Wah Wah Wahhh (Sad Trombone)

Nellie is out of commission for a while. The battery charging port is loose and the battery no longer charges. Yesterday the plug and wire pulled out when I tried to disconnect from the charger. I thought I’d be able to re-thread it using pliers, but didn’t realize that the port was not getting power. Unfortunately, the lights run off the same port to the battery. I discovered this at 9:30PM when I left a “girl’s night out” at Father Tom’s and couldn’t light my way home. Fortunately a gracious white knight loaded Nellie (and me) into his truck and dropped us at the front door of my very temporary home.

Photo of eBike battery with red wire dangling.

I made a necessary stop at Caney Fork Cycles where Curt has assured me that eBike will cover this repair. It is too new for this kind of thing to happen, so I hope it is not a sign of things to come.

Earlier this week I mentioned how nice it has been to be free to move around over the last month. Maybe I spoke too loudly? Each day the battery is in the shop is a day I lose independence.

Happy Independence Day to me? Fortunately, due to the holiday weekend, I have arranged for drivers for Saturday, Sunday, and Monday. Lots of small fun things going on!

 

ETA 7/6/2016: Nellie is still down. Problems buying the trike and with the battery are not what I anticipated being frustrating about giving up driving! I am looking in to using a different bike shop. I just hope they didn’t sell me a lemon.

Vertiginous Epilepsy or Vertigo

I don’t want to bore anyone with my medical details and, frankly, think the details are meant to be discussed with only my doctors and the closest people in my life. However, if you read this rambling blog, you will encounter some advocacy posts about my various causes and interests.

Medical Alert Bracelet

Aura: Vertiginous Epilepsy

I ride a trike because I can’t ride a bike safely and shouldn’t drive a car. I have epilepsy. It is as simple and complicated as that. Saying I have epilepsy is about as specific as someone saying they have a virus: there are lots of different kinds. My kind relates to pretty specific seizures, yet they are hard to nail down.

My first known seizures occurred in 1999 and for years they were only witnessed by an abusive partner.  He didn’t report the details observed thus an incorrect diagnosis of “vasovagal syncope” kept me from proper medical care until much more recently. (I’ll save my domestic violence soapbox for another day.)

A seizure (please don’t refer to seizures as “spells”) may or may not begin with a short warning called an “aura”. Some people hear things or see lights as an aura, I have a few seconds of spinning known as a vertiginous seizure. It is kind of like vertigo, except the direction of movement is very specific and always the same. It is not super common to have vertiginous seizures, but they often accompany temporal lobe partial seizures as an aura. That’s fits with my experience: I mostly have partial seizures that begin in the temporal lobe and sometimes generalize. I don’t always lose consciousness and I almost never shake, bite my tongue, or foam at the mouth.

The times that the seizures generalize (spread to the entire brain and knock me out), I end up with a migraine and severe fatigue after I wake up. Usually I don’t want to leave my bed for 12-24 hours, but even after that I’d not be safe to drive for a while. This only happens a few times a month and hopefully less given the right combination of drugs (AKA anti-epileptic drugs or AEDs).

Vertigo

Unfortunately, the spinning sensation is not limited to aura. On days when I am very tired or have a lot of stress, I will have “dizzy” moments several times during the day. So far, I have not tried to differentiate between the vertiginous aura and daytime vertigo… it feels almost the same to me. I once tracked the daytime dizzy moments for a week and had 11 in one day but 1-3 other days. It is hard to say if these are epileptic. While stress and fatigue are known to lower seizure thresholds so it make sense that these breakthroughs would happen, I believe they have more to do with moving my head position. My hearing isn’t great and that predisposes me to regular vertigo. On a bike, even regular vertigo will leave me in the ditch or, worse, pitch me into an oncoming car up to 11 times per day. On Nellie, I can close my eyes and hang on during dizzy moments without overturning.

Severe INSOMNIA

But I know you and you haven’t had trouble driving before except a few days per month. What gives? Over the past several months I have been struggling with wicked insomnia. This is on a different level than a handful of sleepless nights. I average about 15 total hours of sleep every 5 days. (You may notice that I blog and then edit posts over about the same period. Brains need sleep to do things like read and write.) I have tried just about everything, but nothing seems to make it go away. When I haven’t slept for 3 or 4 days, my reaction time, memory, cognitive function and general coordination is off. Some studies suggest that driving with severe sleep deprivation is similar to driving while intoxicated (I can’t drink caffeine or alcohol due to medication, by the way). Mix in the fact that fatigue increases the frequency of dizzy moments and suddenly I am walking because I can’t even ride a bike!

Walk Score

The Walk Score for my current house is 4 (AKA lousy) which is why I am selling my house. I hope to find somewhere affordable to live with a Walk Score over 50. Do you know your Walk Score? Check it out!

I am not asking for donations and links are not meant to solicit donations.

I don’t know the artist for the etsy link from the photograph above. I like having a pretty medical alert bracelet instead of the standard kind. I thought someone might like this one. 

Meeting the Neighbors

It has taken me some time to update due to my health and my move. As tempting as it is to try to go back and fill in the missing sections, I have decided to just press on and try to go forward.

IMG954117 1 (1)

I did want to point out that Nellie is a good way to meet the neighbors.

I wanted to do a full update on the trunk design (and that may come later), but for now just know that the trunk is on and I am now able to make purposeful trips. One such trip is for groceries.

Nellie at the bike rack on the corner of our local IGA. Bumper and trunk visible.This photo was taken from a recent grocery run. I over-bought and had to bungie the trunk lid down and ride with bags dangling from both handlebars. Luckily, this store is less than 2 miles from my front door. I love being able to shop at an IGA for as much as possible, but often find myself supplementing produce and international foods at Kroger and specialty stores. Those bigger stores are able to offer a better selection, but I find that IGAs have better prices on the items that they do carry. Follow THIS LINK to find an IGA near you.

This evening I checked out a small park in the community. I thought a Tai Chi group met there, but I wasn’t able to find them. Alas, I guess I will have to find another way to meet some people and find my zen.

I’ll head to the farmer’s market next weekend to see how much variety is there and give a full report.