but then I have these random times (a few hours each day, or just random times each day) where I just feel off. Like I need to go lay down, or I feel like I'm getting sick, or I feel like my partials are coming back, or something just feels wrong and I can't identify it. Last week I had one partial and I had 3 in September, but that's it since increasing the med so that is ok.

The biggest thing has been when I try to go for a run. I will feel ok for a bit and then I'll start to feel woozy/dizzy/off and I'll have to walk for a bit, or I'll feel like I'm going to have a partial so I'll walk until it passes, or I'll feel like I'm going to pass out and have to walk it off until it passes. It's got to be the med because this med is known to mess with body temperature, electrolytes, and make you stop sweating and overheat, etc... you're supposed to be careful with activity while taking it. So I've been paying attention to that while running. I've been making sure that I'm hydrated, paying attention to breathing, sweating, heat, etc. But even so, even with gentle, easy runs, I'm still feeling like crap.

I'm going to keep focusing on hydration and electrolytes and hope that it improves over the next few weeks as I continue to adapt to the new dose... it's still new. If it doesn't get better I'll talk to my neuro about it when I see him next (he's a runner too so that's helpful!).

Boring Update

Saw my neurologist today:

• had half a dozen or so partials in June
• half a dozen or so in August
• no generalized seizures since March 11, which means I'm 6 months clear on September 11 (four days from now)
• Which means I'm officially allowed to drive again as of Monday
• I did not mention to him that I've already started driving again this month (close enough ;)
• Next appointment in four months
• I told him I'm happy with the Topamax and since it's working well and we're close to getting rid of the partials I'd like to increase it a little, and he agreed, so we're upping it to 300mg instead of 200mg/day; he mentioned that it can impair cognitive function if we go too high. I said I haven't had any issues with it yet. It does seem to make me somewhat ADHD (lack of focus, inability to sit still, etc) on some days, but not all days. I haven't had trouble with memory or general functionality though, so I'm happy to keep going with it for now, and he said that's good. So we'll increase it and see how it goes. 
• I told him that I eventually want to decrease and/or discontinue the Keppra since that's the one that makes me depressed. He said that's fine and depending on how the next four months go we may decrease it on the next visit. That would be awesome. I'd rather be ADHD than depressed, any day of the week!

The Stress Test

Last week I read a book called The Stress Test, by Ian Robertson. It is about the physical effects of stress on the brain and was quite fascinating. It talked about why stress seems to break some people but strengthen others, and went into the neurological reasons for how stress can strengthen us and even make us smarter. Throughout the book I found myself feeling inspired and actually felt my own stress levels decreasing as I read. It was as if the past two years of the chronic stress I’ve been under suddenly have a purpose and I can see it as something good instead of something destructive. It might sound strange to put it that way, but it’s helpful to me and that’s what matters. It was almost funny, because I could feel my body physically relaxing as I was reading this book about stress, and feel my stress level decreasing because I was so inspired by it. All of this that I’ve been going through can make me stronger, smarter, more resilient in the long run. Just have to keep going. 

It's been awhile since I've given gratitude shout outs, so this week they're going to:

• Laura, who took me to Superstore after my recent meltdown over not being able to get groceries (seriously, you were the best thing that happened to me that week!)
• Everyone else who offered support in the wake of that meltdown--there were a lot of you, so thank you!
• my mom, who I have mentioned before but deserves another mention because she has consistently been my best supporter over the past two years!
• my mastermind group, which I don't think I've mentioned here before; we meet weekly to work on business and life, and it has been a consistent help and encouragement as I try to balance growing my business and managing my health and somehow holding it all together (they even tolerate me crying once in awhile!). That's my tribe! 

Mad at the World

I haven't updated in awhile and I guess that's a good thing because it means nothing is really happening.

I haven't had any partials since June and I'm only 5.5 weeks away from being officially allowed to drive again.

When people ask me how I'm doing, my default answer is that it depends on the day and I think the worst is over. My meds seem to be working. Overall I'm better than I was back in Jan/Feb/Mar. The last med change seems to have done the trick.

My main focus right now is getting my business (read: income) back on track because it went completely off the rails when I went off the rails in the fall/winter/spring.

Getting my business and income back on track, however, has been an utterly exhausting task. When you lose all your momentum, it's incredibly difficult to get that back, especially when you're not feeling 100%. I go from work to bed with not much else--very little social, very little running, few days off. I'm feeling pretty burned out most of the time, but plugging on, because what else can I do?

