Living With an Elephant in the Room

elephant-in-the-room-audialtempartemI briefly touched upon epilepsy in my post about the Patriot Half IM, but I thought I would share more about living with this elephant in the room, which is my epilepsy. It is not something most people know, except some family and friends and coworkers (and those of you who read that post back in June.)

First off, what is epilepsy? It is “a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain.” There are different types of epilepsy depending on their symptoms: Generalized (in which they affect the whole brain) and focal, or partial (in which they involve a small area of the brain). 

I was first diagnosed when I was 16 with what is now known to be tonic-clonic seizures. I feel media does not help with the image of someone having epilepsy, as the severity of symptoms varies. I feel people do not know enough about it, and tend to stigmatize those who might have it. No, not everyone with epilepsy wears a soft helmet to protect their head when they have a seizure. Not everyone continues to have seizures throughout their lives, either.

I would usually go 6-7 months without having a seizure (I was seizure free for a year before that!). I’ve had EEGs done, CT scans, MRIs, you name it. There have been some questionable nervous system anomalies, just things to keep an eye on.

December, however, has been a tough month: having multiple seizures and now experiencing a different type of seizure (on top of the clonic-tonic) which are simple partial seizures. The new onset of a different seizure has definitely put me into a whirlwind of fear, anxiety, and shock.   My neurologist wants me to do even more tests which involve hospital stays and started me on even more meds. There is an elephant in the room, and it is my epilepsy. Every morning and evening when I take my AE meds, I am reminded of what I have.

After these newest seizures, the voices telling me “what if you have a seizure again? what if you are not somewhere safe? what if….what if….” have returned, and they are not fun to deal with. When I was first diagnosed I was living in fear. Then, as the seizure activity lessened, I was able to go on with life. Now, that fear has returned, and is bigger than before. Having a seizure isn’t a fun experience; it scares the crap out of me, even though I have had tons before. This fear has caused more emotional breakdowns than I have had in a while. I’m pretty sure Kevin has seen more tears this past month than before–from stress, anxiety,and fear. People tell me “you can’t control them, you will be okay, you are always okay.” But, the people who tell me that are not suffering from seizures. If they had epilepsy themselves, I am sure they would have a better understanding of where I am coming from.  For me, the fear has become almost debilitating. This fear makes it nearly impossible for me to slip into the pool and swim. Logic tells me I am okay, I will be fine, I have been swimming and nothing has happened. That elephant is still there, telling me I might have a seizure in the water. What if I drown? What if I have one and no one is around to help? What if…What if….What if…?

I’ve had doctors tell me to be careful with the activities I do; to pay more attention on basic human needs to include eating and sleeping, and not to over exert myself. It is difficult being told what you can do and what you cannot do. However, having epilepsy makes me more aware of my body when training, especially electrolyte balance, as an imbalance decreases my seizure threshold.

But, I have come to the conclusion that I cannot let the elephant be in the room anymore. I love to swim. I love to bike. I love to do races. Training for this Ironman means a couple different things for me. One of the reasons is the epilepsy. I am training and will do my best to complete it in order to shove that elephant out of the room. I want to show other people like myself who may have similar fears about their epilepsy, that something like competing in an Ironman event can be done, and for me, no matter what it takes, will be done.

Advertisements

Thanksgiving Weekend Recap…And Other Things

I decided to write a quick post  upload loads of photos while I listen to the rain pattering away on the windows. Nope, no snow; just rain.

I hope everyone had a lovely Thanksgiving; I was able to have it off from work, and the Hudson Valley was blessed Thanksgiving Eve with a snowstorm, which made it feel more like Christmas Eve actually. It was nice to have the day off with family, and my sisters, mother and I took part in the Ferncliff Forest Turkey Trot (the last time I ran it and wrote about it was back in 2010!) I was thankful that the oragnizers did not postpone the race, as other 5ks in the area had been due to the incliment weather. The last 5k I did was the off-road Billy Goat 5k and I agree with prior posts in that I am not a fan of 5ks. I mean it is great that they don’t take that long to do (less than 24minutes), but I’m not used to that all-out-I’m-going-to-barf effort. I supposed with training I could get used to it. But with my sights set on an Ironman, training isn’t based around short distances. That being said, I do have speed workouts everyweek. A part of me was hoping to beat my time from my 5k last year, but, I guess this fall isn’t my year. Anyway, it was fun having the family around for the race and that they were able to take part and do the walk.

Seesters and mom

Seesters and mom

Thanksgiving weekend the fam did our Christmas decorating, which was awesome, because I cannot remember the last time we all decorated the Christmas Tree–I don’t think we have all gone tree hunting, either. Atleast from what I can remember….Christmas cookie baking and holiday decorating was a blast.

 

Does the tree have the right Christmas tree smell?

