I’ve got my Google calendar. My whiteboard. And, on my refrigerator, my running calendar, the pet care calendar, and the CPAP PM calendar.
I still forget things.
I don’t meditate everyday or do my throat exercises. I didn’t mow the lawn on Friday or change the sheets on Saturday. I did finish my nonfiction and fiction books this weekend though. And I continued with my goals for exercise, completing week 11 of 20 for my Queen Bee half marathon in October.
Goals for that training include: walk 7 days a week, run 5 days a week per the scheduled distance, lift on Mondays and Fridays, and do yoga on Wednesday and Sunday (sometimes Saturday too).
Adulting is hard.
One of the things that I’ve seen recommended over and over again for Epilepsy is to keep your stress to a minimum. And how do you do that in an essentially unpredictable world, with an even more potentially unpredictable disease? The recommendations are limited, honestly.
Eat well (yeah, totally have been since before the seizure)
Exercise regularly (again, since before the seizure)
Sleep enough and consistently (thought I was – the undiagnosed sleep hypopnea begs to differ)
Take meds consistently (I’ve got timers in my phone and I’ve not yet missed a dose – I don’t understand not taking your meds!)
Meditation is usually the final recommended item to try to control your stress. I hadn’t done it since grad school (2002-2004 – THAT was stress). And frankly, I struggle here. Not because it’s hard (I don’t find it difficult) or because I don’t have time (I’m retired, I can bloody well make time) – but because I find it d u l l.
DULL. BORING. MIND NUMBING.
I’m still trying though. 5 minutes (ish) everyday. So, do I notice a difference? It’s kind of like the CPAP every night. I feel the same before as after as always. Frustration to not notice any difference.
I’m also reading more non fiction of the self improvement variety. That at least is interesting if not life altering.
Also, I like my pretend almond Joy bark
So the nodule on the right side is 2cm and there is an additional right side nodule. And there is a 3rd one on the left that appeared in the 6 months intervening the first ultrasound and the second. 2cm is a damn near an inch but is still unpalpable. I’m wondering if it’s unpalpable because it’s growing down/in/suprasternal. *sigh*
I am feeling it is harder to breathe, harder to swallow, and as though my throat is “full” or under pressure in certain positions – upside down, bent over, or when my head is turned to the left.*sigh*
I spoke to a friend who is a surgeon and got a list of questions to ask the surgeon. That helps.
I am going to get a referral to an endocrinologist from my GP in August. That helps.
I am debating getting a second opinion and interviewing a second surgeon just to view all of my options. That’s work on my part but it also helps.
I guess I should start on the lits of questions for the GP and the endocrinologist.
It’s hard to be grateful at 90F indoors. The sweat trickles almost constantly. Everyone, furred or naked pink monkey, is irritable and wants nothing more than to lay in front of a fan and to eat popsicles.
1.) Air conditioning/technology/freon. I don’t think that this really needs explanation.
2.) Fiscal responsibility. Being able to take care of necessary household expenses without going hungry is amazing.
3.) Control. Both in myself and in others. No one was actually beaten to death with a block of ice or bitten in a fit of heat rage. I’ll take that.
To be relentlessly optimistic and enduringly resilient.
1.) Air conditioning. Seriously. I live in Arizona. And when you walk from the oven that is outside to the cool that is inside, it’s damn near orgasmic.
2.) My weekly lunches with my friends. It’s a different location and a varying group of friends. It’s nice to get out and talk to people and eat a meal that I did not prepare.
3.) Books. Even though I’m still having trouble with my concentration and my reading has slowed down, I cannot help but be grateful to the fact that I read, that I like to read, and that I derive such pleasure from even just LOOKING for books.
I know, deep down, that much of life is unpredictable. I also know that my constant trying to control and minimize risk is a normal human thing to do – it’s only that, to me, makes total sense. Yes, when traveling, I do send my husband an itinerary. I take a picture/description of the car I’m using, just in case (though I entirely attribute this concern to that book about the dude who chopped his own arm off in the canyon). While some people view this as a little crazy, it gives me a good, happy, warm feeling of contentment to know that I’ve TRIED. I’ve tried to minimize risk within what I consider to be normal parameters.
I guess those parameters vary for everyone. I need to remember that.
“Have you come to terms with the unpredictability of events associated with epilepsy?”