Case in point: I have no food in my house. Why? Because I wasn't getting paid for awhile. But this week I got paid, so I should go get some groceries. But when? And how? I can't drive my car. I could take the bus. Not only is lugging groceries on the bus a giant pain and time consuming, but just the thought of it when I'm already exhausted, mentally and physically, caused me to cry for twenty minutes last night. I literally sat in front of my computer crying because I had no food and couldn't bear the thought of going out on the bus to get some. I could walk to the store down the street but then I'm stuck with what I can fit in my backpack, which is what I pretty much do on a weekly basis. Still exhausting. I could ask a friend to drive me, and even that frustrates me, and I come back to being angry. Remember the days when I was healthy and could do whatever I wanted? Oh right, those days are gone. So last night I ate leftover pizza and watched netflix and went to bed with an empty fridge again. This morning I walked over to the store down the street and filled my backpack and my fridge is still empty and I'm still angry.

5.5 more weeks until I can drive again. Hopefully this time it lasts longer than 10 days.

Also, I'm going to ask my doctor to reduce the Levetiracetam and increase the Topiramate. Even though I've been feeling better overall, my mood is still affected (obvious, if you've read this blog post). I assume he'll be ok with that. My next appointment isn't until September though.

Grandma med boxes

Not much to tell these days, which is good news. My meds seem to be working. I'm feeling a LOT better than I was a few months ago. I've been on my current med mix since March (full dosage only about 6 weeks). Since the med change I've only had one partial and I'm feeling good. My energy levels are increasing, side effects decreasing. I still have days where I feel like I have ADHD (side effect of the Topiramate). And still many days where I just need to rest but that is also partially because I've been working my tail off to get my business back on track now that I'm feeling better.

Given all of that, I think I will probably stay on this med mix for awhile, as it's working better than any of the previous ones so far. As long as it keeps the partials away and I continue to feel good, I'll stay on it. It's still a bit early to say for sure, but so far so good.

For someone who always considered herself extremely healthy, I sometimes have to laugh at the cocktail of vitamins and medications I now take, and I thought I'd share:

The green pill box is for morning, and the purple is for evening. Here's the breakdown:

Morning -
2 x 500mg Levetiracetam (the long yellow pills buried in the bottom of the box)
1 x 100mg Topiramate
1 x B6
1 x B12
Progesterone cream (only at certain times of my cycle)
Palafer CF (only twice a week)
CBD oil (the second syringe) if I remember

Evening -
2 x 500mg Levetiracetam
1 x 100mg Topiramate
1 x Magnesium
CBD if I remember

Two years ago all I took was the Magneisum. How things have changed!

In other news, I'm also three months without alcohol..... :(

Epileptosaur

This is the most difficult post to write so far. Some of you have commented on my previous posts that you appreciate how candid and honest I am about how I feel, but this one cuts deep. Last night I was relating this story to a friend and I was embarrassed even to say the words out loud. Earlier in the day I couldn't say them without crying. But first, some background:

Over the past year and a half I have been getting to know other people with temporal lobe epilepsy through a facebook group. Some of them have talked about how they have faced discrimination from peers, employers, and even family members because of their epilepsy. For some of them, their illness has been a lifelong battle. Seizures in childhood can cause learning disabilities and developmental disabilities, which of course can then lead to social difficulties and anxieties. There is often bullying involved and social isolation. Like other disabilities, people with severe epilepsy may not be able to keep jobs or finish school, and they often face discrimination.

In that way I've been very lucky, because mine started late in life, was caught and treated early, and has been mild. I never had any learning problems growing up and even though I'm still building my business, I'm established in my life. Aside from being temporarily unable to drive and having to take some down time from work, this illness hasn't interfered too dramatically with my life. I haven't really thought of it as a "disability", though technically I could.

And then on Tuesday, something happened that dramatically shifted something inside of me.

Someone who had witnessed one of my generalized seizures, months ago, was angry at me on Tuesday morning.

I won't go into details, but he was angry and feeling powerless. And (as a witness wisely observed) because he was angry at me and feeling powerless, he picked on a moment in which I had been literally powerless--the moment when I had had a seizure in front of him--and turned it against me. He started calling me names ("Epileptosaur") and saying things like "keep me out of the splash zone next time".

I think I kept my composure in the moment (did I?) but I was completely shocked. Not only because I did not expect this kind of behaviour from this person, but also because it was the first time my epilepsy has been used against me. It's the first time in my life that I have been at the receiving end of that kind of treatment. I mean, I've been insulted a million times--I've been a youth worker for years--but this was different.

And wow, that hurt like hell. I don't know how else to say it.

This is why we teach kids not to go around making fun of people for things they can't control. This is why we model empathy and kindness and patience and love.

So today:

Be kind, for everyone you meet is fighting a hard battle.
Ian MacLaren