Friday, August 10, 2018

summer off...

Two months since my last update, and my summer off has been lazy, sleepy, slow...

The purpose of taking the summer off was to decompress and de-stress. To focus on taking care of myself and my health.

The first few weeks were downright weird. I didn't know what to do with myself. It's very strange going from the constant overdrive of self-employed go-go-go-go non-stop working seven days per week to a sudden. stop.

Just nothing. I had nothing to do. Nowhere to be. No schedule. No obligations. I kept feeling like I should be somewhere, like I should be doing something. And the sudden mental shift. For five years every spare minute had been focused on "should be working on my business" and now suddenly that's not there anymore, and the world is just... quiet. I kept looking for a new project to start, or a new business, or a new....? It took me a few weeks to just relax.

And then I over-relaxed. Or something. Napping, reading, hiking, walking, running. Learning how to sail. That's all good stuff, but I was finding in July that I was spending too much time alone, and getting very lonely and sad. Part of that was my medication (it comes in clusters, along with my partials). Part of it was that I was spending too much time in my house by myself, and on facebook.

I find that now that I can nap every day, I do. There was one day last week where I took three naps in one day. That's how tired I am. That's what my medications do to me. Even though I'm not working, not doing anything except reading and napping, I'm exhausted all the time.

Sometime in the last few weeks I unconsciously made a shift. Suddenly I started thinking about hiring a registered dietitian and a physical trainer, about joining a gym and starting a training program. I didn't realize until yesterday that this is a shift from mental recovery to physical recovery. This is a good thing. It means that I'm ready to start moving forward.

So I'm starting consultations with an RD to see if there's anything I can do in my diet to offset the effects of my medications, to help me feel better. And I've joined the local gym. Maybe I will hire a trainer (probably not until I have an income again).

And I've started looking for a new job.  Can't just sit around forever. :)

Oh, I'm also still waiting for the referral to a new neurologist. But that takes months... no word yet.

Monday, June 4, 2018

"are you a long distance runner?"

Recently, as I was getting ready to go for a run, someone I had only recently met asked if I was a long distance runner. Innocent question, but for me it was questioning my identity. I stopped for a second--how do I answer this? Is it a yes? No? It's been three years since I did any long distances. "Once an ultra runner, always an ultra runner...?" Maybe? Do I mention why I'm not doing long distances these days? Why do I feel the need to justify myself? So I just said, "I used to be," and left it at that. But that answer left me sad and dissatisfied. Am I (still) a long distance runner?

I keep telling myself I will get back to it, and I keep finding myself unable to do it. Every run is a struggle still, a battle between my low energy level, lack of fitness, lack of time, too much stress, etc.

Then asking myself: am I just making excuses? How much is legitimately because of my illness, meds and the situation, and how much do I just need to push through the hard part and make it happen?

And deep inside the ultra runner's heart is that pulse: just keep going. You'll get there.

Grieving Mindfully
A few weeks ago when I was really struggling I picked up a book called "Grieving Mindfully", by Sameet M. Kumar. I feel as though I have lost so much since this illness started. Running isn't just a hobby. It's my primary source of health, fun, stress-relief, and social activity. My running friends have always been my primary community, and without that I have felt isolated and left out; I see their photos and activities on facebook and I'm not with them and I feel alone (and sometimes even resentful). They're off doing what I wish I was doing, and I want to be doing it with them. And now the illness has taken away my business too, which I have loved and nurtured for the past five years (more about that in a minute). What's left, and where do I go from here? So I picked up this book because it was the only one in the store that talked about grief more broadly than just losing a loved one--it includes other kinds of grief and loss too--and because I started crying in the bookstore as I was reading the introduction. Regarding the "who am I?" question, I found this piece to be particularly potent:

We grieve whenever an anchor in our understanding of our identity is lost. Picture your identity as a necklace of precious stones that comes undone and needs to be restrung. If some stones are lost, new ones must be added to replace the old ones. Grief can be understood as the process of picking up the pieces of your identity (the stones) without the help of someone you had assumed would always be there, or without a relationship that was a crucial part of your life (the string). Grief is the process of finding out who you are in a world that is barely recognizable because of the tremendous change that has taken place. You may not be able to answer the question, 'Who am I?' for a long time after your loss.

I do recommend the book for anyone who is going through any kind of grief or loss...

And some news...

Now on to my biggest news. I mentioned above that my illness is taking away my business. The truth is that my business has been struggling ever since I got sick because I have not been able to give it the time and energy that it needs, especially given the bad timing of everything--which of course I could not have changed or controlled. So after long deliberation I have come to the difficult conclusion that I need to stop struggling and stressing over it, and I need to put my health first. So I am selling my practice. This is difficult because I love what I do and I love my clients, and yes, it is a loss and I am grieving that too. But it is the right thing.