This is something that I’m trying to NOT dwell on – because I feel like I’m doing everything reasonable and it’s still probably not enough (or it’s total overkill).
I sleep on a very strict schedule. I don’t drink alcohol. I stay hydrated and watch my electrolytes. I am avoiding gluten even more stringently than before(3 donuts before that tonic-clonic will make you a little chary of the gluten). I take my meds on a very, very strict schedule (0700 and 1900, Arizona time). I use my CPAP every night, I strive for all night but goal is at LEAST four hours a night. I exercise daily. I’m working on incorporating meditation daily to manage what little stress I have. And really, since I don’t know if I have any triggers – this just doesn’t seem like enough.
I realize that I have to accept that in some ways, having a seizure for me is going to be like getting into a car accident. It may have some portion of blame for me (say if I turn right on red without clearing the intersection entirely) but really, it could totally just be random chance (like if a tire on the big rig in front of me just happens to blow as I drive past the truck). I guess I accept this randomness while driving on the freeway. I accept it when I go for a run or a walk. I accept that LIFE is not predictable. So why does my chance of having a seizure being UNpredictable bother me so much?
I have a friend who, in an attempt to work on her anxiety, depression, etc, has a gratitude journal. She told me that I was one of the things she was grateful for. While I was a little uncomfortable initially, the more I thought about it, the more I realized that I should be proud and grateful that she viewed me as a positive influence on her life.
It also made me realize that I need to work on gratitude, probably daily. As the time since diagnosis progressed, I’m working on the mental aspects of my “disability” more and more – the physical aspects being mostly under control or at least, understood at this point. I’ve been working on meditation (it’s boring and I’m working on that) and now I’m going to try to add in the MANY things I should be grateful for in my life. I am so fucking lucky and I often don’t remember that. So. I’m going to start small. 3 things every time I post that I am grateful for. I’m not sure yet if I’ll be trying for something different every time or not. I guess I’ll work that out as I go.
1.) Spouse. Yup. Cliche perhaps but he’s support, beloved, sounding board, etc. It’s beyond anything I imagined in my life to have a partner. A SOLID partner that is there.
2.) Family. I have some of the least crazy parents who consistently in my childhood were good to me and my siblings. They made sacrifices to keep us sane, stable, and from killing one another. As a young adult, I never appreciated enough the difference that having parents that you unquestioningly assumed LOVED you would make in my life. And I know, without hesitation, that they do. And I’m pretty sure my siblings do too – even when I give them sweaty hugs.
3.) Running. While I value all my physical abilities, this one is by far the most important to me. I enjoy walking, lifting, aerial yoga, etc, etc, etc. But nothing is more helpful to my brain, my worries, my daily ability to just keep going, than running.
Have you come to terms with the unpredictability of events associated with epilepsy?
Since I read this question about a week ago, I’ve asked myself this every day. And the answer is still “No.”
As a freshly diagnosed epileptic (or person with epilepsy or person with a seizure disorder – whatever you want to call me), as well as a person with a multinodular thyroid (thyroidectomy and the ensuing hypothyroidism, anyone?) and sleep hypopnea (like sleep apnea, but not – but you still get a CPAP) – I’m pretty much still trying to process my rapid descent from healthy 37 year old on the slightly plump side (discounting mildly obnoxious guts that don’t like gluten, soy, or dairy and like to poop, a lot) with amazingly healthy blood work to 37 year old with 3 medical headaches, a very well exercised insurance cards, and still with really good blood work. But I think the epilepsy/seizures are really the hardest in some ways. Since, as my boards all say, they can qualify as a “disability” and that’s a word I never thought to see associated with myself.
So. I’m still not fully accepting, 4+ months after the tonic clonic seizure that started me on this path. I am controlled with the seizures at this time and learning to deal with medication side effects. I am using my accursed CPAP every night, even though I notice no difference in quality of life. The thyroid cockup is still pending – probably December of 2017 for a repeat ultrasound and January of 2018 for a removal (gross). In the meantime, I continue to eat well, exercise daily, and do the normal housewifely things I did before (retirement at 36!). I am happy to have my car back of 90 days of no driving. I do my races (see mud run picture below – I am pretty sure I facered into a muddy puddle right after this shot) and plan to do more – at least through December of this year.
I just have to accept the “unpredictability” of this new life.
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