Does the tree have the right Christmas tree smell?

 

Kevin, our arborist, making sure there are enough branches in the correct spaces

Kevin, our arborist, making sure there are enough branches in the correct spaces

 

IMG_5917

 

IMG_5921

 

IMG_5911

 

Everyone has their part to play in the tree decorating

Everyone has their part to play in the tree decorating

Kevin and his bicycle wheel wreath!

Kevin and his bicycle wheel wreath!

Final touches require some assistance

Final touches require some assistance

Et voila!

Et voila!

cupcake decorating is no joke

cupcake decorating is no joke

I give cookie decorators mucho credit for their patience.

I give cookie decorators mucho credit for their patience.

 

A couple days ago I was able to coherce Kevin into our yearly “Walk around Rhinebeck and look at the window displays.” I’ve found the trick to having him compliant with my requests to take photos infront of the Rhinebeck Christmas Tree: buy him a soft pretzel with brown mustard along with a Mad Elf beer. 😛 I must applaud Rhinebeck this year, as the window displays are quite good. Even Kevin admitted the displays were better than years past.

I love anything shiny or that sparkles.

I love anything shiny or that sparkles.

P1000979

P1000993

 

 

 

P1000990

 

Happy Holidays!

 

 

 

Stages of a Trainer Session

Since the blistery cold weather has returned to us (or atleast is knocking on our door), my poor circulation has deemed it nearly impossible to ride outside anymore. Hence, the trainer is once again getting some love and attention.

 

I’m not sure about you, but I dread the trainer. I have written numerous posts about hating it. Yes, when I first bought mine years ago working nights, I was stoked to have it so I could ride at night in the dark. Now, though, I drag my feet walking upstairs to where I have my trainer parked. I know trainer sessions are an integral part of training for a triathlon, and I just have to buck up and do trainer workouts as planned. I’m simply not happy about them. I am not saying that they are easy workouts; I’m pretty sure I sweat more than an overweight man in a sauna when I am riding; and my heart rate is able to skyrocket in minutes. But, the simple fact I am riding so hard and so far and getting no where drives me nuts (like running on the dreadmill).

When I was finishing up my trainer workout the other day I came up with the emotional stages one might go through while on the trainer…And I have pictures that go along with the stages. (What else do you do when you are bored out of your mind than take incredibly awkward selfies of yourself looking horribly sweaty and disgusting?) Note: I am not one of those people who find it necessary to be caked in makeup whilst exercising. Infact, I am not one to feel it necessary to brush her hair before it, either.

Stage 1: The Warm Up

At this point, you have just started, warming up your legs, becoming adjusted to the bike

IMG_5867

“I’m just flipping through the songs on my iPod. Only 55 minutes to go”

 

Stage 2:  Boredom 

At this stage, you start looking at your surroundings, wishing you were somewhere else. Envy of people doing any activity other than riding on a trainer starts erupting.

IMG_5870

“Hmm, I wonder what is happening outside. Look at the snow; I could be skiing right now.”

 

Stage 3: The Pain

Whether it the big chainring on an incline or “speed ups,” you feel the pain in your legs, grit your teeth, and pedal pedal pedal.

IMG_5876

“Oh man oh man my legs my legs. THEYYYY BURRRRNNNNNN OMGGGGGGGG.”

Stage 4: Your Second Wind

Between sets, your heart rate comes down a bit, and the burning legs ceases.

IMG_5872

“Grrrr.F-ck the burn, I’ve got this. This is EASY! Eye of the tiger, baby, eye of the tiger. BRING IT!”

Stage 5: Depression and sadness

With more sets, and increasing leg burn, you become depressed and sad, questioning life and why you have to be on this stupid machine.

IMG_5877

“I never did anything to deserve this. All I want to do is be outside.”

Stage 6: Mental breakdown

At this point, the workout is almost done. Your legs feel like they are no longer a part of your body. You feel like giving up all together. Flashes of your life start flooding your brain. Your eyes well with tears from the pain.

 

IMG_5879

“Why me, God, why meeeee?”

Stage 7: The Finish

You’ve finished the cool-down; you have completed the workout. Life feels like it is full of rainbows and sunshine. Relief, happiness, and joy fill your body. It.Is.Done.

IMG_5880

“Pshh, that was easy.”

Happy Trainer-Riding!

Ending notes:

Yes, I realized that my earphones were all knotted up, but you can’t untangle headphones while in pain. I feel like Roseanne Roseannadanna pointing out that “little bead of sweat on her nose” when flipping through the photos. 

 

 

 

 

When was the last crazy post written?

December 2014
M T W T F S S
« Nov   Feb »
1234567
891011121314
15161718192021
22232425262728
293031  

What’s catching peoples attention

Sign up to receive updates on my adventures by email.

Join 73 other followers

Monthly Archives of my nonsense