And as ever, I'm so incredibly grateful for the people in my life who have walked with me through this. Most specifically in this case, Joanne, a beautiful example of someone from my running community who knows me and my business well enough to reassure me that it is the right thing to do. But also when I said that giving up my business felt like a DNF, she told me that "It's ok to choose a DNF when there is something greater at stake; even the pros do that." Thank you Jo-Jo!

The good news is that this is going to allow me to take some much-needed TIME OFF! Actual, real time off. No work for awhile. My plan for the summer is to read, run, hike, nap, and take some sailing lessons! :) And hopefully during that time get a new neurologist...

Thursday, April 12, 2018

Random Updates

Doctor Changes
As I mentioned before, I've asked for a referral to a new neurologist because my old one is crapping out on me (still waiting for that, but it will take months). Then yesterday I got a letter in the mail that my GP is moving to the Island!! So I'm losing him too. :( I hope his replacement is ok, because I love my GP. He's the good one.... :(

A few weeks ago I was put on antibiotics for an injury. It's the first time I've been put on antibiotics since being on AEDs. Big mistake. It was a walk-in clinic doctor and I told her which meds I'm already on and to make sure it's compatible. She did not take any time to check, but simply said, "this one is really gentle" (my GP would have double checked...). She gave me Cephalexin. I couldn't even finish the prescription; I had a massive cluster of very intense partials while on the Cephalexin. Looked it up and sure enough, it's in a class of antibiotics called Cephalosporins, which can lower the seizure threshold. Apparently it's a relatively rare conflict, but it does happen. As soon as I stopped taking it, the partials stopped again. So now I know: antibiotics = bad. And don't trust walk-in clinic doctors. 

I've been under an enormous amount of stress lately. I don't even know where to start so I won't get into it, but it's not good for my health. I have a plan and am going to make some changes to my life to get the stress under control. In the meantime, I've been focusing on self care. I've also started seeing a counselor. This was recommended to me a long time ago, but I've only recently started, because I happened to meet one who specializes in people who have chronic illnesses. When I met her and she told me what she does, I was shocked. There are counselors who specialize in people with chronic illnesses?! I wish I'd known this in the beginning, when it all started. Interestingly, she had been wondering about how to expand her practice. I told her she should be partnering with the doctors' offices, because I wish someone would have told me in the very beginning, when everything was new and terrifying. I wish my neurologist would have handed me a counselor's card and said, "here's someone you can talk to about this."

Aside from that... just plugging on. My next neuro appointment has been pushed back to May now (they've now changed it THREE times) so nothing else to tell.

Sunday, March 11, 2018

One Year!

Today marks one year since my last generalized seizure. :)

I also haven't had any partials since Christmas day, which is a record at 11 weeks (knock on wood--whenever I say that, I start having them again...).

So that means my current med combination is working, as far as that goes.

That does NOT include the Lamotrigine, which is the one that was making me sick a couple of months ago, and which I stopped taking.

I do occasionally still have mild symptoms which are difficult to describe, but which I would call "waves" of activity in my brain which pass without materializing into a partial seizure. I can feel a weirdness or a familiarity or something else indescribable and then it passes without developing.

My biggest challenge right now is the stress in my life, which of course is not good for my health in general and can be a trigger for seizures in particular. I am working on a plan to change some things up and reduce my stress load. Also working on practicing more and better self care.

Still waiting on the new neuro referral, but I expect that to take at least 4-5 months, if not longer.

Wednesday, February 28, 2018

One Foot in Front of the Other.

The last post I did was when I was just starting on the lamotrigine. That didn't even last two weeks. It started making me sick after only 9 days. By day 13 I stopped taking it. I was getting the flu symptoms just like with the very first med I had had (the Carbamazepine)... the same flu symptoms which are a precursor to the death rash. I called my neurologist's office to tell them what was happening and get their advice, but they did not call me back for an entire month, and in the meantime I just used my best judgment and stopped taking it. I even waited a couple of weeks and tried again, thinking that maybe if I took it slowly I would be able to make it work (that's how badly I wanted this one to work). But after only a single dose, I began getting feverish and flu-y again. So that was that.

Speaking of taking a month to call me back, it looks like I am going to have to get a new neurologist. When the receptionist did finally call me back, she simply asked whether the problem had "resolved itself". I said yes, it resolved itself because I stopped taking the medication (!). She then told me that my neuro is dramatically cutting back his hours and is only going to be available part time, which is why it took so long to call me back. Then this week they called me again to push back my April appointment by two weeks and to tell me that from now on he will only be available two days per week. So basically, he's not available. And given that I'm still trying to figure out the right meds and I need someone who is around on a regular basis to help me do that, I need a neurologist who is around. Apparently I have to get a new referral, and I am supposed to do that through my GP. Very annoying. The receptionist said that there will be a 4+ month wait list for a new neurologist... which I don't think is bad given that it takes 4+ months to see my OWN neurologist anyway! In the meantime I'm running out of all of my prescriptions and can't get in to see him... thank goodness for the pharmacists and a good GP.

In other news, I have had a few rough weeks where I have felt very discouraged and burned out. I'm now working two full time jobs just to try to get my life and business back on track. That's really difficult and I'm exhausted all the time and trying to figure out how this is going to work, and how long I can manage that. My health can't handle this for long and my anxiety levels have been extremely high.

On the plus side, I've recently met an inspiring new friend who has been to hell and back in his own life (much worse than mine) and who has been talking me through the past couple of weeks. He's been strongly encouraging me to get some counseling to help me deal with everything. Incidentally, I just recently also met a counselor who specialises in people with chronic illnesses. So I'm going to start seeing her and hopefully she can help me work through some of the stress and anxiety and burnout and figure out where to go from here.

And yesterday as I was filling up my car at the gas station, I was overcome with an enormous sense of gratitude. It wasn't so long ago that I wasn't allowed to drive and was so broke that I couldn't fill up my car anyway. Now I'm driving and have a full tank of gas. So there is much to be grateful for.

One foot in front of the other.

Thursday, January 4, 2018

New Year, New Medication!

It's hard to believe that it's been two years already since I tried my first anti-seizure medication. I only lasted six weeks on that first one, during which time I cried nearly every day and landed in the ER twice. I ended up having to come off of it when I developed a rash. It wasn't the Death Rash, but any rash with these meds is cause for discontinuing them.

When I last saw my neuro a few months ago we had talked about reducing my Keppra because it's the one that makes me depressed. However, I'm still having some partials (0-5/month) so before we can reduce it we have to increase something else. So as of today we're trying something new: Lamotrigine.

But this is another one that can cause the Death Rash, so I have to start it very gradually. It will take 8 weeks to get up to therapeutic dose. In the meantime I will stay on all three meds (!) and then as long as I don't develop a rash or any other major issues, I can start to decrease the Keppra until it's gone.

The ultimate goal, he said today, is to eventually only be on one med. Though I personally would be ok with staying on two as long as they're working and not making me miserable.

I asked him today whether it's reasonable to aim for zero partials altogether, or whether I will always have a few here and there. He said it's reasonable to aim for zero, so that's good news.

I also mentioned that I had been thinking back to some of the thoughts, experiences, and things that were happening before the meds were working... some of the more interesting experiences and weird things that were going on in my brain. I kind of miss them, only because they were rather fascinating (not that I want them back). Of course I don't want to go back to having seizures (and he said good, because the seizures aren't good for me!) but at the same time some of the things that were popping up--like the early childhood memories--were pretty interesting, and have stopped now since the meds are working. But that is the trade-off, I suppose.

Wish me luck with the new med--no rashes and no bad side effects! He said it is "well tolerated", but he says that about all of the ones that we try.

Thursday, November 16, 2017

All these strands of love

I was writing someone an email, trying to describe and explain how this journey has been, and now I feel the need to share with y'all what I said about you:

The past two (and a bit) years have been the hardest of my life.

I don't believe in a sentient universe, but if I did I would be asking it what the hell I've done to deserve how shitty the last two years have been. My illness, the doctors, tests, hospitals, meds, seizures, feeling shitty ALL the time, exhausted ALL the time, sad ALL the time. and scared.... so afraid.  Never knowing if or when things will get better, if or when I might have a seizure today or in public or at work (again). What it might do to my life over the long term. Not being able to drive. Not being able to work. Not being able to fucking buy groceries. My income dropping off to virtually zero, for months. Getting suicidal (repeatedly). Spending days/weeks in bed, crying. And The Flood, and being displaced, and having to move (twice), and my rent going up right when my income was dropping off and I wasn't working and wasn't driving. More hospital visits, more ambulances, more tests, more meds. I'm the crazy girl crying on public transit and then fixing her make-up in the bathroom at work, trying to hold things together. Then I go from not working to working seven days/week just to get my income back on track, and spinning my wheels because my business is stagnating, and stressing every. fucking. month. about how I'm going to pay my rent. (and this week my car broke down and I can't afford to fix it... so I'm back to transit...)

And in all of that, there are only two things keeping me from going completely off the rails:
- my own inner strength, which is currently at an all time low
- my friends and family. I've lost some in the process. Some of them have blatantly abandoned me. But the rest have been amazing. They have gone with me to the hospital and in the ambulance. They have driven me to the grocery store. They have come when I asked for company. They have had me over for dinner. They have gone with me to the forest. They have comforted me when I'm sad. They've taken me for coffee, and given me business advice. They have helped me financially. They have inspired me. They have followed my blog and given me so much support and walked with me for the past two years and told me that I'm strong and that I can do this. Right now, at this time, it's mostly one-sided. I have nothing to give them right now. I need them to hold me up, and they are doing it, and I'm so incredibly grateful to them. This is all new to me. Before this I was always so independent and strong; I never needed anyone else (I thought). I always took care of myself. I have had to learn how to ask for help, and how to accept it when offered. I've had to learn how to be vulnerable, and my community has wrapped me up and held me together with all of these strands of love. 

Thank you.